• Study protocol
  • Open access
  • Published: 23 June 2022

Components of case management in caring for patients with dementia: a mixed-methods study

  • Desirée Jerez-Barranco 1 , 2 ,
  • Laura Gutiérrez-Rodríguez 1 , 3 ,
  • Juan Carlos Morilla-Herrera 1 , 3 , 4 ,
  • Magdalena Cuevas Fernandez-Gallego 1 , 3 , 4 ,
  • Remedios Rojano-Perez 4 ,
  • María Dolores Camuñez-Gomez 4 ,
  • José Luis Sanchez-Del Campo 4 &
  • Silvia García-Mayor 1 , 3  

BMC Nursing volume  21 , Article number:  163 ( 2022 ) Cite this article

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Case management has shown improvements in some health outcomes for dementia patients and their families. However, despite its benefits the components of case management in order to provide effective patient and family care remain unknown at present. Thus, the aim of this study is to identify the specific components of case management in caring for patients with dementia and to determine the necessary intensity of its deployment to enhance outcomes for these patients and their caregivers.

Mixed-methods study with a qualitative phase to characterise forms of service provision, according to the case management components involved, followed by a quantitative phase to analyse the correlations between different patterns of service provision, adverse events in patients and caregiver overload. This study will be based on the variables described in the RANGE.COM register.

This research is expected to achieve a reproducible, evaluable set of interventions that can be modelled to optimise case management effectiveness for patients with dementia . Interactions between patients with dementia, their family caregivers and case management healthcare services, the components of these interactions and their association with the conditions of the individuals concerned are issues of great interest in the field of case management, which is constantly evolving.

Peer Review reports

In recent decades, population aging has increased in line with life expectancy, improvements in the quality and conditions of life and the falling birth rate. The proportion of the global elderly is projected to increase from 12 to 22%, creating a population of two billion men and women by 2050 [ 1 ]. In Spain, the National Institute of Statistics (INE) forecasts that the number of persons aged over 80 years will have increased by 260% by 2049 [ 2 ].

In Andalusia (southern Spain), the life expectancy of women was 84.9 years in 2019, while that of men was 79.6 years [ 3 ]. However, advanced age and chronic disease can provoke frailty and dependence [ 1 ] with the consequent risk of hospitalisation, institutionalisation and death [ 4 , 5 , 6 ]. The appearance of dementia is usually associated with aging. Its prolonged duration increases morbidity and mortality, reduces the quality of life of patients and their families, provokes many limitations and often creates dependency.

Pathologies causing significant cognitive impairment, such as dementia, have been identified as predictive factors of institutionalisation [ 7 ]. Thus, 40% of those admitted to nursing homes suffer from dementia. In Andalusia, an estimated 60,000 people suffer from Alzheimer's disease. Of these, 90% live with their families and 40% are totally dependent [ 8 ].

The morbidity and mortality attributed to dementia is increasing worldwide [ 3 , 9 , 10 , 11 , 12 , 13 ], and this tendency is expected to increase exponentially [ 3 , 14 ]. Moreover, the number of hospital admissions for persons with dementia may be ten times greater than that for persons of the same age without dementia [ 15 ].

In 2015, the total global cost of dementia was around $818 billion [ 16 ], with direct socio-health economic costs of $487 billion, equivalent to 0.65% of the global gross domestic product (GDP) [ 17 ]. In 2016, the average annual cost of treatment in Spain for a patient with dementia was €24,184 [ 18 , 19 , 20 ].

In the EU, 44.2% of persons aged over 65 years presented some form of disability requiring assistance [ 21 ]. In Andalusia, around 66% of dependents were aged over 65 years, these rates being highest in the provinces of Malaga and Seville [ 22 ].

This escalation of dependency is associated with an increased need for care, and it is the family environment, not the health system, that is the main provider. In Spain, the White Paper on Dependency [ 23 ] defines informal care as “the provision of health care to dependent persons by relatives, friends or others in the immediate social circle, who do not receive financial compensation for the help given”. Caregivers often dedicate a large part of their available time to the direct and indirect tasks involved, with no formal timetable, schedule or direct economic return for doing so, and very often lack the skills required to perform this function, despite the personal costs incurred. In total, the estimated costs for a person with dementia exceed €60,000 per year [ 24 ]. Nevertheless, informal care reduces public spending on health care by almost four times [ 25 ], and is equivalent to 1.73–4.90% of GDP [ 26 ].

Primary caregivers may present fatigue, insomnia, mood swings, anxiety, sadness, irritability or deteriorated social relationships, among other signs and symptoms related to the “overburdened caregiver” syndrome [ 27 , 28 ]. The patient’s degree of functional dependence and the behavioural alterations experienced are key factors in precipitating this overload, which can lead to the caregiver renouncing this responsibility, and to the patient’s institutionalisation [ 28 , 29 ].

Health systems, though well prepared to respond to acute situations, are being overwhelmed by chronic health problems [ 30 ]. The current failure to overcome this challenge is provoking avoidable hospitalisations, breakdowns in the continuity of care and adverse outcomes for patients [ 18 ]. In consequence, the clinical care of acute patients should be complemented with a model that also addresses the issues raised by the chronically sick, requiring comprehensive, continuous and diversified attention [ 31 ]. To achieve this, self-care, case management and primary care should be promoted and reinforced as the crucial elements of chronic care [ 19 ].

According to the Case Management Society of America, case management is “a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality cost-effective outcomes” [ 32 ]. It may improve home care and help increase service efficiency and effectiveness by boosting patients’ functional recovery, fostering access to professionals and resources, increasing patient and caregiver satisfaction, streamlining therapeutic regimens, reducing caregiver overload and optimising the use of services [ 33 ].

Case management may also improve outcomes at certain time points in patients with dementia: for example, it reduces the risk of institutionalisation in the first six and eighteen months of dementia, reduces agitation at eighteen months, reduces the number of days of hospital admissions in the first six and twelve months and reduces the burden on the caregiver in the first six months [ 34 ].

Despite these acknowledged benefits, there remains some uncertainty about the specific components of case management and the intensity with which they should be deployed to provide an effective response to dementia. Among other causative factors, this indefinition may be due to the complexity of the interventions performed. A complex intervention, whether therapeutic or preventive, comprises a large number of individual interacting elements, all of which are related to the patient, the organisation (for example, the duration and frequency of interventions) and/or the health care itself (such as the professionals involved and the healthcare context) [ 35 ]. However, while these elements may all be essential to proper functioning, it is difficult to isolate the “key ingredients” determining the effectiveness of the intervention. Indeed, the greater the difficulty in defining these key ingredients and how they are interrelated, the greater the probability of the intervention being complex and thus more difficult to reproduce for other contexts, patients or organisations [ 36 ].

To address these issues, Campbell et al. [ 37 ] developed a conceptual framework to establish guidelines for the correct development of randomised controlled studies aimed at defining and evaluating complex interventions.

Various studies have reported the positive effects of case management in the treatment of dementia [ 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ], reduce the fatigue anxiety of caregivers [ 49 ], delay institutionalisation [ 46 ] and foster the uptake of community services [ 42 ].

Regarding the specific components of case management for patients with dementia, Backhouse et al. [ 51 ] identified five elements that are determinant to the effectiveness of an intervention: the characteristics of the case management nurses (CMN) involved, communication (among professionals and with their clients), the type of intervention, the resources available and the support network established (again, both for the professionals and for their clients). In related work, Verkade et al. [ 52 ] described the following essential components of case management in patients with dementia: information, support and advice, coordination of the care provided and, to a lesser extent, practical help. The main conclusion drawn by these authors was that case management for patients with dementia should assist both the patient and the underlying system of support.

The Andalusian Public Health System (SSPA) has been implementing case management since 2002, a service that is provided by almost 400 professionals, throughout the region. It is one of the pioneering services in Spain and its effectiveness has led many other areas to adopt this reference model [ 33 ]. The Andalusian system was originally designed to serve the homebound population, often subject to complex chronic disease. Nevertheless, the real capacity of the Andalusian model to respond to the needs of this population has yet to be clarified.

For these situations, a commonly-adopted approach in health service research is to generate registers of diseases or specific clinical situations. These have a long tradition in cancer research [ 53 ] and in many other areas, such as stroke [ 54 ], mental health [ 55 ] and cardiovascular disease, such as the ARIAM registry [ 56 ]. This type of record-based research has great potential for understanding health processes from a longitudinal perspective and for obtaining data under normal practice conditions.

In view of these considerations, our research group created the RANGE.COM multi-centre case management register in Andalusia in 2012 [ 57 ]. This register currently includes 1,065 patients, detailing the profile and immediate social context of every patient with multimorbidity who receives this service. At present, RANGE.COM covers part of the internationally standardised outcome criteria for elderly persons with frailty [ 58 ], together with some variables related to social and family determinants.

Evidence-based guidelines and recommendations have been published for most of the health problems underlying dementias and appropriate quality measures. However, the transfer into practice of this evidence has not been systematically investigated and there is uncertainty about the structures and processes that would support its implementation and, ultimately, enhance nursing outcomes for persons with dementia [ 59 ]. Furthermore, the studies that have been conducted to date present large variations in terms of the case management models and outcome criteria evaluated. Consequently, the results of effectiveness studies remain far from conclusive.

The present study, therefore, addresses the need to analyse the interactions of patients, families and the health services, to describe the components of these interactions and to determine their association with the status of the patient and family. In parallel, we intend to establish a synergy with the information obtained from the RANGE.COM register [ 57 ], opening up new options in response to the major research question guiding this study.

General aims

To identify the components of case management in persons with dementia and in their primary caregivers, in order to characterise appropriate forms of service delivery.

To analyse the correlations between different patterns of service provision, on the one hand, and the presence of adverse events in patients and of burden on family caregivers, on the other.

Specific aims

To describe the sociodemographic and clinical characteristics (such as functionality and comorbidities) of patients with dementia and the characteristics of their caregivers (dedication to care, perceived burden) who receive case management in the home environment, within the portfolio of services provided by the Andalusian Public Health System.

To identify common components and interventions used in practice by CMN.

To describe the correlation between components / interventions deployed by CMN and the presence of adverse events in patients (mortality, falls, hospital admission, pressure ulcers and institutionalisation).

To analyse the correlation between the components / interventions deployed by CMN and the burdens perceived by family caregivers of persons with dementia.

These study goals will be addressed by means of a sequential exploratory study of mixed methods in which a first qualitative phase will try to explore the practice patterns implemented by the CMN which it will guide a second quantitative phase. In the first phase it will be created a conceptualized analysis framework with which to study the data obtained. During quantitative phase, the case management results of the range registry will be investigated in relation to the content and distribution of the service components. Hence, the constructivist approach of qualitative methods, thus providing new perspectives and facilitating a better understanding of the characteristics, processes and results of case management for persons with dementia [ 60 ].

The study will be carried out in Málaga (Spain), where the primary care reference is the Málaga Health District. This city has 26 health centres, with 289 nurses, 319 family doctors and 23 CMN. Of the latter, 91.6% are accredited by the Andalusian Quality Agency and all have completed case management training.

Recruitment for the study will take place at all 26 health centres.

Participants

Patients recently diagnosed with dementia and their caregivers, referred for case management and willing to participate in the study.

CMN: Eight persons will be selected, in two groups of four, classified by years of experience.

Inclusion criterion for patients

Diagnosis of dementia for patients who are new users of the case management services portfolio in the Málaga Health District, not in a terminal situation and accompanied by a family caregiver.

Exclusion criterion for patients

Refusal of consent, either directly or through the caregiver.

Inclusion criterion for caregivers

Primary caregiver for the patient in question.

Exclusion criterion for caregivers

Incapacity to perform this function due to serious mental disorder, such as depression, bipolar affective disorder, schizophrenia, developmental disorders or dementia.

Data collection

Phase 1. qualitative study.

Qualitative, case study design, using participant observation combined with in-depth interviews. The results obtained from Phase 1 will identify the components of case management applied to patients with dementia and their caregivers, from observation of this process in the natural clinical context. This methodological approach will enable us to consider a specific context, with a well- defined organisation and social setting, i.e. the provision of home care for persons with dementia, and will facilitate the involvement of a limited number of participants through episodic observations. Moreover, this approach has been adopted in a previous study of case management components [ 61 ]. With this method, we can address specific phenomena to better understand the "hows" and "whys", without manipulating the participants’ normal way of life. Furthermore, relevant contextual factors may be revealed, despite the possible blurring of boundaries between the context and the phenomenon to be studied [ 62 ].

Qualitative sampling

In this study, the unit of analysis will be the CMN, selected by intentional qualitative sampling to achieve four groups with the following segmentation criteria: relevant experience of more or less than ten years, and the socioeconomic level of the health area considered (low or medium–low vs. medium–high or high). This approach allows us to take a multiple-case approach to identify intra- and inter-case analogies and similarities [ 62 ]. Eight health centres will be selected, according to their ranking in the average municipal gross income per 1,000 inhabitants (data provided by the Spanish Finance Ministry [ 63 ].

This process will result in the selection of three health centres in the upper quartile of average income, three in the central quartile and three in the lower quartile. In total, eight CMN will be selected for participant observation and in-depth interviews. All patients who meet the criteria for dementia and who receive or request case management services from these nurses will be included in the analysis.

Study design

To avoid the usual over-expansion of case studies, we will apply the recommendations of Yin et al. [ 64 ]. A temporal and spatial framework will be established for the observation conducted at each health centre, delimited by the activity (patients with dementia who receive or request case management) and the context (home care services). Accordingly, a contact interview will be scheduled between the researcher and the CMN, during a normal working day.

Patients with dementia will be identified by their physician, family nurse or social worker, and referred for coordination by the CMN. Subsequently, the observations will be made on a date agreed with the nurse.

The observation location will usually be the patient's home, although for those in initial GDS-FAST stages, the contact might be made at the health centre. Participant observation will take the form of interaction between researcher and informants, in the latter’s home ground, thus enabling data to be collected in a systematic and non-intrusive way [ 65 ]. The presence of the researcher is of decisive importance, but must not alter the normal functioning of the scene observed. The only modification to the scene will be this presence, and the researcher’s role will be strictly non-determining in the social action [ 66 ]. To ensure these requirements are met, the observer accompanying the CMN will be a nurse with primary healthcare experience. Therefore, the duration of the familiarisation phase will be minimal.

The participant observation may require several CMN visits until the case episode is considered closed. Resources created for this study include a field journal and a set of observation units, based on a prior review of the literature and on consultation with expert researchers in the field (case management professionals with at least five years’ practice and research experience). Additional units may also be added, if necessary, in the course of the observations. During the observations, formal semi-structured interviews will also be carried out between the CMN and the patients and caregivers. Informal interviews may also be held in the natural environment of the observation. Another potential element is the analysis of documents or records of interest (for example, notes taken by the CMN, exchanges of written information between the parties, protocols, guides and aids to decision making).

All observations and interviews will be recorded with a digital voice recorder, to be used exclusively for this study, with prior written authorisation from the patient, if capable, or otherwise from his/her representative. In addition, authorisation will be obtained from all persons being recorded while accompanying the study subject. Every observation will later be transcribed, as far as possible reflecting the whole tone and content of the recording. Field notes will be taken on aspects related to body and gestural language, the researchers’ reflections, descriptions of persons and contexts and other items considered of interest by the researchers in situ.

The transcription will be performed by members of the research team and stored using ATLAS.Ti 22 qualitative analysis software.

Qualitative analysis

The transcription documents, as well as the field notes will be carefully read to identify emerging themes and will form the basis for a deductive coding (code by list), incorporating the components detailed by Verkade et al. [ 52 ]. Additionally (as in-vivo coding), further components from outside this list may be added. The encoded fragments will then be refined, modified or even reconfigured, for subsequent categorisation. All non-encoded material will also be reviewed, and if it contains important discourse elements it will be encoded freely.

These actions will generate a list of codes, to be grouped into categories, subcategories and possible topics of analysis.

