logo

  • Advanced Life Support
  • Endocrinology
  • Gastroenterology
  • Infectious disease
  • Intensive care
  • Palliative Care
  • Respiratory
  • Rheumatology
  • Haematology
  • Endocrine surgery
  • General surgery
  • Neurosurgery
  • Ophthalmology
  • Plastic surgery
  • Vascular surgery
  • Abdo examination
  • Cardio examination
  • Neurolo examination
  • Resp examination
  • Rheum examination
  • Vasc exacmination
  • Other examinations
  • Clinical Cases
  • Communication skills
  • Prescribing

 logo

Dementia case study with questions and answers

Print Friendly, PDF & Email

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.

Call our 24 hours, seven days a week helpline at 800.272.3900

Alzheimer's Association - Logo

  • Professionals

Give during our limited-time 4x Match Challenge. Donate now.

  • Younger/Early-Onset Alzheimer's
  • Is Alzheimer's Genetic?
  • Women and Alzheimer's
  • Creutzfeldt-Jakob Disease
  • Dementia with Lewy Bodies
  • Down Syndrome & Alzheimer's
  • Frontotemporal Dementia
  • Huntington's Disease
  • Mixed Dementia
  • Normal Pressure Hydrocephalus
  • Posterior Cortical Atrophy
  • Parkinson's Disease Dementia
  • Vascular Dementia
  • Korsakoff Syndrome
  • Traumatic Brain Injury (TBI)
  • Know the 10 Signs
  • Difference Between Alzheimer's & Dementia
  • 10 Steps to Approach Memory Concerns in Others
  • Medical Tests for Diagnosing Alzheimer's
  • Why Get Checked?
  • Visiting Your Doctor
  • Life After Diagnosis
  • Stages of Alzheimer's
  • Earlier Diagnosis
  • Part the Cloud
  • Research Momentum

Our Commitment to Research

  • TrialMatch: Find a Clinical Trial

What Are Clinical Trials?

How clinical trials work, when clinical trials end.

  • Why Participate?
  • Talk to Your Doctor

Clinical Trials: Myths vs. Facts

  • Can Alzheimer's Disease Be Prevented?

Brain Donation

  • Navigating Treatment Options
  • Lecanemab Approved for Treatment of Early Alzheimer's Disease
  • Aducanumab Discontinued as Alzheimer's Treatment
  • Donanemab for Treatment of Early Alzheimer's Disease — News Pending FDA Review
  • Medicare Treatment Coverage
  • Questions for Your Doctor
  • Medications for Memory, Cognition and Dementia-Related Behaviors
  • Treatments for Behavior
  • Treatments for Sleep Changes
  • Alternative Treatments
  • Facts and Figures
  • Assessing Symptoms and Seeking Help
  • Now is the Best Time to Talk about Alzheimer's Together
  • Get Educated
  • Just Diagnosed
  • Sharing Your Diagnosis
  • Changes in Relationships
  • If You Live Alone
  • Treatments and Research
  • Legal Planning
  • Financial Planning
  • Building a Care Team
  • End-of-Life Planning
  • Programs and Support
  • Overcoming Stigma
  • Younger-Onset Alzheimer's
  • Taking Care of Yourself
  • Reducing Stress
  • Tips for Daily Life
  • Helping Family and Friends
  • Leaving Your Legacy
  • Live Well Online Resources
  • Make a Difference
  • Daily Care Plan
  • Communication and Alzheimer's
  • Food and Eating
  • Art and Music
  • Incontinence
  • Dressing and Grooming
  • Dental Care
  • Working With the Doctor
  • Medication Safety
  • Accepting the Diagnosis
  • Early-Stage Caregiving
  • Middle-Stage Caregiving
  • Late-Stage Caregiving
  • Aggression and Anger
  • Anxiety and Agitation
  • Hallucinations
  • Memory Loss and Confusion
  • Sleep Issues and Sundowning
  • Suspicions and Delusions
  • In-Home Care
  • Adult Day Centers
  • Long-Term Care
  • Respite Care
  • Hospice Care
  • Choosing Care Providers
  • Finding a Memory Care-Certified Nursing Home or Assisted Living Community
  • Changing Care Providers
  • Working with Care Providers
  • Creating Your Care Team
  • Long-Distance Caregiving
  • Community Resource Finder
  • Be a Healthy Caregiver
  • Caregiver Stress
  • Caregiver Stress Check
  • Caregiver Depression
  • Changes to Your Relationship
  • Grief and Loss as Alzheimer's Progresses
  • Home Safety
  • Dementia and Driving
  • 24/7 Wandering Support
  • Technology 101
  • Preparing for Emergencies
  • Managing Money Online Program
  • Planning for Care Costs
  • Paying for Care
  • Health Care Appeals for People with Alzheimer's and Other Dementias
  • Social Security Disability
  • Medicare Part D Benefits
  • Tax Deductions and Credits
  • Planning Ahead for Legal Matters
  • Legal Documents
  • ALZ Talks Virtual Events
  • ALZNavigator
  • Veterans and Dementia
  • The Knight Family Dementia Care Coordination Initiative
  • Online Tools
  • Asian Americans and Pacific Islanders and Alzheimer's
  • Native Americans and Alzheimer's
  • Black Americans and Alzheimer's
  • Hispanic Americans and Alzheimer's
  • LGBTQ+ Community Resources for Dementia
  • Educational Programs and Dementia Care Resources
  • Brain Facts
  • 50 Activities
  • For Parents and Teachers
  • Resolving Family Conflicts
  • Holiday Gift Guide for Caregivers and People Living with Dementia
  • Trajectory Report
  • Resource Lists
  • Search Databases
  • Publications
  • Favorite Links
  • 10 Healthy Habits for Your Brain
  • Stay Physically Active
  • Adopt a Healthy Diet
  • Stay Mentally and Socially Active
  • Online Community
  • Support Groups
  • Find Your Local Chapter
  • Any Given Moment