A second member of the research team will triangulate the encoded information and independently review the encoding performed. Any discrepancies will be resolved by consensus among the researchers.

The results obtained will then be converted into a catalogue of components that can be used to map each aspect of the case management applied.

The credibility and validity of the data will be ensured by applying the reliability criteria proposed by Lincoln and Guba [ 67 ]: credibility, transferrability, consistency and neutrality (confirmability).

Phase 2. Quantitative study

This phase will consist of an analytical cross-sectional observational study, addressing Study Aims 1, 3 and 4.

Study subjects: population and sample

The study sample will consist of 157 CMN and 186 patients with dementia included in the Andalusian Register of patients undergoing follow-up by case management (RANGE.COM) [ 57 ] plus those who are currently in follow-up or who enter as new cases. Subsequently, post hoc statistical power estimations will be carried out. This register currently describes 1,065 patients, throughout Andalusia, being followed up by case managers. Any CMN who has no cases with dementia will be excluded from the analysis, although there is little probability of this occurring, due to the high frequency with which these patients occupy the provision of case management attention.

Data compilation

First, we will analyse the variables characterising the patients with dementia who are recorded in the RANGE.COM register at the time of the study, in terms of sociodemographics (age, sex, education, cohabitation) and clinical status (functionality, cognitive impairment, comorbidities). We will also address the variables corresponding to the caregivers (age, sex, education, daily dedication to care and burden).

Subsequently, using the case management components of dementias identified in the qualitative phase, a data collection form will be developed addressing the individual components, so that an email invitation may be sent to each of the RANGE.COM registered nurses (listed in this information registry), asking them to select the components that best describe their daily professional practice in patients with dementia. Each component will be self-assessed in order of the frequency with which it is applied in daily practice, scored on a Likert scale ranging from 1 to 5 (1 = I never perform this intervention for any patient or family caregiver; 5 = I perform this intervention regularly for all patients and/or family caregivers).

In addition, the nurses will be asked to provide sociodemographic data (age, sex) and details for professional characterisation (years of total experience, years of experience in case management, academic level achieved and self-perceived level of competence, using the Advanced Practice Nurses Competency Assesment Instrument [APNCAI] for the evaluation of competencies in advanced practice nurses validated by our research group) [ 68 ].

These components will then be analysed to generate groupings from which patterns of differential practices can be identified.

Quantitative analysis

Descriptive statistics will be obtained, with measures of central tendency, dispersion and the distribution of percentages for the variables characterising the participant nurses and patients. The normality of the distributions will be checked using the Kolmogorov–Smirnov test. Bivariate analyses will be carried out according to this normality or otherwise and the nature of the variables compared, using Pearson’s or Spearman's correlation, the chi-square test, Student's t test or Manuscript-Whitney's U test and ANOVA (after verification of homoscedasticity with the Levene test), applying the Brown-Forsythe and Games-Howell test in cases of heteroscedasticity, and the Kruskall-Wallis test otherwise.

A k-means cluster analysis will be carried out to identify groupings of CMN profiles according to the distances observed between the centroids of the variables generated by the components of the qualitative phase. This analysis will take an exploratory approach, seeking, a priori, to identify 3–4 clusters from which the one deemed most plausible will then be selected. An ANOVA will be performed on the cluster assigned to each CMN to identify associations between practices and outcomes (numbers of readmissions, acute hospitalisations, situations of caregiver overload, falls and visits to healthcare providers – General practitioner [GP], family nurse, social worker, hospital specialist). A chi-square test will also be performed to determine the relationship between the membership cluster and institutionalisation. Finally, a multivariate analysis will be made of outcomes such as institutionalisation, falls, hospital admissions and caregiver overload, using multiple linear regression with hierarchical methods, and incorporating the CMN as a second level of fitting (incorporated within the corresponding cluster). The first level will incorporate the patient’s age, sex and level of comorbidity, together with variables presenting a relevant association in the prior bivariate analyses, in order to detect possible confounders .

The results of this study will provide information as to which case management models and interventions are most effective in achieving results beneficial for the health of persons with dementia and for their caregivers, thus reducing the risks of institutionalisation and caregiver overload. The results obtained from this research are expected to be transferable through consensus documents, enabling us to compare and contrast modes of case management practice and to differentiate the results achieved. Foreseeably, these findings could guide recommendations to combine effective intervention packages, although they will need to be examined against other, solid research findings in order to make final recommendations on clinical practice guidelines for healthcare systems. The research results are expected to be widely applicable and will facilitate improvements to routine clinical practice in the Andalusian Public Health System in the following areas:

Characterise the case management models used in Andalusia for patients with dementia.

Determine the most effective case management practices and those most benefiting patients’ health and caregivers’ wellbeing.

Reduce the risk of institutionalisation of persons with dementia.

Improve the management of personal and family health.

Reduce the burden on caregivers and healthcare services.

Increase patient and caregiver satisfaction.

Studies conducted in Andalusia have shown that case management improves home care for patients and increases service efficiency and effectiveness by enhancing the functional recovery of patients, facilitating access to professionals and resources, improving patient and caregiver satisfaction, contributing to the management of treatment regimens and reducing caregiver overload and the use of services [ 33 ]. Moreover, various systematic reviews have reported that case management benefits both patients and caregivers, although further research is needed to determine the optimal extent and characteristics of the programme applied [ 69 , 70 ]. At the global level, results in this field are uneven, probably due to variability in case management practices [ 71 , 72 , 73 , 74 , 75 , 76 ].

It has been estimated that by 2030 some 156,000 people will be affected by dementia in Andalusia [ 77 ]. Therefore, the research findings we expect to obtain will be applicable to large numbers of patients and their caregivers, both in this region and elsewhere [ 1 ].

Limitations

In any given study, the value of clinical practice models to study their association with the results achieved, using a retrospective database, may be affected by changes in the professional practices during the period considered or by fluctuations in the characteristics of the professionals who provide the service. However, case management is well established in the Andalusian Public Health System and no major modifications are foreseen in this regard, although the possible influence of the contingencies mentioned will be monitored throughout the study.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.

Abbreviations

National Institute of Statistics

Andalusian Institute of Statistics and Cartography

Gross Domestic Product

Andalusian Public Health System

Case Management Nurse

Advanced Practice Nurses Competency Assessment Instrument

General Practitioner

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This work was supported within the study AP-0245–2020 of the call for research and innovation projects in the field of primary care of the Andalusian Health Service (SAS) 2019, funded by the Progress and Health Andalusian Public Foundation (Fundación Progreso y Salud). This public entity in addition to providing us with the funding, they are the ones responsible for managing it.

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Desirée Jerez-Barranco, Laura Gutiérrez-Rodríguez, Juan Carlos Morilla-Herrera, Magdalena Cuevas Fernandez-Gallego & Silvia García-Mayor

Andalusian Health Service, District Costa del Sol, Málaga, Spain

Desirée Jerez-Barranco

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Laura Gutiérrez-Rodríguez, Juan Carlos Morilla-Herrera, Magdalena Cuevas Fernandez-Gallego & Silvia García-Mayor

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Jerez-Barranco, D., Gutiérrez-Rodríguez, L., Morilla-Herrera, J.C. et al. Components of case management in caring for patients with dementia: a mixed-methods study. BMC Nurs 21 , 163 (2022). https://doi.org/10.1186/s12912-022-00935-w

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  • Case management

BMC Nursing

ISSN: 1472-6955

dementia case study analysis

Using care navigation to address caregiver burden in dementia: A qualitative case study analysis

Affiliations.

  • 1 Philip R. Lee Institute for Health Policy Studies University of California San Francisco California.
  • 2 Department of Neurology Global Brain Health Institute University of California San Francisco California.
  • 3 Department of Anthropology History and Social Medicine University of California San Francisco California.
  • 4 Department of Neurology Memory and Aging Center University of California San Francisco California.
  • 5 Department of Clinical Pharmacy University of California San Francisco California.
  • 6 Division of Geriatrics Department of Internal Medicine Home Instead Center for Successful Aging Omaha Nebraska.
  • PMID: 32377557
  • PMCID: PMC7201177
  • DOI: 10.1002/trc2.12010

Introduction: Many caregivers of people with dementia experience burden and resulting health effects due to the intensive nature of caregiving. Phone- and web-based care navigation is an innovative model of care that may be useful in addressing caregiver burden in dementia.

Methods: Qualitative methods (interviews, focus groups, and case study analysis) were used to identify care navigator approaches used to address caregiver burden in dementia as part of a dementia care navigation program.

Results: Care navigators targeted caregiver burden by focusing on strategies to reduce caregiver guilt and frustration, manage patient-related behavior, address caregiver depression, and improve the relationship between the caregiver and person with dementia. The case studies presented demonstrate the ways that care navigators identified patient and caregiver needs and tailored their approaches to meet the specific social, cultural, economic, and geographic contexts of the dyads with which they worked.

Discussion: Findings provide insights into strategies used to address caregiver burden through care navigation. Care navigators who speak the same language as the caregivers with whom they work and who have an in-depth understanding of the symptoms of different dementia syndromes may be particularly effective.

Keywords: care navigation; caregiver burden; case study analysis; dementia; personalized care; qualitative research.

© 2020 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.

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  • Volume 8, Issue 3
  • Dementia case-finding in hospitals: a qualitative study exploring the views of healthcare professionals in English primary care and secondary care
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  • http://orcid.org/0000-0002-0637-2118 Anne-Marie Burn 1 ,
  • http://orcid.org/0000-0002-8127-2061 Jane Fleming 2 ,
  • Carol Brayne 2 ,
  • Chris Fox 3 ,
  • Frances Bunn 1
  • 1 Centre for Research in Public Health and Community Care , University of Hertfordshire , Hatfield , UK
  • 2 Cambridge Institute of Public Health , School of Clinical Medicine, University of Cambridge , Cambridge , UK
  • 3 Faculty of Medicine and Health Sciences , Norwich Medical School, University of East Anglia , Norwich , UK
  • Correspondence to Dr Anne-Marie Burn; a.burn3{at}herts.ac.uk

Objectives In 2012–2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived benefits and challenges.

Design Qualitative study involving interviews, focus groups and thematic content analysis.

Setting Primary care and secondary care across six counties in the East of England.

Participants Hospital staff involved in dementia case-finding and primary care staff in the catchment areas of those hospitals.

Results We recruited 23 hospital staff and 36 primary care staff, including 30 general practitioners (GPs). Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. The study shows that there were variations in how well hospitals recorded and reported outcomes to GPs. Barriers between primary care and secondary care, including GPs’ lack of access to hospital investigations and lack of clarity about roles and responsibilities, impacted case-finding outcomes. Staff in secondary care were more positive about the initiative than primary care staff, and there were conflicting priorities for primary care and secondary care regarding case-finding.

Conclusions The study suggests a more evidence-based approach was needed to justify approaches to dementia case-finding. Information communicated to primary care from hospitals needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care. Follow-up in primary care further requires access to options for postdiagnostic support. There is a need to evaluate the outcomes for patients and the economic impact on health and care services across settings.

  • dementia case-finding
  • cognitive impairment

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-020521

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Strengths and limitations of the study

This is one of the first studies to explore the views of primary and secondary care professionals regarding dementia case-finding in acute hospitals.

This study makes an important contribution to the debate about the value of dementia case-finding in hospitals.

The study was conducted in counties across the East of England and may not represent the views and experiences of healthcare professionals in other regions of the UK and other countries.

The hospital staff who participated in the study were involved in dementia case-finding in their hospital and may have more positive attitudes to case-finding compared with other hospital staff.

General practitioners who participated may be more likely to have an interest in cognitive disorders or views on case-finding (either positive or negative), leading to a possible bias in reported comments.

Large numbers of older people admitted acutely to hospitals have an undiagnosed pre-existing cognitive impairment. Estimates of dementia prevalence in hospital settings range from 15% to 42%. 1–5 The consequent demand for complex care and concerns about care for older people living with dementia 6–10 have prompted a number of policy initiatives in the UK over the last decade including financial incentives to service providers for dementia case-finding in hospitals 11–14 and general practices. 15–17 The rationale for dementia case-finding is that the recognition of cognitive impairment in older patients may lead to a timely diagnosis and enable better planning of appropriate current and future care, maybe delaying progression of cognitive decline and improving health outcomes. 18 19

Reviews and national screening committee reports have found no evidence to support dementia screening and, to the authors’ knowledge, no systematic review has evaluated the impact of dementia case-finding on outcomes for patients or carers. 20–23 Despite this, the Department of Health has introduced strong directives to secondary care that stipulate that all people aged ≥75-years with unplanned hospital admissions have been cognitively assessed and that those identified as potentially having dementia have further investigations or are appropriately referred. Dementia case-finding targets for acute hospitals have continued for several years 12–14 alongside the introduction of incentives for general practice to fulfil similar requirements through an enhanced payments scheme 15–17 aiming to embed this approach in ongoing practice. It is notable that this policy was not introduced following research, to inform whether it led to benefits or harms, and the cost of diversion of key staff time for the collection, recording and reporting of information has not been evaluated. These nationwide initiatives did allow local services to fulfil targets using methods devised to fit local settings, leading to a plethora of approaches being adopted.

There is a need to examine whether dementia case-finding processes function as planned to deliver the outcomes intended. While there is evidence that brief screening tests can detect undiagnosed dementia, 24–26 it is less clear where the balance of benefits and harms of screening lies, 1 27 28 and there are concerns about the potential impacts of an unsought diagnosis. 29 30 As case-finding in hospitals takes place during acute admissions, there is also the issue of distinguishing between dementia and delirium or unspecified cognitive impairment which may never lead to a diagnosis. 31 Many cognitive assessments have not been validated with patients with delirium 25 32 and may lead to false-positives. Moreover, in practice the distinction between screening and case-finding is often not clear to either clinicians or the general public, a factor which is also likely to affect the impacts. 33 34

How hospitals are implementing current policies to encourage case-finding and how these initiatives impact on other services is poorly understood, and there has been a call for more evidence to evaluate such initiatives. 35 The overall aims of this study were to (1) understand the current approaches to dementia case-finding in hospitals, (2) understand how these impact on communication regarding case-finding outcomes from hospitals to general practitioners (GPs) and subsequent follow-up in primary care and (3) explore the experiences and perceptions of hospital staff and GPs involved in case-finding processes.

We undertook exploratory qualitative interviews and focus groups with hospital staff and GPs in the East of England. This research is part of a study called CASCADE (CASe finding in hospitals - impacts on CAre for people with DEmentia). 36 We approached 18 hospitals and purposively identified key clinicians who were involved in carrying out case-finding assessments in their hospital (eg, dementia nurse-specialists, liaison psychiatrists, clinical leads for dementia) and invited them by email for a telephone interview. GPs in catchment areas served by hospitals across the Eastern region (Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Norfolk and Suffolk) were invited for a telephone interview or to attend a focus group. They were recruited through regional professional and clinical research networks, Clinical Commissioning Groups and direct contacts.

We developed two interview schedules, one tailored to primary care and one to secondary care professionals. The interview schedule for hospital staff (presented in online supplementary file 1 ) was designed to understand how dementia case-finding processes were developed and implemented at their hospital and to gather their perceptions of case-finding processes and impacts. The interview schedule for primary care (presented in online supplementary file 2 ) was developed to elicit GPs’ perspectives and experiences of receiving reports or recommendations for their patients as a result of case-finding during an acute admission and how this informed their decisions regarding possible further investigations, treatment and care of their patients.

Supplementary file 1

Supplementary file 2.

Information sheets outlined the study to health professionals and provided contact details of the research team. Signed consent was obtained prior to interviews and focus groups. Telephone interviews were carried out by two female researchers (A-MB, JF) and focus groups were held at two general practices in the East of England facilitated by one researcher (JF). Both researchers have extensive experience of conducting qualitative research in the area of dementia and health services. Interviews and focus groups lasted about an hour, were audio-recorded, transcribed verbatim and anonymised following protocols for secure data storage. Researchers agreed at which point data saturation had been achieved.

We undertook thematic content analysis 37 to elicit the key features of clinicians’ experiences from the data. Three researchers (A-MB, FB, JF) independently scrutinised and developed codes from the transcripts and through discussion compared codes and developed an initial coding frame. Emerging themes were discussed with representatives from the Patient and Public Involvement Groups at both participating universities and the study advisory group, and refinements were made to the coding frame. The transcripts and coding framework were entered into NVivo software V.11 to assist management of further qualitative data analysis, and a number of overarching themes were identified.

We recruited 23 hospital staff from 12 of the 18 acute hospitals in Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Norfolk and Suffolk. Through regional professional networks and Clinical Commissioning Groups, we recruited 36 primary care staff (including 30 GPs) within the catchment of hospitals in the East of England. Further details of participants are given in tables 1 and 2 . All hospital staff took part in individual telephone interviews and had clinical experience ranging between 8 and 41 years (mean 22.8 years). In primary care, 17 GPs took part in individual interviews and 19 staff took part in focus groups. Participants’ clinical experience varied in focus groups, ranging from GP trainees to senior partners about to retire, among interviewees ranging from 6 to 30 years (mean 22.5 years).

  • View inline

Summary of telephone interviews with hospital staff and GPs

Summary of focus groups with GPs and other primary care staff

Three main themes emerged from the data, summarised in table 3 : (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. Example quotes are referred to in the text and given in full in tables 4, 5 and 6 (quotes=Q).

Main themes and subthemes

Quotes illustrating theme 1

Quotes illustrating theme 2

Quotes illustrating theme 3

Theme 1: lack of consistent approaches in case-finding processes

Hospitals have their own systems and processes for case-finding. These varied in terms of who was responsible for the assessments, how cognition was assessed and how case-finding was documented and recorded. A diverse range of staff were involved in undertaking case-finding assessments. This included junior doctors during admission in emergency departments, clinical staff on the wards and in some cases hospitals employed staff who were not part of the team caring for the patient to track down patients who had not been assessed, to check documentation and ensure assessments were completed (Q1). The range of staff involved meant that non-compliance was a problem, particularly within specialties which did not prioritise case-finding (Q2), with regional differences in specialist staff availability, and some hospitals experiencing difficulty in recruiting geriatricians or dementia specialist nurses.

There was no standard cognitive assessment tool used across different hospitals or even across departments within some hospitals where specialties had their own preferences for certain assessment tools (Q3). Although most hospitals usually assessed a patient’s cognition only once (eg, on admission), some hospitals repeated the assessments before discharge.

There was no standard hospital information technology (IT) system for capturing case-finding data. Individual hospitals had developed their own systems, often inflexible, not fit for purpose or constantly evolving to ensure integration with other systems. This impacted on how case-finding information was documented and recorded, including change across time, resulting in variable and missed information on discharge summaries sent to GPs. Although IT systems were designed to make the collecting of certain data mandatory, problems with system design and functionality meant that fields were not always completed (Q4). Systems were also sometimes inflexible meaning that additional information could not be included. One member of hospital staff said she found the process of case-finding inflexible and not allowing for individual professional judgement (Q5).

Theme 2: barriers between primary care and secondary care which impact on case-finding outcomes

A number of barriers emerged between primary care and secondary care that affected how case-finding outcomes were communicated from hospital to GP and subsequent follow-up of patients in primary care.

Poor communication of case-finding information from secondary care to primary care made it difficult for GPs to make informed judgements about patient care. Many GPs reported that discharge summaries were inconsistent and omitted essential case-finding information, for instance, the type of cognitive assessment used, the patient’s assessment score or instructions for follow-up and referral (Q6, Q7). Some GPs had concerns about the reliability of the scores and felt it was important to know who had done the assessment; information was not included in discharge summaries or letters. There was variation in type and amount of detail provided from hospitals which was particularly apparent to GPs whose populations attend more than one hospital. In general, different assessment tools were used in secondary care and primary care, meaning that GPs were less familiar with those used in hospitals and had difficulty interpreting scores (Q8). In contrast to some reportedly sparse discharge letters, several GPs said that some hospitals electronically generated discharge summaries which were too long, making it difficult to locate important and relevant information (Q9).

A number of GPs reported that a lack of access to hospital test results led to repeat investigations and duplication of effort. They raised concerns that not only was it not cost-effective to repeat tests already done in hospital (Q10), but also that this can be particularly difficult for older patients. Some GPs suggested that hospitals could carry out a full range of investigations with patients during their hospital stay and that referrals to memory services could be expedited if all test results were automatically transferred from hospitals to GPs and memory services (Q11). Some remembered this as having worked more smoothly years before dementia case-finding or even memory clinics were introduced (Q12). Within secondary care, some shared the view that hospitals were well placed to make direct referral for further assessment through liaison psychiatry teams if available (Q13, Q14, Q15).

There was a lack of clarity about the roles and responsibilities between primary care and secondary care. Some GPs expressed frustration that secondary care identified patients as warranting ‘cause for concern about cognition’ and then passed the responsibility to primary care without initiating any investigation or treatment plan (Q16). It was not always clear to GPs who should refer patients to memory services and sometimes patient follow-up was missed during the transition from secondary care to primary care (Q17).

Theme 3 perceptions of rationale, aims and impacts of case-finding

Primary and secondary healthcare professionals commented consistently that the drive for case-finding was political and financial, rather than based on clinical rationale or an evidence base. Case-finding had become an indicator of a hospital’s performance, and the financial incentives were a key motivator for hospitals to complete case-finding (Q18). In addition, hospital staff were concerned that the outcomes of the policy were unknown as, in general, staff had no way of knowing if patients were followed up by their GP or referred on to memory services postdischarge (Q19). One hospital reported that they followed up patients after discharge through a care of the elderly outpatients’ clinic at the hospital (Q20). Several hospital staff were concerned that patients were not being followed up by their GP and suggested that instead hospitals should refer patients directly to memory services.

There were conflicting attitudes between primary and secondary care staff regarding the value of case-finding. Overall, hospital staff thought that case-finding had increased the identification of patients with cognitive impairment. They felt it was an effective way of capturing those people who might not present to general practice. For example, those who have no informal support network to flag up cognitive issues or who were reluctant to seek help (Q21). They felt dementia case-finding helped improve diagnosis rates, enabled patients to be put on an appropriate care pathway and increased the likelihood that appropriate community services could then be put in place (Q22). In contrast, many GPs did not think providing patients with a dementia diagnosis was a priority per se and would discuss the implications of a diagnosis (including perceived and actual negative impacts) with patients and their relatives before deciding whether to refer to memory services (Q23).

Many hospital staff valued case-finding because it has raised awareness about dementia among secondary care staff across different medical specialties. Many hospitals have implemented dementia-friendly initiatives and improved staff training around dementia in an effort to improve care for patients with dementia (Q24). However, there was a clear consensus that training around distinguishing delirium from dementia needed to be improved (Q25).

Most GPs did not think hospitals were appropriate environments for assessing patients’ cognition as acute conditions, medication or delirium could lead to low or imprecise assessment scores, and they felt that a community setting was more likely to lead to a true assessment of a patient’s cognition. In fact, they reported a high level of false-positives in case-finding reports and said following up false-positives increased their workload (Q26). They felt a tick-box approach to case-finding resulted in patients being flagged as a consequence of delirium at the time of admission assessment (Q27) without further assessment before discharge. GPs in particular had concerns about the risk of mislabelling people with dementia and the resultant unwelcome consequences of diagnosis. Patients with a ‘known dementia’ are excluded from the dementia case-finding process, but some hospital staff also raised concerns that some patients might be incorrectly labelled as having dementia by junior staff without appropriate expertise (Q28).

Hospital staff reported mixed impacts of case-finding for patients and families. Families can be relieved that someone is taking notice of their relative’s memory problems (Q29) but assessments can sometimes be distressing for patients. Both primary and secondary care staff thought that case-finding needs to be communicated sensitively to patients and carers (Q30, Q31). GPs felt that the social stigma associated with dementia meant that discussions about diagnosis needed to be approached sensitively by trained and skilled staff. It was viewed as unhelpful and distressing for patients to see the word ‘dementia’ in discharge summaries (Q32, Q33). A negative impact on families can be that case-finding can raise expectations of help, only to then find that there is no treatment and availability of services is limited.

Overall GPs were less positive about the benefits of case-finding than clinicians in secondary care. Many thought that case-finding was a tick-box exercise which had little impact on improving diagnosis rates or the subsequent care for people with dementia (Q34). GPs felt that they were better placed to carry out cognitive assessments as they are in regular contact with older patients and can discuss memory referral and dementia diagnosis with the patient and their family. They believed they were usually already aware of a patient’s cognitive impairment (Q35, Q36).

Many of the GPs commented that there is very little postdiagnosis support for patients and their families, a key factor influencing their views on the value of a dementia diagnosis (Q37). The shifting patterns of support from services and the voluntary sector makes it difficult for GPs to keep track of what is available, although hospital staff had an expectation that GPs would know. GPs had particular concerns about resources being diverted away from other services for case-finding and were reluctant to raise concerns or expectations with patients and their families when treatment options were so limited (Q38, Q39).

Hospital staff suggested that dementia case-finding was increasing the pressure on memory clinics and mental health services due to the numbers of patients being identified as having potential cognitive problems. In contrast, GPs did not think hospital case-finding has increased referrals to memory clinics or impacted on diagnosis rates from their own service (Q40). Some commented that longer waiting times for memory services were due to reduced funding.

Dementia case-finding in hospitals aims to improve the recognition of dementia among older patients enabling a ‘timely’ diagnosis and planning of appropriate treatment and care. This study explored the approaches to dementia case-finding being implemented in acute hospitals in the East of England and explored the views of primary and secondary care staff regarding the benefits and challenges of case-finding for dementia. Our analysis showed that hospitals had developed and implemented different processes in terms of how, where and when they assessed patients’ cognition and in how they recorded and reported the results to GPs. The quality and quantity of the data captured from case-finding depended on the priorities of the wide variety of staff involved and on the effectiveness of individual hospital IT systems.

There appeared to be considerable variation between hospitals such that it was unclear what postdischarge pathway there was, if any, for patients who had been identified as a result of case-finding. Instead there was evidence of poor communication of case-finding outcomes from hospital to GP, and a lack of clarity for GPs regarding who was responsible for referral to memory services—hospitals or GPs. Concerns that patient referral could be missed during transitions between primary care and secondary care prompted some healthcare professionals in both primary care and secondary care to suggest hospitals directly refer patients to memory services.

We found that case-finding has raised awareness about dementia within hospitals, but there are still gaps in staff training around the identification of delirium which is often undetected in hospitals 38 and increases the likelihood of reporting false-positives and patient misdiagnosis. 39 Both dementia and delirium are intricately linked and should be considered together when assessing patients’ cognition and when developing policy. 32 Guidelines are increasing recognition of delirium 40 41 but there is still a lack of consensus on the assessment and diagnosis of delirium superimposed on dementia. 42 In part but not only due to such difficulties, primary and secondary care staff were polarised in their views about the value of providing patients with a dementia diagnosis.

Many GPs in our study were opposed to hospital dementia case-finding and this is consistent with other research where clinicians have been reluctant to diagnose dementia because of the risks of misdiagnosis, the negative implications of stigma and impacts on families. 43 44 GPs in our study believed, as others have argued, 35 that they are best placed to assess their patients’ cognition since they have knowledge of the patient and their family as well as the skills to make the judgement if a patient will benefit from a diagnosis of dementia.

Many GPs were more concerned with the lack of postdiagnosis support and raising patients’ and relatives’ expectations about treatment options and that case-finding had diverted resources away from community services. Given that drug treatments for dementia are limited, the benefits of an early diagnosis of dementia are debated. 35 45 The stigma of a dementia diagnosis can cause patients and families to hide their symptoms and negatively affect one’s identity, 46 concerns that previous studies have also highlighted from views of patients, carers and the general public as well as professionals. 47 48 This study also shows that healthcare professionals view case-finding as a politically and financially driven initiative with little or no evaluation of the outcomes. 30 33 44 From the limited research to date on the impact of policies aiming to increase dementia diagnosis rates in general practice, there is insufficient evidence of effect 49 and even a suggestion that when referrals from general practice for dementia assessment increased, the proportion among these who were subsequently diagnosed with dementia fell. 50

Previous research has shown that hospital staff felt underprepared to care for older patients with dementia or delirium, 39 and improving recognition of these often co-existing conditions is one of the considerable challenges faced in acute settings. 32 One of the strongest perceived benefits of dementia case-finding mentioned by hospital staff in our study was the awareness raising of dementia in hospitals. It is unclear to what extent this has been due to case-finding itself or to an overall push on dementia care: for 3 years the Department of Health’s national dementia Commissioning for Quality and Innovation included separate targets for staff training and supporting relatives of patients with dementia. This study did not address impacts on inpatient care; hospital staff who were interviewed recognised their experience of dementia case-finding was only in the inpatient setting and that the impacts after discharge were largely unknown to them.

This study provides new insights into current practice and the views of primary and secondary care clinicians. This was a qualitative study conducted in the East of England and some consideration should be given to the transferability of the results to other regions of the UK and other countries. Although the funding structures that have encouraged hospital dementia case-finding here are specific to the UK’s health service, moves to promote case-finding across health settings, including in hospitals, affect many other countries. 51 52 The healthcare professionals we spoke to were self-selecting, many of whom had a specific interest in dementia and their views may not reflect those of their colleagues. We purposively recruited hospital staff who were directly involved in case-finding and consequently they may be more positive about the initiative than those not directly involved. There is a possibility that the GPs who volunteered to participate may be more or less dissatisfied with case-finding than non-responders.

This research is part of a wider study 36 which is also exploring the views of older people whose GPs were advised to review their cognition after a recent hospital admission, their relatives’ attitudes to hospitals routinely memory testing older patients and reported experiences of follow-up after discharge. IT limitations and information governance restrictions in the UK currently prevent the use of routine data to examine individual trajectories. If available, these data could help to answer some of the questions raised by both primary and secondary care clinicians in our research which are beyond the scope of this small qualitative study. Some GPs’ comments on the negative impacts of repeated service re-organisation highlighted the value of institutional memory. Targets for inpatient case-finding have never attracted media attention so hospitals avoided the heated debate on the ethics of a short-lived funding scheme in general practice that paid per dementia diagnosis, 53 but the introduction of any costly initiative without evidence also raises ethical questions. With public and voluntary sector resources so stretched, cost-effectiveness and cost–benefit research is a priority that could address GPs’ particular concerns about funding supporting an unproven intervention to increase diagnosis rates while services to support people with a diagnosis are so scarce.

Conclusions

This study highlights the plethora of approaches to dementia case-finding across hospitals in the East of England and how this impacts on the communication of case-finding outcomes from hospital to GP and subsequent follow-up in primary care. Information communicated to primary care needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care, but this intended follow-up in primary care further requires access to options for postdiagnostic support. Above all, there is a need to evaluate the impact on health and well-being outcomes for patients identified by dementia case-finding and health economic outcomes for health and care services across settings so as to inform the evidence base that is currently lacking.

Acknowledgments

The authors would like to thank Ms Marion Cowe, Dr Paul Millac, Mr Barry Plumpton and Mr John Willmott, members of the Patient Involvement in Research Group at the University of Hertfordshire who acted as the User Reference Group for the study.

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Contributors JF, FB, CB, and CF wrote the protocol. A-MB and JF collected the data. A-MB, JF and FB analysed the data. A-MB wrote the first draft of the manuscript and is the corresponding author. All authors contributed to the writing of the manuscript and approved its content.

Funding This article paper presents independent research funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research & Care (CLAHRC) East of England, at Cambridgeshire and Peterborough NHS Foundation Trust.

Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Competing interests None declared.

Patient consent Not required.

Ethics approval Ethical approval was obtained from The University of Hertfordshire Ethics Committee (HSK/SF/UH/02005).