New IDEAS Study

  • RFI Amyloid PET Depletion Following Treatment
  • Bruce T. Lamb, Ph.D., Chair
  • Christopher van Dyck, M.D.
  • Cynthia Lemere, Ph.D.
  • David Knopman, M.D.
  • Lee A. Jennings, M.D. MSHS
  • Karen Bell, M.D.
  • Lea Grinberg, M.D., Ph.D.
  • Malú Tansey, Ph.D.
  • Mary Sano, Ph.D.
  • Oscar Lopez, M.D.
  • Suzanne Craft, Ph.D.
  • About Our Grants
  • Andrew Kiselica, Ph.D., ABPP-CN
  • Arjun Masurkar, M.D., Ph.D.
  • Benjamin Combs, Ph.D.
  • Charles DeCarli, M.D.
  • Damian Holsinger, Ph.D.
  • David Soleimani-Meigooni, Ph.D.
  • Donna M. Wilcock, Ph.D.
  • Doris Molina-Henry, Ph.D.
  • Elizabeth Head, M.A, Ph.D.
  • Fan Fan, M.D.
  • Fayron Epps, Ph.D., R.N.
  • Ganesh Babulal, Ph.D., OTD
  • Hui Zheng, Ph.D.
  • Jason D. Flatt, Ph.D., MPH
  • Jennifer Manly, Ph.D.
  • Joanna Jankowsky, Ph.D.
  • Luis Medina, Ph.D.
  • Marcello D’Amelio, Ph.D.
  • Marcia N. Gordon, Ph.D.
  • Margaret Pericak-Vance, Ph.D.
  • María Llorens-Martín, Ph.D.
  • Nancy Hodgson, Ph.D.
  • Shana D. Stites, Psy.D., M.A., M.S.
  • Walter Swardfager, Ph.D.
  • ALZ WW-FNFP Grant
  • Capacity Building in International Dementia Research Program
  • ISTAART IGPCC
  • Alzheimer’s Disease Strategic Fund: Endolysosomal Activity in Alzheimer’s (E2A) Grant Program
  • Imaging Research in Alzheimer’s and Other Neurodegenerative Diseases
  • National Academy of Neuropsychology & Alzheimer’s Association Funding Opportunity
  • Part the Cloud-Gates Partnership Grant Program: Bioenergetics and Inflammation
  • Pilot Awards for Global Brain Health Leaders (Invitation Only)
  • Robert W. Katzman, M.D., Clinical Research Training Scholarship
  • Funded Studies
  • How to Apply
  • Portfolio Summaries
  • Supporting Research in Health Disparities, Policy and Ethics in Alzheimer’s Disease and Dementia Research (HPE-ADRD)
  • Diagnostic Criteria & Guidelines
  • Annual Conference: AAIC
  • Professional Society: ISTAART
  • Alzheimer's & Dementia
  • Alzheimer's & Dementia: DADM
  • Alzheimer's & Dementia: TRCI
  • International Network to Study SARS-CoV-2 Impact on Behavior and Cognition
  • Alzheimer’s Association Business Consortium (AABC)
  • Global Biomarker Standardization Consortium (GBSC)
  • Global Alzheimer’s Association Interactive Network
  • International Alzheimer's Disease Research Portfolio
  • Alzheimer’s Disease Neuroimaging Initiative Private Partner Scientific Board (ADNI-PPSB)
  • Research Roundtable
  • About WW-ADNI
  • North American ADNI
  • European ADNI
  • Australia ADNI
  • Taiwan ADNI
  • Argentina ADNI
  • WW-ADNI Meetings
  • Submit Study
  • RFI Inclusive Language Guide
  • AUC for Amyloid and Tau PET Imaging
  • Make a Donation
  • Walk to End Alzheimer's
  • The Longest Day
  • RivALZ to End ALZ
  • Ride to End ALZ
  • Tribute Pages
  • Gift Options to Meet Your Goals
  • Founders Society
  • Fred Bernhardt
  • Anjanette Kichline
  • Lori A. Jacobson
  • Pam and Bill Russell
  • Gina Adelman
  • Franz and Christa Boetsch
  • Adrienne Edelstein
  • For Professional Advisors
  • Free Planning Guides
  • Contact the Planned Giving Staff
  • Workplace Giving
  • Do Good to End ALZ
  • Donate a Vehicle
  • Donate Stock
  • Donate Cryptocurrency
  • Donate Gold & Sterling Silver
  • Donor-Advised Funds
  • Use of Funds
  • Giving Societies
  • Why We Advocate
  • Ambassador Program
  • Alzheimer’s Impact Movement (AIM)
  • Research Funding
  • Improving Care
  • Support for People Living With Dementia
  • Public Policy Victories
  • Planned Giving
  • Community Educator
  • Community Representative
  • Support Group Facilitator or Mentor
  • Faith Outreach Representative
  • Early Stage Social Engagement Leaders
  • Data Entry Volunteer
  • Tech Support Volunteer
  • Other Local Opportunities
  • Visit the Program Volunteer Community to Learn More
  • Become a Corporate Partner
  • A Family Affair
  • A Message from Elizabeth
  • The Belin Family
  • The Eliashar Family
  • The Fremont Family
  • The Freund Family
  • Jeff and Randi Gillman
  • Harold Matzner
  • The Mendelson Family
  • Patty and Arthur Newman
  • The Ozer Family
  • Salon Series
  • No Shave November
  • Other Philanthropic Activities
  • Still Alice
  • The Judy Fund E-blast Archive
  • The Judy Fund in the News
  • The Judy Fund Newsletter Archives
  • Sigma Kappa Foundation
  • Alpha Delta Kappa
  • Parrot Heads in Paradise
  • Tau Kappa Epsilon (TKE)
  • Sigma Alpha Mu
  • Alois Society Member Levels and Benefits
  • Alois Society Member Resources
  • Zenith Society
  • Founder's Society
  • Joel Berman
  • JR and Emily Paterakis
  • Legal Industry Leadership Council
  • Accounting Industry Leadership Council