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

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Care considerations for persons with early-onset dementia: A case studies analysis

Research output : Contribution to journal › Article › peer-review

Persons with early-onset dementia are a growing subpopulation of persons with dementia. Persons with early-onset dementia are more vulnerable to negative societal-and health care-related effects of dementia. Four case studies are presented. Identified themes are (1) coping with the stigma of dementia diagnosis; (2) lack of access to health care benefits and community-based services; (3) loss of income, work roles, and related benefits; (4) loneliness and isolation; (5) difficulties in meeting the safety needs of those who are physically active; (6) challenges in finding appropriate long-term care placement; and (7) caregiver difficulties. Implications for future studies are described.

  • Early-onset
  • Quality of life

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  • Person Nursing and Health Professions 100%
  • Analysis Nursing and Health Professions 100%
  • Case Study Nursing and Health Professions 100%
  • Dementia Nursing and Health Professions 100%
  • Healthcare Psychology 100%
  • Caregiver Psychology 50%
  • Loneliness Psychology 50%
  • Health Service Nursing and Health Professions 33%

T1 - Care considerations for persons with early-onset dementia

T2 - A case studies analysis

AU - Rose, Karen

AU - Yu, Fang

AU - Palmer, Janice L.

AU - Richeson, Nancy E.

AU - Burgener, Sandy C.

PY - 2010/7

Y1 - 2010/7

N2 - Persons with early-onset dementia are a growing subpopulation of persons with dementia. Persons with early-onset dementia are more vulnerable to negative societal-and health care-related effects of dementia. Four case studies are presented. Identified themes are (1) coping with the stigma of dementia diagnosis; (2) lack of access to health care benefits and community-based services; (3) loss of income, work roles, and related benefits; (4) loneliness and isolation; (5) difficulties in meeting the safety needs of those who are physically active; (6) challenges in finding appropriate long-term care placement; and (7) caregiver difficulties. Implications for future studies are described.

AB - Persons with early-onset dementia are a growing subpopulation of persons with dementia. Persons with early-onset dementia are more vulnerable to negative societal-and health care-related effects of dementia. Four case studies are presented. Identified themes are (1) coping with the stigma of dementia diagnosis; (2) lack of access to health care benefits and community-based services; (3) loss of income, work roles, and related benefits; (4) loneliness and isolation; (5) difficulties in meeting the safety needs of those who are physically active; (6) challenges in finding appropriate long-term care placement; and (7) caregiver difficulties. Implications for future studies are described.

KW - Care needs

KW - Dementia

KW - Early-onset

KW - Quality of life

KW - Resources

UR - http://www.scopus.com/inward/record.url?scp=77958077205&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=77958077205&partnerID=8YFLogxK

M3 - Article

AN - SCOPUS:77958077205

SN - 1936-3001

JO - Alzheimer's Care Today

JF - Alzheimer's Care Today

  • Open access
  • Published: 19 October 2023

Outcomes and cost analysis of patients with dementia in the intensive care unit: a population-based cohort study

  • C. Dziegielewski 1 ,
  • SM. Fernando 2 , 3 ,
  • C. Milani 4 ,
  • R. Mahdavi 4 ,
  • R. Talarico 4 ,
  • LH. Thompson 4 ,
  • P. Tanuseputro 4 , 5 , 6 , 7 &
  • K. Kyeremanteng 2 , 6  

BMC Health Services Research volume  23 , Article number:  1124 ( 2023 ) Cite this article

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Dementia is a neurological syndrome affecting the growing elderly population. While patients with dementia are known to require significant hospital resources, little is known regarding the outcomes and costs of patients admitted to the intensive care unit (ICU) with dementia.

We conducted a population-based retrospective cohort study of patients with dementia admitted to the ICU in Ontario, Canada from 2016 to 2019. We described the characteristics and outcomes of these patients alongside those with dementia admitted to non-ICU hospital settings. The primary outcome was hospital mortality but we also assessed length of stay (LOS), discharge disposition, and costs.

Among 114,844 patients with dementia, 11,341 (9.9%) were admitted to the ICU. ICU patients were younger, more comorbid, and had less cognitive impairment (81.8 years, 22.8% had ≥ 3 comorbidities, 47.5% with moderate-severe dementia), compared to those in non-ICU settings (84.2 years, 15.0% had ≥ 3 comorbidities, 54.1% with moderate-severe dementia). Total mean LOS for patients in the ICU group was nearly 20 days, compared to nearly 14 days for the acute care group. Mortality in hospital was nearly three-fold greater in the ICU group compared to non-ICU group (22.2% vs. 8.8%). Total healthcare costs were increased for patients admitted to ICU vs. those in the non-ICU group ($67,201 vs. $54,080).

Conclusions

We find that patients with dementia admitted to the ICU have longer length of stay, higher in-hospital mortality, and higher total healthcare costs. As our study is primarily descriptive, future studies should investigate comprehensive goals of care planning, severity of illness, preventable costs, and optimizing quality of life in this high risk and vulnerable population.

Peer Review reports

Dementia is a common neurological syndrome that affects the aging population. It is estimated that there are nearly 6 million adults aged 65 and older are currently living with Alzheimer’s dementia in the United States [ 1 ]. This age group is expected to comprise 20% of the population by 2030, nearly doubled from 2010, which will lead to increased rates of dementia diagnoses [ 2 , 3 ]. Patients with dementia utilize acute care hospital services twice as much as age-matched patients without dementia [ 3 , 4 , 5 , 6 , 7 ]. Several studies have demonstrated that patients with dementia have higher rates of ICU admissions, and it is expected that they will account for up to 25% of ICU admissions by the end of 2020 [ 8 , 9 ]. Dementia incurs substantial costs to the healthcare system—upwards of $150 billion in a year in the U.S. With the aging population, ICU costs are expected to increase by over 80% by 2026 [ 10 , 11 , 12 , 13 ]. The compound of an increasingly older population with increasing rates of dementia diagnoses may result in an escalating demand for critical care and rising costs, which requires an evaluation of healthcare expenditure in this patient population.

While it has been shown that dementia results in increased healthcare costs, there is limited research evaluating ICU costs for patients with dementia. Previous population-based studies have described conflicting data on this, some suggesting dementia results in increased costs while others report reduced costs due to decreased length of stay [ 9 , 14 ]. Most of these studies were conducted in smaller, institutional cohorts, and costs after admission were not investigated. Furthermore, there is limited literature available describing functional outcomes of patients with dementia after ICU stay. Critically ill patients with dementia often experience increased frailty post discharge, and are at increased risk of delirium and further cognitive decline, which highlights the necessity of establishing early goals of care and determining who may benefit from ICU stay [ 6 , 8 , 9 , 15 ]. We sought to describe the characteristics and outcomes of patients with dementia in the ICU as well as non-ICU hospital settings, and perform a comprehensive cost analysis of both inpatient and outpatient costs after admission.

Studies conducted at ICES (formerly the Institute for Clinical Evaluative Sciences) using administrative data fall under Sect. 45 of the Personal Health Information Protection Act of Ontario, and do not require research ethics board approval. Studies at ICES do not require informed consent and study data is anonymized before its use.

Data sources and setting

We conducted a retrospective observational population-based cohort study in Ontario, Canada (population 14.6 million). Within Ontario’s single payer healthcare system, all publicly funded healthcare services, physician, hospital, and demographic information for residents are recorded in these databases. These datasets were linked using unique encoded identifiers, and analysed at ICES, an independent, non-profit research institute whose legal status under Ontario’s health information privacy law allows it to collect and analyse healthcare and demographic data, without consent, for health system evaluation and improvement [ 16 ]. Data contained in ICES is complete, with the exception of emigration from Ontario, which represents approximately 0.5% of patients per year [ 17 ]. Databases were linked and then anonymized at the individual level at ICES (Additional File Table  1 ).

Patient population

The study population included all patients aged 65 years or older with a previous dementia diagnosis and a hospital stay from April 1, 2016 to March 31, 2019. We identified adult patients admitted to an ICU setting during the study period by using previously validated algorithms from the Canadian Institute for Health Information Discharge Abstract Database (DAD) and methods used by Scales et al. [ 18 , 19 , 20 ]. There has been consistency among hospitals in Ontario, with specificity of greater than 95% for the majority of hospitals studied [ 20 ]. We also identify patients not requiring an ICU admission (non-ICU group). For patients with multiple ICU admissions within this timeframe, only the first ICU admission was included. Transfers to different hospitals were included in the same episode of care. Patients were excluded if they were younger than 65 years of age or older than 105 years at the time of the index assessment, the date of admission or date of discharge were missing, or if they were not Ontario Health Insurance Plan (OHIP) eligible during hospital admission or follow-up.

Comorbid conditions were presented using the Charlson comorbidity score, a score calculated based on a list of medical conditions a patient has within hospital records [ 21 ]. We identified complex chronic diseases among our cohort, using previously described methods [ 18 ]. All other conditions were based on the presence of any one inpatient hospital diagnostic code, or two or more outpatient physician billing codes within a 2-year period, using relevant ICD, Version 9 (ICD-9) and ICD-10 codes (Additional File Table  2 ). We assessed palliative care involvement using previously validated methods by Webber et al., in which patients either had a palliative care diagnosis, admission to palliative care service, or involvement of a palliative care specialist based on billings claims during their hospitalization [ 22 ]. Outpatient and palliative care home services would not be captured by this algorithm.

We identified patients with dementia using the following criteria: (1) diagnosis of dementia in a previous hospitalization (obtained from the DAD), or (2) three or more physician billing claims at least 30 days apart in a two-year period (obtained from the OHIP claims database), or (3) prescription of a cholinesterase inhibitor (obtained from the ODB database), or (4) documentation of dementia or Alzheimer’s disease AND Cognitive Performance Scale (CPS) score greater than or equal to 2 in index assessment or in any previous RAI assessment, including those administered for complex continuing care and long-term care services (CCRS database) and home care services (RAI-HC database). These criteria have been previously shown to have high positive predictive value and have been applied in several studies [ 23 , 24 ]. For patients who had dementia and underwent CPS and RAI assessment in complex continuing care, long-term care, or home care, severity of cognitive impairment, including functional impairment in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), were described (Additional File Table  5 ).

Outcome variables

The primary outcome variable was mortality. Secondary outcomes included ICU and hospital LOS, discharge disposition, hospital readmissions, and healthcare costs. Patients were also followed up for up to one year post-index admission to determine if there were recurrent ED visits, or re-admissions to hospital or ICU. The healthcare visits post-index admission were censored for death. We determined discharge disposition using a hierarchy approach (Additional File Table  6 ).

We obtained the total and sector-specific direct healthcare costs accumulated in the year following the date of the index ICU admission (including the admission itself). As all healthcare costs are absorbed by OHIP, these were records of healthcare paid for by the Ontario Ministry of Health (MOH). We estimated the costs associated with each record using previously described costing guidelines [ 25 ]. Briefly, we’ve taken a payer (MOHLTC) costing perspective, using person-level health care expenditures that accounts for data for health care utilization and cost information per use. Cost information for sectors (e.g., hospitals, complex continuing care, rehab) that have global budgets (e.g., by institution or by health region) were determined using a top-down approach through case-mix methodology. Sectors that have fee payments associated with each use (e.g., drug cost, or cost paid out to physician) had costs estimated directly. These costs included index hospital admission up to one year after admission. We expressed all costs in 2020 Canadian dollars, and past costs were adjusted for inflation using the yearly Consumer Price Index reported by Statistics Canada [ 26 ].

Statistical analysis

We conducted statistical analysis using SAS Enterprise Guide 7.1 (SAS Institute Inc., Cary, NC, USA). We presented descriptive statistics as percentages, mean (with standard deviation), or median (with interquartile range), as appropriate. We used chi-square test or Fisher’s exact test (categorical variables) or Mann-Whitney U test (parametric variables). We used logistic regression to model hospital survival as an outcome in the total patient cohort. We also used logistic regression to model ICU admission in the patient cohort that had data on severity of cognitive impairment and functional status available. The predictor variables of interest were age, sex, income quintile, Charlson score, number of ED and hospital visits before the index admission, as well as the presence of the most prevalent comorbidities. Results are presented as odds ratios (OR) with 95% confidence intervals (CI). P-values of < 0.05 were considered statistically significant.

We identified a total of 114,844 patients with dementia who met inclusion criteria. Of these, 11,341 (9.9%) were admitted to the ICU and 103,503 (90.1%) were admitted to non-ICU hospital settings. Baseline characteristics for both patient groups are described in Table  1 . Patients were younger in the ICU, compared to those outside of the ICU (mean age 81.8 [7.53] years vs. 84.2 [7.57] years, p  < 0.001). The Charlson comorbidity index score was ≥ 3 in 22.8% of patients in the ICU group, and 15.0% in the non-ICU group ( p  < 0.001).

Outcome variables are listed in Table  2 . Mean total hospital LOS for patients was greater in the ICU group, compared to the non-ICU group (19.6 [43.2] vs. 14.0 [34.8], p  < 0.001). There was no significant difference in delirium between the two groups (18.9% vs. 19.1%, p  = 0.62). In the ICU group, 26.6% of patients were mechanically ventilated, compared to 0.4% in the non-ICU group ( p  < 0.001). There were higher rates of death in hospital in the ICU group compared to non-ICU group (22.2% vs. 8.8%, p  < 0.001). Survival at one-year post-discharge was 55.8% in the ICU group, compared to 63.7% in the non-ICU group ( p  < 0.001). For the ICU group, 62.9% were discharged to a disposition other than home without homecare, in comparison to 76.4% for the non-ICU group ( p  < 0.001). Notably, less than 15% of patients in both groups were discharged home without homecare (14.9% for ICU vs. 14.8%, for non-ICU group, p  < 0.001). There was more time spent at home after discharge from the ICU rather than discharge from non-ICU hospital settings (mean 192.7 [162.7] days vs. 178.3 [161.5] days, p  < 0.001). Nearly twice as many patients (9.9% vs. 5.0%, p  < 0.001) were re-admitted to the ICU after index hospitalization.

Data on severity of cognitive impairment and functional status was available for 5,571 (49.1%) of patients in the ICU group, and 60,325 (58.3%) of patients in the non-ICU group. Severity of cognitive impairment and functional status for patients in both groups is outlined in Table  3 . There were more patients with moderate-severe cognitive impairment in the non-ICU group, compared to the ICU group (54.1% vs. 47.5%, p  < 0.001). There were more patients with severe functional impairment in IADLs in the ICU group (39.4% vs. 19.6%, p  < 0.001), but less severe impairment in ADLs, compared to the non-ICU group (17.3% vs. 17.7%, p  = 0.022).

Cost analysis is summarized in Table  4 . Mean inpatient hospital costs were significantly higher in the ICU group, compared to the non-ICU group ($34,660 [$52,870] vs. $20,506 [$28,358], p  < 0.001). Mean long-term care costs were higher in the non-ICU group, in comparison to the ICU group ($12,772 [$20,024] vs. $8,798 [$17,607], p  < 0.001). Mean total healthcare costs were increased for patients admitted to ICU vs. those admitted outside of the ICU ($67,201 [$70,777] vs. $54,080 [$46,141], p  < 0.001). Patients with dementia admitted to the ICU accounted for 12.0% of total healthcare costs, equivalent to approximately $762 million in total healthcare expenditure.

Multivariate logistic regression analysis was performed for hospital survival in the entire patient cohort (Additional File Table  7 ). Being female was associated with a higher likelihood of survival (OR 1.34, CI 1.29–1.39). Conversely, being ≥ 95 in age (OR 0.31, CI 0.28–0.34), admitted to ICU (OR 0.33, CI 0.31–0.34), and having a Charlson score of ≥ 3 (OR 0.39, CI 0.37–0.41) were all factors associated with a lower likelihood of survival. Patients also had a higher likelihood of survival with comorbidities including hypertension (OR 1.27, CI 1.22–1.33), diabetes (OR 1.26, CI 1.21–1.32), and CAD (OR 1.29, CI 1.21–1.38). Subset multivariate logistic regression analysis was performed for patients with data on severity of cognitive impairment and functional status available, with ICU admission as the outcome (Additional File Table  8 ). Patients had a lower likelihood of being admitted to ICU if female (OR 0.89, CI 0.84–0.94), or had moderate-severe cognitive impairment (OR 0.78, CI 0.73–0.82). Having a Charlson score of ≥ 3 (OR 1.67, CI 1.56–1.79) was associated with a higher likelihood of ICU admission. Patients also had a higher likelihood of ICU admission if comorbid with CHF (OR 1.28, CI 1.18–1.38) or CAD (OR 1.13, CI 1.03–1.23), and if they have a prior hospital admission (OR 1.09, CI 1.05–1.13). Age- and sex-stratified 1-year mortality in described in Additional File Table  9 . With mortality assessed for only the ICU cohort (Additional File Tables  10 and 11 ), we find that being ≥ 95 in age (OR 2.35, CI 1.91–2.89), having a Charlson score of ≥ 3 (OR 1.50, CI 1.37–1.63), and moderate-severe cognitive impairment (OR 1.35, CI 1.25–1.45) were all factors associated with a higher likelihood of mortality in those who had an RAI assessment.

In this retrospective population-based cohort study, we describe the characteristics, outcomes, and cost patterns of patients with dementia admitted to the ICU and non-ICU hospital settings. Patients with dementia admitted to the ICU are younger, more comorbid, and less likely to be transferred from home or assisted living institutions. They have a longer total LOS, increased interventions, and higher mortality. They have less severe baseline impairment or functional impairment post-discharge. They were more frequently readmitted to ICU. Patients with dementia admitted to the ICU, despite representing less than 10% of the cohort, incurred higher total healthcare costs, totalling $762 million for our cohort.

We characterize patients with dementia who are admitted to the ICU as younger, more comorbid, more functionally impaired but with less severe cognitive impairment, as compared to those admitted to non-ICU hospital settings. However, they had higher in-hospital mortality, and nearly 50% mortality one year after discharge. Taken together, these findings may suggest that patients with dementia admitted to the ICU are frailer than those outside of the ICU, but had a higher severity of illness resulting in increased mortality. This is in keeping with the reported literature [ 27 , 28 ]. We note that there was no significant difference in income status and rurality between the cohorts, suggesting these social determinants of health do not seem to impact who is admitted to the ICU setting. The higher mortality and increased functional impairment and frailty in patients with dementia in the ICU may suggest against offering aggressive medical management. However, we note these patients have lower rates of cognitive impairment, suggesting they may have been risk-stratified prior to admission as to who would benefit from ICU care. We note that more severe cognitive impairment in the ICU cohort is associated with increased mortality, and should be considered in the process of evaluating who may benefit from more aggressive medical management. The decision of offering ICU care also needs to be considered in the context of other variables that are associated with increased mortality, which in our study included older age, male sex, and multi-morbidity, consistent with previous studies and closely interlinked with frailty [ 29 , 30 ]. In our study, there was a very low rate of palliative care involvement in both cohorts (< 2%); however, this primarily reflects palliative care admissions rather than consultations, the latter of which is often a source of advanced care planning. Additionally, perhaps goals of care discussions took place prior to hospitalization, or outside of formal palliative care involvement, given the well-known repercussions of increased mortality, frailty, and worsened quality of life in patients with dementia [ 31 ]. However, we found that patients were more likely to be admitted to the ICU if they had a prior hospital admission, and nearly twice as likely to be re-admitted to the ICU. Goals of care discussions have the potential to optimize quality of care while reducing futile care, and are particularly important in this vulnerable population [ 32 ]. Further research to stratify which patients with dementia have increased survival benefit and may benefit from ICU admission is necessary, as well as the impact of advanced care planning on ICU admissions in this population.

We demonstrate that patients with dementia who are critically ill admitted to the ICU incur increased costs in comparison to those admitted to non-ICU hospital settings. For our cohort, this is likely in part driven by increased total LOS and increased interventions seen in the patients admitted to ICU. Previous studies have described the impact of LOS and interventions such as invasive mechanical ventilation in prolonging LOS for patients in critical care [ 33 , 34 , 35 , 36 ]. Dispositioning costs were the second highest driver of costs overall. Costs were increased for critically ill patients needing rehabilitation and complex continuing care, but conversely higher for long-term care in the non-ICU group. Patients with dementia become frailer after hospitalization, therefore requiring costly dispositioning for increased supports in their post-discharge recovery [ 37 ]. As patients had more severe cognitive impairment in the non-ICU group, this may explain the need for institutionalization. This highlights the importance of increasing the number of community supports to improve flow in the hospital and reduce unnecessary acute care stay [ 38 ]. Furthermore, it represents the need for early goals of care discussion and palliative care involvement. Palliative care has been linked to reducing ICU LOS and costs, and early goals of care discussions have been associated with reduced mortality, ICU use, and hospitalization [ 39 , 40 , 41 ]. Future studies should explore strategies to mitigate costs while optimizing quality, patient-centered care for this vulnerable population.

This study has several limitations. Firstly, we utilized health administrative data which lacks certain clinical variables such as severity of illness or admission diagnoses, as well as social determinants of health such as ethnicity data. While we include comparative analysis, there are limitations in making certain conclusions given these lack of clinical variables, such as whether patients admitted to the ICU have higher acuity accounting for the decision to offer ICU care. The use of coding data for various diagnoses such as delirium likely underestimates the true incidence in our population, limiting interpretation of its impact in both ICU and non-ICU settings. We note a small proportion of patients in the non-ICU setting received invasive ventilation; this is likely because therapy was initiated in this setting and was coded as such, before the patient was ultimately transferred to the ICU for ongoing care, which affects analysis of these results. Furthermore, there is a lack of certain variables such as vasoactive medications to explain reasons for ICU admission. Location prior to hospitalization, dementia severity, and functional data was available for a subset of patients only, which limits our interpretation and generalizability of how these variables impact ICU admission. Furthermore, while palliative care involvement during hospitalization was available, information about goals of care discussions and palliative care involvement prior to hospital admission was unavailable, which would be tremendously valuable and better inform if early discussions influence ICU or non-ICU hospital admission in this vulnerable patient population. Cost data was available for several categories; however, separate ICU and non-ICU hospital costs, as well as other cost breakdowns such as procedural interventions and outpatient palliative care, were not obtainable, which could help identify major drivers of increased cost. Furthermore, while our cost data allows for some comparison between the cohorts, there are differences in baseline patient characteristics, and so implications per patient encounter must be interpreted with caution. Finally, the retrospective nature of this study allows association, but not causation, to be determined.

Patients with dementia admitted to the ICU are younger, more comorbid, with longer LOS, increased interventions, and higher mortality, as compared to those admitted to non-ICU hospital settings. They have less severe cognitive and functional impairment post-discharge. Patients with dementia admitted to the ICU incurred higher total healthcare costs, as compared to those not admitted to the ICU. As our study is largely descriptive and has associated limitations, decisions regarding pursuing critical care should be comprehensive and include informed goals of care discussions with consideration of the patient’s frailty, severity of illness, comorbidities, and cognitive status. Given the increasing prevalence of dementia and escalating demands for critical care, future studies should investigate preventable costs and ways to optimize quality of life while reducing futile care in this patient population.

Data Availability

All data generated or analyzed during this study are included in this published article [and its supplementary file].

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CD, SMF, PT, LHT, and KK informed the study design. MR, CM, and RT performed data collection and analysis. CD interpreted data and wrote the majority of the manuscript. All authors read and approved the final manuscript.

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Dziegielewski, C., Fernando, S., Milani, C. et al. Outcomes and cost analysis of patients with dementia in the intensive care unit: a population-based cohort study. BMC Health Serv Res 23 , 1124 (2023). https://doi.org/10.1186/s12913-023-10095-5

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DOI : https://doi.org/10.1186/s12913-023-10095-5

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Dementia case study with questions and answers

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Dementia case study with questions and answers

Common dementia exam questions for medical finals, OSCEs and MRCP PACES

The case below illustrates the key features in the assessment of a patient with dementia or undiagnosed memory decline. It works through history, examination and investigations – click on the plus symbols to see the answers to each question

Part 1: Mavis

  • Mavis is an 84-year old lady, referred to you in the memory clinic for assessment of memory impairment. She attends in the company of her son and daughter-in-law.
  • On the pre-clinic questionnaire her son has reported a severe deterioration in all aspects of her cognition over the past 12 months.
  • The patient herself acknowledges that there have been memory problems, but feels it is just her short term memory that is an issue.

Question 1.

  • To begin the history, start broadly. Build rapport and establish both the patient’s view on memory impairment (if any) and the family’s (or other collateral history).
  • Patient’s (and collateral) view of memory decline
  • Biographical history
  • Objective view of memory decline (e.g. knowledge of current affairs)
  • Impact of memory decline on day-to-day living and hobbies
  • Social history, including safety and driving
  • General medical history (especially medications)
  • See below for details on these…

Question 2.

  • Is it for everything or are specific details missed out/glossed over?
  • Try to pin down specific details (e.g. names of people/places).
  • At what time in chronological order do things start to get hazy?

Question 3.

  • If under 12 years this will lead to additional point being awarded on some cognitive tests
  • Ask about long term memories, e.g. wedding day or different jobs
  • Then move on to more recent memories, e.g. last holiday

Question 4.

  • If your patient watches the news/read newspapers on a regular basis, ask them to recount the headlines from the past few days.
  • Be sure to look for specifics to prevent your patient masking memory deficiencies with broad statements. For example: “The government are incompetent, aren’t they?!” should be clarified by pinning down exactly why they are incompetent, for example: “Jeremy Hunt”.
  • If they like to read, can they recall plotlines from current books or items from magazines?
  • If they watch TV, can they recount recent plot lines from soaps, or formats of quiz shows?

Question 5.

  • Ask about hobbies and other daily activities, and whether or not these have declined recently.
  • If your patient no longer participates in a particular hobby, find out why: is it as a result of a physical impairment (e.g. arthritis making cooking difficult), or as the result of a loss of interest/ability to complete tasks (e.g. no longer able to complete crosswords/puzzles).
  • Once you have a good idea of the memory decline itself, begin to ask about other features. Including a social and general medical history.

Question 6.

  • Review their social history and current set-up, and also subjective assessments from both patient and family over whether or not the current arrangements are safe and sustainable as they are.
  • Previous and ongoing alcohol intake
  • Smoking history
  • Still driving (and if so, how safe that is considered to be from collateral history)
  • Who else is at home
  • Any package of care
  • Upstairs/downstairs living
  • Meal arrangements (and whether weight is being sustained).
  • Of all these issues, that of driving is perhaps one of the most important, as any ultimate diagnosis of dementia must be informed (by law) to both the DVLA and also the patient’s insurers. If you feel they are still safe to drive despite the diagnosis, you may be asked to provide a report to the DVLA to support this viewpoint.

Now perform a more generalised history, to include past medical history and – more importantly – a drug history.

Question 7.

  • Oxybutynin, commonly used in primary care for overactive bladder (anticholinergic side effects)
  • Also see how the medications are given (e.g. Dossett box)
  • Are lots of full packets found around the house?

Part 2: The History

On taking a history you have found:

  • Mavis was able to give a moderately detailed biographical history, but struggled with details extending as far back as the location of her wedding, and also her main jobs throughout her life.
  • After prompting from her family, she was able to supply more information, but it was not always entirely accurate.
  • Her main hobby was knitting, and it was noted that she had been able to successfully knit a bobble hat for her great-grand child as recently as last month, although it had taken her considerably longer to complete than it might have done a few years previously, and it was a comparatively basic design compared to what she has been able to create previously.
  • She has a few children living in the area, who would frequently pop in with shopping, but there had been times when they arrived to find that she was packed and in her coat, stating that she was “just getting ready to go home again”.
  • She had been helping occasionally with the school run, but then a couple of weekends ago she had called up one of her sons – just before she was due to drive over for Sunday lunch – and said that she could not remember how to drive to his house.
  • Ever since then, they had confiscated her keys to make sure she couldn’t drive. Although she liked to read the paper every day, she could not recall any recent major news events.  Before proceeding to examine her, you note that the GP referral letter has stated that her dementia screen investigations have been completed.

Question 8.

  • Raised WCC suggests infection as a cause of acute confusion
  • Uraemia and other electrolyte disturbances can cause a persistent confusion.
  • Again, to help rule out acute infection/inflammatory conditions
  • Liver failure can cause hyperammonaemia, which can cause a persistent confusion.
  • Hyper- or hypothyroidism can cause confusion.
  • B12 deficiency is an easily missed and reversible cause of dementia.
  • This looks for space occupying lesions/hydrocephalus which may cause confusion.
  • This can also help to determine the degree of any vascular component of an ultimately diagnosed dementia.

Part 3: Examination

  • With the exception of age-related involutional changes on the CT head (noted to have minimal white matter changes/small vessel disease), all the dementia screen bloods are reassuring.
  • You next decide to perform a physical examination of Mavis.

Question 9.

  • Important physical findings that are of particular relevance to dementia, are looking for other diseases that may have an effect on cognition.
  • To look for evidence of stroke – unlikely in this case given the CT head
  • Gait (shuffling) and limb movements (tremor, rigidity, bradykinesia)
  • Affect is also important here and may also point to underlying depression
  • Pay attention to vertical gaze palsy, as in the context of Parkinsonism this may represent a Parkinson plus condition (e.g. progressive supranuclear palsy).
  • It is also useful to look at observations including blood pressure (may be overmedicated and at risk of falls from syncope) and postural blood pressure (again, may indicate overmedication but is also associated with Parkinson plus syndromes e.g. MSA)

Part 4: Cognitive Testing

  • On examination she is alert and well, mobilising independently around the clinic waiting room area.  A neurological examination was normal throughout, and there were no other major pathologies found on a general examination.
  • You now proceed to cognitive testing:

Question 10.

  • Click here for details on the MOCA
  • Click here for details on the MMSE
  • Click here for details on the CLOX test

Part 5: Diagnosis

  • Mavis scores 14/30 on a MOCA, losing marks throughout multiple domains of cognition.

Question 11.

  • Given the progressive nature of symptoms described by the family, the impairment over multiple domains on cognitive testing, and the impact on daily living that this is starting to have (e.g. packing and getting ready to leave her own home, mistakenly believing she is somewhere else), coupled with the results from her dementia screen, this is most likely an Alzheimer’s type dementia .

Question 12.

  • You should proceed by establishing whether or not Mavis would like to be given a formal diagnosis, and if so, explain the above.
  • You should review her lying and standing BP and ECG, and – if these give no contraindications – suggest a trial of treatment with an acetylcholinesterase inhibitor, such as donepezil.
  • It is important to note the potential side effects – the most distressing of which are related to issues of incontinence.
  • If available, put her in touch with support groups
  • Given the history of forgetting routes before even getting into the care, advise the patient that she should stop driving and that they need to inform the DVLA of this (for now, we will skip over the depravation of liberty issues that the premature confiscation of keys performed by the family has caused…)
  • The GP should be informed of the new diagnosis, and if there are concerns over safety, review by social services for potential support should be arranged.
  • Follow-up is advisable over the next few months to see whether the trial of treatment has been beneficial, and whether side effects have been well-tolerated.

Now click here to learn more about dementia

Perfect revision for medical students, finals, osces and mrcp paces, …or  click here to learn about the diagnosis and management of delirium.

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February 20, 2024

This article has been reviewed according to Science X's editorial process and policies . Editors have highlighted the following attributes while ensuring the content's credibility:

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Lack of visual imagery does not lead to less pleasure in reading, finds study

by Radboud University

book dog umbrella

When people read a book, they typically imagine the story in their heads. But how do people experience a story if they find it difficult or impossible to imagine what is being described? Cognitive scientist Laura Speed and her colleagues found in an initial study of reading in people with so-called aphantasia that they do not enjoy reading less, but they do become less engaged with a story.

Most people who read a book are absorbed in the world of the story. This is noticeable when they are disappointed when the characters in a film adaptation look different from what they imagined. People with aphantasia, a condition that was only "discovered" in 2015, have difficulty or are even unable to create visual images of concepts, objects or scenes, or recall memories in a visual way. An estimated 5% of the world's population has this condition.

Visual imagery is thought to be involved in various cognitive processes, including language processing . For instance, when we hear the word "red," we create an image of that color in our mind. Studies with brain imaging have shown that visual parts of the brain are activated during language comprehension.

"Interestingly, people with aphantasia do not report impairments in their language skills ," says language scientist Laura Speed. "It is not the case that someone who can't visually imagine 'red' can't understand the word. But visual imagery is associated with how someone experiences a story."

Getting less absorbed

In their study , published in Consciousness and Cognition , Speed and her colleagues Lynn Eekhof and Marloes Mak asked 47 people with aphantasia and 51 people without aphantasia to read a short fiction story. An established visual imagery questionnaire was used to determine whether someone had aphantasia. Participants then had to answer questions about their experience of the story, as well as their general reading preferences and habits.

"It appears that people with aphantasia are less absorbed in the story world and feel less emotional involvement with characters," says Speed. In addition, descriptions of scenery and actions were less appreciated by people with aphantasia than by the control group . "But surprisingly, the groups did not differ in how much they enjoyed the story."

In addition, both groups reported the same number of books they read per year and they also appear to like similar genres of fiction. A number of aphantasics even reported writing fiction themselves.

Other routes

So visual imagery is important for getting absorbed in a story, but people with weak or no visual imagery still enjoy reading. "It seems that visual imagery is not the only way to enjoy a story. The plot or style of language, for example, unlike descriptions of scenery, doesn't require strong visual imagery," says Speed.

"Aphantasic participants in our study reported appreciating these aspects, but not descriptions of scenery. So there are—besides visual imagery—other routes to story enjoyment and language comprehension. What works for some does not necessarily work for others. It is important to explore and understand this diversity in reading approaches."

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Caring for dementia caregivers

Caring for Dementia Caregivers: The Golden Buckeye Center for Dementia Caregiving

by Dr. Mary Beth Happ and Dr. Karen Rose

Claire* contacted the College of Nursing looking for help. Her husband’s dementia had progressed to the point where he could not be left alone, and she was his primary caregiver.

Claire isn’t alone in her situation. Nearly a half-million (493,000) unpaid caregivers provide necessary assistance and in-home care right now to Ohioans living with dementia, providing services valued at more than $13 billion. 1 Although dementia caregiving often involves a network of family and friends 3 , spouses commonly bear much of the caregiving responsibility. Nationwide, this healthcare crisis has reached astonishing numbers – an estimated 6.7 million Americans, most 75 years of age or older, are currently living with Alzheimer’s disease or other types of dementia – and these numbers are expected to increase dramatically as the Baby Boomer generation ages and lives longer than previous generations. Here in Ohio, the number of individuals with Alzheimer’s disease and other types of dementia will reach 250,000 in the coming year.  The effects on individuals, families, healthcare systems and the workplace are staggering.

The Ohio State University College of Nursing has an outstanding cadre of clinical and research faculty specializing in gerontology, brain health and caregiving, putting it in a unique position to answer this particular calling to care. Funded by the Ohio Department of Aging (ODA), the college’s new Golden Buckeye Center for Dementia Caregiving will be the state’s central resource hub for caregivers of Ohioans living with Alzheimer’s disease or other dementias. The center is the first facility in Ohio specifically focused on developing and strengthening the knowledge, skills and supports of those who provide care to their loved ones. Our purpose is to provide dementia caregiving resources and education to family/friend care partners, primary care clinicians and employers/workplaces throughout the state. Programming and resources are accessible in-person and virtually; the center has a website platform for delivering educational modules and resources to caregivers and educational outreach to Ohio communities through partnership with OSU Extension and affiliated public television programming. We involve inter-professional students in center activities and introduce caregiving research opportunities to dementia caregivers who access the center. Additionally, the center engages interprofessional faculty with gerontology expertise from the Colleges of Nursing, Social Work, Medicine, and Arts and Sciences, as well as undergraduate student service organizations interested in supporting the Alzheimer’s disease cause.

Already the Golden Buckeye Center for Dementia Caregiving is helping Ohioans. In Claire’s* case, they were able to connect the family with an adult daytime respite center in her area and post advertisements for nursing students interested in companion care work in the home. The center will continue the conversation with Claire and her husband to make sure they have what they need.

Informal caregivers or “care partners” like Claire are family members or friends who provide instrumental help and support to persons living with dementia (e.g., organizing finances, companionship, grocery shopping, meal preparation, organizing or supervising medications and healthcare appointments, providing safe housing and so on). Those who live with and care for individuals with dementia face many challenges including “physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income and interrupted connections to other activities and friends.” 2 While there are several organizations that provide educational information, support services and guidance to dementia caregivers in Ohio, access varies widely throughout the state. Filtering and understanding the plethora of information can be daunting. Caregiving may be most challenging for those living alone, in rural and underserved communities, immigrants, those caring for persons with developmental disability and members of minority groups.

The Golden Buckeye Center for Dementia Caregiving is part of Ohio’s Alzheimer’s Disease and Other Dementias Resource Program. ODA leads the collaborative with partnership from our College of Nursing, the Ohio Department of Medicaid (ODM), and several other contributing organizations, including the Benjamin Rose Institute on Aging, MemoryLane Care Services, Ohio-based chapters of the Alzheimer's Association, Ohio Council for Cognitive Health, Scripps Gerontology Center at Miami University and the Summit County Combined General Health District. The center also engages with a network of community partners, including OSU Extension, Area Agencies on Aging, the Franklin County Office of Aging, the African American Alzheimer’s and Wellness Association and the student organization Buckeyes Against Alzheimer’s. The center’s physical space at 760 Kinnear Road in Columbus hosts two large, all-purpose rooms suitable for movement/exercise activities with adjoining kitchens, disability-accessible bathrooms and adjacent free parking. The center’s resources will be open to the public later this spring.

Learn more about the Golden Buckeye Center for Dementia Caregiving online or contact us at 800-645-2946 or [email protected] .

Mary Beth Happ , PhD, RN, FGSA, FAAN is distinguished professor of critical care research at The Ohio State University College of Nursing. Karen Rose , PhD, RN, FGSA, FAAN is dean and professor at The Ohio State University College of Nursing. Drs. Happ and Rose serve as co-directors of the Golden Buckeye Center for Dementia Caregiving.

 *“Claire” is a pseudonym

1 Alzheimer’s Association. 2023 Alzheimer’s Disease Facts and Figures 2023. Alzheimers Dement 2023; 19(4).DOI 10.1002/alz13016 https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

2 National Academies of Science, Engineering, and Medicine. Reducing the Impact of Dementia: A Decadal Survey of the Behavioral and Social Sciences. Washington DC: National Academies Press; 2021, Jul 26   https://www.ncbi.nlm.nih.gov/books/NBK574341/

3 Song M, Paul S, Happ MB, et al. Informal caregiving networks of older adults with dementia superimposed on multimorbidity: A social network analysis study. Innovations in Aging 2023; 7(4): igad033. doi: 10.1093/geroni/igad033. PMCID: PMC10184695

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A collective case study of the features of impactful dementia training for care home staff

Claire a. surr.

1 Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, LS1 3HE UK

Michelle Drury

2 Centre for Applied Dementia Studies, University of Bradford, Bradford, UK

Natasha Burnley

Alison dennison, sarah burden, jan oyebode, associated data.

The datasets generated and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request.

Up to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. Little is still known about the most effective approaches to the design, delivery and implementation of dementia training. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia.

An embedded, collective case study was undertaken in three care home provider organisations who had responded to a national training audit. Data collected included individual or small group interviews with training leads, facilitators, staff attending training, managers, residents and their relatives. Observations of care practice were undertaken using Dementia Care Mapping. Training delivery was observed and training materials audited. A within case analysis of each site, followed by cross case analysis using convergence coding was undertaken.

All sites provided bespoke, tailored training, delivered largely using face-to-face, interactive methods, which staff and managers indicated were valuable and effective. Self-study booklets and on-line learning where were used, were poorly completed and disliked by staff. Training was said to improve empathy, knowledge about the lived experience of dementia and the importance of considering and meeting individual needs. Opportunities to continually reflect on learning and support to implement training in practice were valued and felt to be an essential component of good training. Practice developments as a result of training included improved communication, increased activity, less task-focussed care and increased resident well-being. However, observations indicated positive well-being and engagement was not a consistent experience across all residents in all sites. Barriers to training attendance and implementation were staff time, lack of dedicated training space and challenges in gaining feedback on training and its impact. Facilitators included a supportive organisational ethos and skilled training facilitation.

Conclusions

Effective training is tailored to learners’, delivered face-to-face by an experienced facilitator, is interactive and is embedded within a supportive organisational culture/ethos. Further research is needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

Electronic supplementary material

The online version of this article (10.1186/s12877-019-1186-z) contains supplementary material, which is available to authorized users.

Care homes provide care to 19–38% of people with dementia in Western countries [ 1 , 2 ] and up to 80% of people living in care homes are thought to have dementia [ 2 , 3 ]. In order to be able to deliver high quality person-centred care for this group, care home staff need to be provided with appropriate training that supports them to have the right knowledge, skills and attitudes [ 4 , 5 ]. In England, there have been a range of initiatives, led by government over the last ten years to ensure the health and social care workforce receives appropriate dementia training [ 6 – 11 ]. However, in addition to ensuring the availability of training, there is a need to ensure that training is of high quality to provide the best chance of effecting practice change. A number of systematic reviews have examined research on the effectiveness of dementia training for the care home workforce in relation to a range of outcomes including the general benefits of training [ 12 ], impact on resident functional ability and quality of life [ 13 ], improving staff communication skills [ 14 ] and for supporting complex resident behaviours [ 15 , 16 ]. The studies report variable impact of staff training on these outcomes. Training appears to most consistently support improvement of general care home staff skills [ 12 ], communication [ 14 ] and support for residents in activities of daily living [ 13 ]. However, there are inconsistent findings in relation to the impact of training programmes on resident outcomes such as behaviours (e.g. agitation, anxiety, neuropsychiatric symptoms) [ 13 – 16 ] and quality of life [ 13 ]. The reviews generally conclude that there is limited robust evidence for training efficacy due to methodological weaknesses in study designs and lack of follow-up over time. Where studies have included longer follow-up any positive results observed are generally not sustained. Few reviews consider features of effective training. One systematic review examining the challenges to and strategies for implementation of training in practice [ 5 ] identified the key challenges to include low staff attendance, lack of organizational support, and financial limitations. Therefore, there is limited available evidence on the most effective approaches to the design, delivery and implementation of impactful dementia training in care home settings.

The What Works in dementia education and training? (What Works?) study aimed to investigate the elements of an effective approach to dementia training and education for the health and social care workforce. This was achieved through conducting: 1) a systematic literature review of current evidence (see [ 17 ]); 2) a national audit of health and social care providers, commissioners and training providers on currently available dementia training; 3) a survey of staff who had completed programmes reported in the audit to assess their dementia knowledge, attitudes and confidence; 4) multiple case studies [ 18 ] in health and social care settings (general hospitals n  = 3, mental health/community services n  = 3, social care n = 3, general practitioner practices n  = 1) who responded to the audit and whose training met good practice criteria identified from the literature review. In order to ensure enough data could be collected at each site to provide an in-depth picture [ 19 ], we aimed to recruit three case study sites from each setting type. This was deemed feasible within the project resources and timescales but was sufficiently large to permit cross-case comparison.

The study was underpinned by two theoretical models for the evaluation of training. Richards and DeVries’ [ 20 ] Conceptual Model for Dynamic Evaluation of Learning Activities, explores training design and facilitation processes. Kirkpatrick’s [ 21 , 22 ] four-level model for evaluation of training interventions examines 1) learner reaction to training, 2) extent of learning in terms of knowledge, attitudes and confidence, 3) staff behaviour change, and 4) practice results or outcomes.

This paper reports a collective case study of the three social care case studies, which were all undertaken in care home settings.

The case studies aimed to understand the features and contextual factors associated with good practice regarding the design, delivery and implementation of dementia education and training and its impact on care practices.

The research questions addressed were:

  • What models of dementia education and training were sites adopting?
  • How did staff perceive the training?
  • How did the training impact on staff knowledge, attitudes and practices?
  • How did people with dementia and their family members experience care in homes/units where staff had received training?
  • What were the specific barriers and facilitators to effective training implementation?

We employed an embedded [ 23 ], collective [ 19 ] case study design.

Case selection

A ‘case’ was defined as a care home provider organisation, which could include a single care home or multiple sites, as long as staff at all sites accessed the same training programmes. Eighteen social care providers in England and Scotland, including fourteen care home providers and four domiciliary care organisations who had responded to the audit were considered for inclusion. They were shortlisted using a positive deviance approach [ 24 ] by researchers blinded to site identity, and then ranked against a set of good practice criteria. These criteria were developed from the outcomes of the literature review [ 17 ]. They included how comprehensively training covered subjects and associated learning outcomes within the national Dementia Training Standards Framework for England [ 25 ] alongside training length and delivery methods (see Additional file  1 for full criteria and shortlisting process).

We had aimed to include at least one domiciliary care site in the three case studies. However, neither of the two sites which achieved high ratings against the good practice criteria were able to participate due to staffing issues affecting key individuals who would have needed to support the research. The three top ranking care home sites that were approached all consented to participate.

Data collection

Consistent with a multiple case study approach [ 18 ], a range of data types were collected at each site (see Table  1 ) including semi-structured interviews with the dementia training lead, training facilitators and home managers and semi-structured individual or focus group interviews with staff who had attended training. Interviews were facilitated using a topic guide but conducted flexibly by the researcher to gain a thorough understanding of individuals’ experiences and views. Topic guides were unique for each participant type e.g. managers, training leads, training facilitators, staff, but contained questions based around the Richards and DeVries and Kirkpatrick Frameworks including organisational culture and processes (e.g. Could you tell me a bit about your organisation’s training strategy and the place of dementia training within this?), training design and delivery (e.g. What aspects have gone well in organisation and delivery and what has proved more tricky?), reactions (e.g. You’ve all taken part in [insert description] dementia training recently. Could I ask your opinions on the training you received?), learning and behaviour (e.g. Thinking about those team members who received [insert name of training here], can you identify any changes in their knowledge, or their competency in relation to dementia?) and outcomes (e.g. Do you think the training programme is having the impact you hoped for on care? Can you give us some examples?). They were audio recorded and transcribed verbatim, with interviews lasting for 30–60 min and focus group discussions around 60-min. The focus group discussions used the same topic guide but also included vignettes that presented a short story of the experiences of a person living with dementia in a care home in written and pictorial format. Focus group participants were asked to identify examples of good and poor practice contained within the vignettes, which helped to explore their knowledge and attitudes towards dementia care. The vignettes were developed by members of the project’s expert by experience group, which was comprised of people living with dementia and their family members.

Summary of data collected and the research questions it addressed

Each site provided copies of the training materials, which were audited using a good practice in training tool developed by the research team [ 26 ], based on the findings of the systematic review [ 17 ]. This includes items such as content and how well it mapped to the Dementia Training Standards Framework, whether it used interactive delivery methods, accuracy and readability of materials, tailoring to audience and training length. Researchers observed training sessions being delivered to staff, recording data using a qualitative observational template developed by the study team, based on the underpinning theoretical models. Short satisfaction cards, including three fixed (How satisfied are you with this service? How well did the staff understand your feelings and needs? How well were staff able to answer your questions about dementia?) and one open-response question (Any other comments about your care either positive or negative?), were given to care home residents with dementia and/or relatives. Respondents were also invited to take part in a telephone or face-to-face interview to discuss their care experiences. Only one resident in one of the sites completed an interview.

Care was observed in at least one unit of each participating site using Dementia Care Mapping (DCM) [ 27 ]. DCM collects data on residents’ experiences of care including behaviour (from 23 possible codes; Behaviour Category Code – BCC), level of mood and engagement (from a six-point scale (− 5, − 3, − 1, + 1, + 3, + 5: Mood and Engagement Value – ME)) and the quality of staff interactions with residents (Personal Enhancers and Personal Detractors). Up to eight hours of observation over both morning and afternoon periods were conducted by study researchers trained in DCM in public areas of the care home. As dementia training had been provided in all case study sites for a number of years prior to the study and was ongoing during data collection, no data was able to be collected before dementia training commenced. Therefore, analysis focussed on whether the outcomes the training aimed to achieve e.g. person-centred care, skilled communication, resident well-being, were present in the care homes.

Consent and ethical issues

Ethical approval for the study was given by the Yorkshire and the Humber – Bradford Leeds NHS Research Ethics Committee [REC Ref 15/YH/0488]. The research team made the initial approach to participate to the individual who completed the audit earlier in the project, and arranged to visit the care home to meet with key staff such as the owner, training lead, facilitators and unit managers. Once formal written organisational consent from senior management was gained, the researcher visited each site again and gained written informed consent from all study participants. Where a resident lacked capacity to give informed consent, advice on their participation was gained from a relative or staff consultee in accordance with Mental Capacity Act [ 28 ] guidance. Adopting consent processes utilised in previous studies that have included general observations of care practices with people with dementia [ 29 ], verbal approval to record anonymised data was gained from residents and staff prior to DCM observation. In keeping with the principles of process consent [ 30 ] researchers assessed ongoing consent throughout. To ensure all individuals within the care home were aware of ongoing observations posters were displayed in prominent positions on the units before and during observation period, containing a photograph of the researcher and giving details about the study and how and with whom to ask questions or raise a concern.

Data analysis

The study team undertook analysis of the full set of data for each case study site individually followed by cross-case analysis. Interview, focus group and training observation data were analysed using the thematic analysis method, template analysis [ 31 , 32 ] using NVivo 11 [ 33 ]. Starting with a priori themes drawn from the underpinning theoretical frameworks [ 20 , 22 ] a coding template was developed that underpinned data analysis across the whole study. This was achieved through CAS, JO, CS, MD, SB and NB undertaking collaborative coding of three initial transcripts (one social care, one acute care and one mental health Trust) and discussion of the identified themes. A further six transcripts (representing the range of service settings) were then coded by CS, MD and NB to refine the template. This final template was then used to code the remaining data.

DCM data were analysed using standard DCM guidelines, including preparing summaries of data at an individual resident and group level. Copies of training materials were reviewed and their content mapped against the learning outcomes contained within the Dementia Core Skills Education and Training Framework [ 25 ]. The audit tool [ 26 ] of good practice in dementia training was used to audit each training programme. The responses to patient and carer satisfaction cards were summarised using descriptive statistics and manual thematic analysis.

Once analysis of each data source for a site was complete, a within case analysis [ 19 ] was conducted. This involved summarising each data source, triangulating across sources, and synthesising into a written ‘story of the case’ [ 34 ]. This was followed by cross-case analysis [ 19 ] across the three sites using convergence coding [ 35 ]. Convergence coding involved creation of a data grid highlighting themes and findings, supporting comparison of areas of agreement, partial agreement and dissonance [ 36 ].

The organisations recruited varied in terms of size and number of units participating in the study (Table  2 ), although all were within provider organisations who owned a small number of care homes (≤7) and were located across England and Scotland. All had an internal training lead/trainer who was responsible for delivery of dementia training across all homes within the organisation. The key themes and issues identified in the analysis are presented by site in Table  3 .

Characteristics of case study sites

Summary of key findings and themes across case study sites

Design and delivery

All sites offered a range of training provision (Table ​ (Table2) 2 ) that was mostly bespoke and developed by the training lead. The majority of training was delivered face-to-face in small groups, with some sites including other delivery methods. In one site, a standardised workbook that covered required dementia training content for Scotland was used. However, the training lead had tailored the delivery method by including additional monthly face-to-face discussion groups where staff could reflect on application of learning, recognising the importance of co-learning.

We thought in order to change practice that it has to be facilitated within the team … all the reflective exercises are about people that they actually care for. Thought it was more real … and group facilitation rather than just giving people the folder with the information. (Training Lead SC040)

In another site, a self-directed workbook was also used but the approach was under review due to both the local Council and the training lead identifying this method was not appropriate, as the training was not being completed.

They are given a booklet but basically left with it . (Dementia Lead SC042)

The training facilitator in one site highlighted how she had removed as much written material as possible from the training, upon recognising that staff did not find it helpful to their learning.

Giving lots of hand-outs was not effective because it was just people getting stressed out because they couldn’t find a hand-out or they had too much information to read to process and they weren’t really focussing on the training (SC076 Training Facilitator)

Dementia training was offered to all staff working in the care homes irrespective of role.

You’re not going to have laundry staff that are experts in dementia because they don’t have to be. It’s not their role. But you still want your workforce to be fit for purpose and have an awareness with the client group they’re working with. (Training Lead SC040)

During training observations it was noted that the training leads in each site delivered content flexibly to meet the needs of the group, for example by tailoring examples they provided to the group participants and their role and asking for and responding to learner’s own practice examples to inform discussion. The trainers recognised the importance of tailoring provision to the needs of the organisation and range of staff attending.

Reaction to training

Staff responses to the training were generally positive across the three sites. During focus groups, interviews and immediately following training staff made comments such as interesting (SC040 Staff Member 026), informative (SC040 Staff Member 025) and t he best training I’ve ever been on (SC042 training observation field note). Key themes related to training reaction included the value of small group, face-to-face learning, a dislike for e-learning and the benefits of using case scenarios.

Overwhelmingly staff identified the importance of face-to-face learning and the ongoing support provided by the sites for staff during and after training.

I find personally I understand things better when it’s in a training setting, er, there is a group of you, when you know, er, giving ideas and all talking together about it rather than a question on a page. (SC042 Staff Member 034)
… having people go home and work on it on their own and then come back into the course just to talk about it. (Staff Member SC040 013)

In the other site the delivery approach had not yet been revised and staff commented on how unhelpful they found the method.

because it is how you respond to a person verbally. You can’t do that out of a book can you? (SC042 Focus Group P1)

On-line modules formed a component of induction in one site and had previously been part of training in another, however this was not viewed favourably by those in leadership positions, who saw it as little more than a tick-box exercise.

You know a monkey could sit and do it. (Unit Manager SC040 020). … ‘cause they can copy and they can say just tick tick, tick, that’s fine (SC076 Training Lead).

Staff also noted they found interactive learning activities and the use of video or other forms of case study scenarios particularly helpful in helping them to apply learning to practice.

Mostly the scenarios … . This scenario thing and it was exactly like, exact same as one of the residents in here. (SC040 Staff Member 013).
Videos have worked well … If you could find a decent video that supports a point that you’re trying to make and you can see it in practice it’s really good because issues that we have … role play is wonderful but it doesn’t really…it’s not an accurate simulation of someone with dementia. (SC076 Training Facilitator)

There was evidence from the interviews, focus groups (including vignette-based discussions) and observations of care practice that a range of learning had taken place. Key themes were gaining empathy and knowledge about the lived experience of dementia, and understanding individual needs. These themes were a consistent outcome of training across all three sites.

I feel I’ve gained a lot of understanding about dementia and how it progresses and you’ve sort of put yourself in their shoes and you think well that could be me some day, so I would hope that whoever’s looking after me would give me the care that I would expect and understand. (SC040 Focus Group P4)
… you just feel as though you need to help them more, whereas before I’d have dismissed them. I won’t say I was awful but I would have, I would have thought: Oh silly old fool or … . Whereas now I think I’ve got much more empathy with them and feeling more towards them. (SC042 Focus Group P1)

The importance of understanding and providing care that was person-centred and met individual residents’ needs was identified as a learning point by staff at two sites.

Staff can step back and say ‘that’s why that person does that. Now we know what to do’. (Staff Member SC040 014)
So you’ve got to individualise when you’re caring. (SC076 Focus Group 3 P2)

One staff member reported finding some content during the session overwhelming and that s/he only took in the information upon,

… reflect[ing] on it when you’re on the floor. (SC040 Staff member 026).

The learning that took place ‘on the job’ was also identified as important by a staff member at another site.

I think for training is good in some ways but to be here is more life, true, real-life, the way it is. For me it can be both but to be here you learn more. (SC042 Focus Group, P2).
[It gives me a chance to] go home and it’s good just to sit, relaxing, writing your scenarios. You know what you’ve to do and what you’ve to say and you get time to think about it. (Staff Member SC040 026)

In another site opportunity to continue reflecting in a supported way outside of formal training was also offered through ‘drop-in’ sessions or provision of additional support materials.

They’ve got you in the back of their minds on you, on their radar to help you with other stuff as well as the Booklet. (SC042 Staff Member 033).

While most staff commented positively about the value of training, some of the more experienced staff in two of the sites indicated that for them there had been little new information covered in training they had attended.

With the Induction Training, there was nothing, nothing added to what I already knew. (SC042 Staff Member 034).

Whilst for other less experienced staff coverage of dementia in the initial induction was not in-depth enough to help them feel confident when commencing work in the home, or training content did not provide enough support to help them in the range of often challenging situations they might find themselves.

… how to get out of situations if somebody has got hold of my hair, how do I get out of that? (SC042 Staff Member 033).

Behaviour change

Themes related to behaviour change included adopting a more empathic and understanding approach, improved communication, provision of meaningful activity, a shift from task to person-focussed care.

Staff in two of the care homes (SC040, SC042) identified how training had helped them to deliver care that was more empathic and was understanding of resident behaviours and what they communicated about individual needs.

SC042 Staff Member P2: We’ve got one lady who goes back to when she was in the War and she was deported and she gets terribly upset and she thinks we’re keeping her in. So we just take her outside on the decking for a little bit, then she is okay. She’s not a prisoner of war anymore. ‘Cause she thinks we’re keeping her a prisoner. But I wouldn’t have known to treat her like that unless I’d known that that’s how dementia can affect you.
I: What might you have done before?
P2: Well, probably said, ‘Look you’re okay, sit down, have a cup of tea’ and basically get on with it, which I probably would have.

As a result of improved staff understanding one manager noted there was a demonstrable reduction in drugs used to manage behaviour in people with dementia, due to staff being able to support needs through psychosocial approaches.

There has been a real marked reduction in the number of drugs and that I can prove. That’s documented and it’s easy to do. (Unit Manager Sc040 020)

In two sites (SC040, SC076) improved staff communication was a behavioural outcome of training. Staff gave examples of approaches the training had taught them, such as wording questions so residents can give a yes/no answer. Keeping language simple and using picture prompts. There was also increased confidence in staff to communicate with residents.

I’m having a joke with them you know, talk about their families and they like talking about- you know talking about their families.. (Staff Member SC040 026).
Talk softer, come down to their level. It’s easier just to say ‘here’s your dinner’ you know and put it in front of them. I don’t do that anymore (SC076 Focus Group 1 P1)

The DCM data showed that in four of the five units observed there were more personal enhancers than detractors observed on average, per participant than detractors (see Fig.  1 ) and overall detraction levels were low. In one unit (B) at site SC040, however, more detractors were observed than enhancers during the mapping period. This indicates that in that unit on the days observations took place not all staff were communicating in person-centred ways.

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Average number of personal detractors and enhancers observed per participant per hour by site and unit

All three sites indicated that implementing new activities in the home had resulted from staff attending training. In one home (SC040) this included one-to-one engagement, hand massages and cookery classes. They had also arranged visits from external professionals who gave Indian Head Massages, ran dance classes or delivered group music sessions. The latter two were particularly highlighted as being enjoyed by the residents.

You would not believe how good it is [the music session], it’s just amazing, such a good feeling. (Unit Manager SC040 020)
They just get on with it, some of them make themselves a drink and stuff. And I think just not saying: ‘Oh you can’t do that’ is wrong. It’s about observing them doing it, making sure they’re safe. I think that’s a good thing we’ve learnt from training, let them be independent. (SC042 Staff Member 802).

In site SC076 staff used a new SMART TV to look for old films, singers or YouTube clips that residents might enjoy. In site SC040 the maintenance worker had started promoting vegetable-growing amongst the residents after attending training. He understood what the residents needed in order to support them to take part in the project. The residents were able to sow the seeds, care for the potatoes, harvest them and then peel them ready to be eaten.

Making a shift from a task focussed to person-centred care was another behaviour change reported. In site SC040 staff commented that they felt they had ‘permission’ to focus on person-centred care such as activities and spending time with residents, rather than feeling they should be completing tasks. This change in behaviour was noted by the training lead.

[They are no longer focussed on] they have to do this for this time and this for this time and the individual gets lost so I think we’re breaking that down. (Training Lead SC040)
I think people exhibit more patience, more individualised care, more person-centred care. I think that goes for relatives as well. We support relatives in an individualised person-centred way, because some of the relatives need that care (Home Manager SC076)

Staff in one care home noted how training was one part of the bigger picture that had supported a shift in culture.

It validated that for us we were on the right track. Obviously things always need to be tweaked, I know that, but I think it was giving a bit of confidence that we’re on the right track. (SC040 Focus Group P3).

Outcomes and impact

Themes related to outcomes and impact included improved resident well-being and decreased distress; disparities and variability of experience; and high resident and relative satisfaction.

Staff across all three sites consistently stated they felt that, as a result of the changes staff had made to practice, residents were experiencing greater well-being and were less frequently distressed.

I do think the training has impacted on their wellbeing in a positive way [. . . ] The carers take a more, a better interest in, you know, what the person like(s) and needs are and how they can make it a better day for them. (SC040 Staff Member 014)
It made them less agitated, they had something to concentrate on, something to do which improved their mood massively. When you work out what activity is right for the right person you then get a better mood all day. (Home Manager SC042)

Our observations of care showed that while resident well-being was generally moderately good and levels of ill-being were low, this did differ between units within the same organisation and across different residents living in the same unit. Figure  2 presents the average Mood and Engagement Value per resident over the period they were observed, known in DCM as their Individual Well and Ill-being Score.

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Individual Well and Ill-being Scores by setting

We found similar results when looking at engagement in activities (see Fig.  3 ). In some units, residents spent more of the observation period in disengaged and distressed behaviours (e.g. passive observation, disengagement, sleep, distress and repetitive behaviours) and less time engaged in active behaviours (e.g. interacting with others, singing, reminiscing, physical exercise, sensory stimulation, work-like activity etc).

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Percentage of time spend in different behaviours during DCM observations

The residents’ and relatives’ satisfaction cards showed high overall satisfaction with care received and respondents felt staff understood their/the residents’ feelings and needs and were knowledgeable about dementia. The qualitative comments included positive aspects and some suggestions for ways care could be improved.

We’re only allowed one shower a week. They have a nice way with them. (Respondent 3 SC040)
My mum used to live in another home but since she came here she is much happier. The dementia care staff know their stuff and nothing is too much trouble. (Respondent 1 SC042)
My Auntie is very well cared for and all her needs are met. All the carers are very patient with her. There is always someone who can answer any questions I may have (Respondent 1 SC076)

In one site, a resident chose to take part in an interview. They said that they felt they were given choices at mealtimes through being given a menu with two different meal options to choose between and believed that staff members respected these choices.

Training barriers

Despite the sites being chosen for the positive aspects of their training, all still experienced a range of barriers to delivery and implementation. Common barriers across the sites included staff time, staffing levels and turnover, lack of dedicated training facilities and difficulties in gaining feedback from staff.

Staff time, staffing levels and turnover

In all three sites a lack of time, staffing levels and turnover were a challenge to training delivery and implementation. This included difficulties being able to free up staff to attend training due to difficulties covering shifts, the need to constantly train new staff in the more basic levels of training due to turnover and a lack of time for staff to implement learning in practice.

Eight people is an awful lot of people off the floor, you can’t, it is just impossible to do (SC040 Manager 019)
Turnover at the moment is really quite difficult to manage (SC042 Dementia Lead)

Two sites had previously required staff to undertake learning in their own time either via face-to-face or self-directed means. This had not been successful in terms of staff reaction to training or completion rates. As one manager stated:

You can’t just expect them to pitch up and not be paid (SC040 Manager 020)
P1 It’s not completed by any means. It was meant to be completed ages ago, P2 I’ve lost mine. (SC042 Focus Group)

Lack of dedicated training facilities

In two of the sites there were no dedicated training facilities available, meaning training was delivered in a lounge or other room in the care home that was often cramped and unsuitable.

Venues are normally an issue because you normally get put into a lounge. A lounge doesn’t have a lot of space really. Sometimes the rooms are quite small and that limits the number of people you can have in the room and limits, you might wanna do – can’t really facilitate or there may not be sufficient wi-fi… (Training Facilitator SC076)

Difficulties in getting feedback on training

In two sites the training lead/facilitators mentioned difficulties they experienced in getting honest and practical feedback from staff about how useful the training had been as well as impact on care practice.

It’s difficult to get out because they all say “We enjoy the training”. “Great, ok, what did you like?” You can ask it verbally or you……if you ask it verbally you get a better answer. If you ask them to write it down it doesn’t really come through…all of it. “Which bit was particularly useful for you?” “Yeah, well everything.” Ok. There’s not really real constructive to feed back in. (SC076 Training Facilitator)
I can’t say I’ve had fabulous feedback in terms of change (SC040 Training Facilitator)

Facilitating factors

Common facilitators of training delivery and implementation across the good practice sites included commitment of the organisation and management, skilled training facilitation and strong peer and team support.

Commitment of the organisation and management

The importance of organisational and managerial commitment to dementia training was a strong feature of all of the sites. This included an organisational culture and ethos that valued training, home or unit managers who supported training attendance and implementation in practice, and strong leadership for dementia training via a dementia and/or training lead.

As a company [name] are really, really keen and up there to make sure the staff are fit for purpose, well trained and can deliver good care and they feel quite passionate about it I think (SC040 Training Facilitator)
So, it has to come from the top. You can have the best carers in the world, but it makes no difference if the people at the top don’t want to actually give people time to learn, (SC042 Dementia Lead)

Skilled training facilitation

Skilled and flexible training facilitation was mentioned as a facilitator in all sites. The trainers made learning memorable and managers commented that staff often talked about dementia training when back on the units afterwards.

[The Training Lead] is quite flexible, she will come into the homes if the homes are struggling or short staff and she’s got people that need to do training. She’ll come round here rather than go out there. (SC042 Manager)

Strong peer and team support

Having a staff team who were motivated to learn, supportive of one another and who felt empowered to make suggestions for practice change was a facilitator at all three sites.

[Name of colleague] is really good at raising stuff. Because she’s an admin worker, her perspective is different. And she will quite often say: ‘But, why can’t you? Why?’ and sometimes in an organisation, that is what you need- people that will challenge, because otherwise you end up with, you all do it that way, because you all do it, and that way can lead to stagnation, bad practice. (SC076 Unit Manager)

The case studies identified a range of elements of good practice in relation to training design, delivery and implementation that are applicable not only to dementia training, but to broader training delivery within care home settings. As was reported by Beeber et al. [ 5 ] the design and delivery methods utilised were important and in the case studies particularly impacted on staff reactions to training and subsequent uptake. Findings across the three sites strongly support the use of face-to-face delivery, interactive and engaging teaching methods and the tailoring of training to the setting and staff roles of those attending. The preference for and benefits of face-to-face, interactive training in care home settings are reported in the international research literature see for example [ 37 , 38 ]. This were also a common feature of training delivery preferences of staff in other settings (e.g. acute hospitals [ 39 ]) within the broader What Works study. However, implementation of such methods is pragmatically challenging in light of the staffing and resource barriers that were identified at all sites, as well as the broad range of subjects and learning outcomes that staff training must address in order to meet national standards [ 40 , 41 ] (see for example [ 42 , 43 ]). Staffing issues and having the resources to support staff to attend and implement training have been reported as challenging within social care workforce development and intervention research [ 44 – 47 ]. This suggests that care provider organisations and researchers should consider resource and staffing issues and how they will be addressed or accommodated, before embarking on new programmes of staff training in care home settings.

In the case study sites, an organisational ethos and culture of commitment to dementia training, which was evidenced throughout the management team, helped to overcome some of the resource issues. This, coupled with the presence of dedicated training staff to develop, facilitate and champion training, provided a positive context in which training could be carried out and implemented despite the challenges. The importance of both top-down and bottom-up approaches to changing care practice through educational programmes in care home settings has been reported in other research. This includes active executive and management involvement and the presence of individual(s) to ‘champion’ implementation [ 13 , 38 , 47 ]. Where managers are seen as ‘far removed’ this can be a barrier to training implementation [ 46 ]. The organisational culture was also reflected in the peer support, and staff engagement in training attendance and in subsequent implementation. Resistance to change among staff teams [ 48 ] and the impact that individuals who are ‘rigid’, ‘closed-minded’ or ‘indifferent’ can have on colleagues’ motivation is another potential barrier [ 46 ]. This indicates that in the design of training programmes, trainers and organisations should not only consider the content and delivery but also how to prepare and engage the organisation and individual staff members. Without a team and organisational culture that is largely supportive of training and its implementation, the many barriers that exist are likely to prevent optimal impact [ 49 , 50 ].

It was disappointing that we were not able to recruit any domiciliary/home care organisations into the study. It is likely that some of the issues, barriers and facilitators may be similar to those experienced in care home settings due to the similarities there are in demographics and prior educational experience of both workforces. However, we would also anticipate domiciliary care providers and staff to experience a range of additional challenges associated with lone working, use of zero hours contracts [ 51 ] and a geographically spread workforce.

Limitations

There are a number of limitations in this study. While the case studies were in-depth, we were only able to include the three top-performing audit respondents in ‘best practice’ case studies. Therefore, the sample is not representative of the typical or average care home. Given staff had already accessed a range of dementia training, it was not possible to understand the direct impact on outcomes of individual training packages included in the case study. The respondents to the satisfaction survey for residents with dementia and their family members may reflect participation bias. Residents and family members who are more satisfied may be more likely to respond than others. Relatives who are dissatisfied may be concerned about raising issues if given their loved one is still being cared for in the care home. It is difficult to draw any firm conclusions about the impact of training on staff practice and resident outcomes from the observational data.

Conclusions and recommendations

Despite care homes being one of the most researched settings in terms of dementia training and its impact, relatively little is still known about how the emergent design and delivery features of effective training (e.g. face-to-face, tailored, flexible, interactive) can be implemented practically. Likewise, while an understanding of the ideal setting conditions for training and other psychosocial interventions is evolving, how these can be facilitated and sustained is still poorly understood or implemented. More research is still needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

This study has added to our understanding of effective dementia education and training for care home staff. It suggests that training that is most likely to lead to positive outcomes across staff reactions, learning, behaviour change and outcomes for people with dementia has the following qualities. It:

  • Is delivered face-to-face to a small group using interactive methods such as discussion, case studies and practical exercises and activities;
  • Is tailored to the setting and role of staff attending and was inclusive of all staff working in direct care and non-care roles;
  • Provides ongoing support outside of the training room for staff to reflect on learning and implement training;
  • Includes methods that support staff to engage with the lived experience of people with dementia;
  • Is delivered by an experienced training facilitator who is able to engage and work flexibly with staff;
  • Is one component of achieving an organisational commitment to and culture of person-centred care;
  • Is supported by the home owners and management team in terms of resource and development of an organisational culture that values learning.

Additional file

Inclusion criteria and steps for selection of the case study sites. (DOCX 62 kb)

Acknowledgements

We would like to thank all of the participating sites and individuals who gave their time freely to take part in this research. We would like to thank other members of the research team Dr. Sarah Smith, Dr. Sahdia Parveen, Dr. Andrea Capstick and Dr. David Meads, who contributed to study design and implementation. We would like to thank the members of the lay advisory group who provided insight and advice on study design, materials, analysis and dissemination. We would also like to thank Dr. Andrew Hart for his involvement in data analysis.

Abbreviations

Authors’ contributions.

CAS was Chief Investigator of the study and contributed to study design, data analysis and interpretation and drafting this manuscript. CS contributed to data acquisition, data analysis and interpretation and revising the manuscript. MD contributed to data acquisition, data analysis and interpretation and revising the manuscript. NB contributed to data acquisition, data analysis and interpretation and revising the manuscript. AD contributed to study design, data interpretation and revising the manuscript. SB contributed to data analysis, interpretation and revising the manuscript. JO was Lead for the Case study work package and contributed to study design, data analysis and interpretation and revising the manuscript. All authors have read and approved the final manuscript.

This study was funded by the National Institute for Health Research Policy Research Programme (NIHR PRP) under Grant PR-R10–0514-12006. The views expressed in the publication are those of the author(s) and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care, ‘arms’ length bodies or other government departments.

Availability of data and materials

Ethics approval and consent to participate.

Ethical approval for the study was given by the Yorkshire and the Humber – Bradford Leeds NHS Research Ethics Committee [REC Ref 15/YH/0488]. All participants gave informed, written consent to participate.

Consent for publication

Not applicable.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

Claire A. Surr, Phone: 0113 812 4316, Email: [email protected] .

Cara Sass, Email: [email protected] .

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Jan Oyebode, Email: [email protected] .

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    Overall, a growing body of evidence supports the nine potentially modifiable risk factors for dementia modelled by the 2017 Lancet Commission on dementia prevention, intervention, and care: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact.

  4. Case 41-2020: A 62-Year-Old Man with Memory Loss and Odd Behavior

    21 References 2 Citing Articles Presentation of Case Dr. David L. Perez: A 62-year-old, left-handed man was seen in the memory disorders clinic of this hospital because of memory loss,...

  5. Using care navigation to address caregiver burden in dementia: A

    Qualitative methods (interviews, focus groups, and case study analysis) were used to identify care navigator approaches used to address caregiver burden in dementia as part of a dementia care navigation program. Results

  6. Extremely Early-Onset Frontotemporal Dementia: A Case Report and

    In most cases, the onset of frontotemporal dementia (FTD) occurs between the ages of 45 and 65 years. However, some patients experience an extremely early disease onset. Objective: To investigate the clinical, genetic, and pathological features of extremely early-onset FTD. Methods:

  7. Anticholinergic drugs and risk of dementia: case-control study

    Objectives To estimate the association between the duration and level of exposure to different classes of anticholinergic drugs and subsequent incident dementia. Design Case-control study. Setting General practices in the UK contributing to the Clinical Practice Research Datalink. Participants 40 770 patients aged 65-99 with a diagnosis of dementia between April 2006 and July 2015, and 283 933 ...

  8. A qualitative systematic review of experiences of persons with dementia

    Nellie (>85 years old, female, White, has dementia)Daughter (Annie) Case worker Social worker: Case study: Field notes and interviews with relatives and other professionals: Four key findings: 1. Importance of good person/environment fit2. Personal agency is challenged well before transition to residential care settings3.

  9. Components of case management in caring for patients with dementia: a

    All patients who meet the criteria for dementia and who receive or request case management services from these nurses will be included in the analysis. Study design. To avoid the usual over-expansion of case studies, we will apply the recommendations of Yin et al. . A temporal and spatial framework will be established for the observation ...

  10. Using care navigation to address caregiver burden in dementia: A

    Methods: Qualitative methods (interviews, focus groups, and case study analysis) were used to identify care navigator approaches used to address caregiver burden in dementia as part of a dementia care navigation program.

  11. Exploring the provision and support of care for long-term conditions in

    In a qualitative, case study design, consecutive telephone or video-call interviews were conducted with people with dementia, their family carers and healthcare providers over a four-month period. Participant accounts were triangulated with documentary analysis of primary care medical records and event-based diaries kept by participants with ...

  12. Case Studies in Dementia

    Summary. This chapter talks about an 85-year-old man who was enrolled in a longitudinal study of healthy aging and Alzheimer disease (AD) at the Washington University Alzheimer Disease Research Center (ADRC). He was diagnosed with dementia of the Alzheimer's type (DAT) and died shortly after his 91st birthday.

  13. Dementia prevention, intervention, and care: 2020 report of the

    Overall, a growing body of evidence supports the nine potentially modifiable risk factors for dementia modelled by the 2017 Lancet Commission on dementia prevention, intervention, and care: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact.

  14. Using care navigation to address caregiver burden in dementia:

    den in dementia. Methods: Qualitative methods (interviews, focus groups, and case study analysis) were. used to identify care navigator approaches used to address caregiver burden in demen-. tia as part of a dementia care navigation program. Results: Care navigators targeted caregiver burden by focusing on strategies to reduce.

  15. Dementia case-finding in hospitals: a qualitative study exploring the

    Objectives In 2012-2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived ...

  16. Care considerations for persons with early-onset dementia: A case

    T1 - Care considerations for persons with early-onset dementia. T2 - A case studies analysis. AU - Rose, Karen. AU - Yu, Fang. AU - Palmer, Janice L. AU - Richeson, Nancy E. AU - Burgener, Sandy C. PY - 2010/7. Y1 - 2010/7. N2 - Persons with early-onset dementia are a growing subpopulation of persons with dementia. Persons with early-onset ...

  17. Outcomes and cost analysis of patients with dementia in the intensive

    Published: 19 October 2023 Outcomes and cost analysis of patients with dementia in the intensive care unit: a population-based cohort study C. Dziegielewski, SM. Fernando, C. Milani, R. Mahdavi, R. Talarico, LH. Thompson, P. Tanuseputro & K. Kyeremanteng BMC Health Services Research 23, Article number: 1124 ( 2023 ) Cite this article 534 Accesses

  18. Dementia case study with questions and answers

    Question 1. What are the key features to address in a dementia history? Question 2. What specific features of memory decline do you want know? Question 3. What are the key parts of a biographical history? Question 4. What are the best way to get a current overview of memory? Question 5. How do you measure the impact of memory loss on daily life?

  19. Translating Research Into Practice: Case Study Of A Community-Based

    The devastating impact and escalating costs of dementia affect not only the person who has the illness, but also the family. There is an extensive body of evidence showing that caring for a family member with dementia has substantial negative physical and mental health consequences, in addition to the direct and lost opportunity costs borne by families. 1 Family caregivers are at increased ...

  20. Schizophrenia and risk of dementia: a meta-analysis study

    The meta-analysis of six studies involving 5,063,316 participants and 206,694 cases showed a significant positive relationship between schizophrenia and risk of dementia. These results implied that subjects with schizophrenia may have a higher prevalence of dementia than those without schizophrenia.

  21. Alzheimer's Disease Case Study Analysis: Insights And Lessons

    Alzheimer's Disease Case Study Analysis Insights And Lessons — smart'n - NextGen Learning Support for Nurses Case study Explore valuable insights and lessons from an in-depth Alzheimer's Disease case study analysis. Gain a deeper understanding of this condition's complexities and implications.

  22. Dementia case-finding in hospitals: a qualitative study exploring the

    Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding.

  23. Lack of visual imagery does not lead to less pleasure in reading, finds

    Visual imagery is thought to be involved in various cognitive processes, including language processing. For instance, when we hear the word "red," we create an image of that color in our mind ...

  24. Caring for Dementia Caregivers: The Golden Buckeye Center for Dementia

    Nearly a half-million (493,000) unpaid caregivers provide necessary assistance and in-home care right now to Ohioans living with dementia, providing services valued at more than $13 billion.1 Although dementia caregiving often involves a network of family and friends3, spouses commonly bear much of the caregiving responsibility.

  25. A collective case study of the features of impactful dementia training

    The study team undertook analysis of the full set of data for each case study site individually followed by cross-case analysis. Interview, focus group and training observation data were analysed using the thematic analysis method, template analysis [ 31 , 32 ] using NVivo 11 [ 33 ].