Find Local Resources

Let us connect you to professionals and support options near you. Please select an option below:

Use Current Location Use Map Selector

Search Alzheimer’s Association

Help advance research.

Don’t just hope for a cure. Help us find one. Volunteer for a clinical trial.

Start TrialMatch

Clinical Trials

Without clinical trials, there can be no better treatments, no prevention and no cure for alzheimer's disease.  .

Recruiting and retaining diverse trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer's treatments. Individuals with dementia, caregivers and healthy volunteers are all needed to participate in clinical studies focused on Alzheimer's and other dementias.

About Clinical Trials

Without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer's disease.

You Can Make a Difference

Every clinical trial contributes valuable knowledge to the field of Alzheimer's research. By participating in clinical research, you can help accelerate progress and build toward a world without Alzheimer's and other dementias.

Why Participate in a Clinical Trial?

Clinical trials provide many participants access to cutting-edge treatments and expert medical care. And someday, they will lead us to the end of Alzheimer’s.

TrialMatch: Find Clinical Trials for Alzheimer's and Other Dementia

Help advance Alzheimer's research using our free TrialMatch matching tool.

The New IDEAS Study is designed to evaluate the use of PET scans in diverse populations living with dementia and Alzheimer's.

Both healthy brains and brains affected by diseases such as Alzheimer’s are needed to help advance dementia research. Learn about the donation process.

Learn how the Alzheimer's Association, the world's largest nonprofit funder of Alzheimer's research, is committed to accelerating the global effort to eliminate Alzheimer's disease and other dementias.

Support Alzheimer's Research

The Alzheimer’s Association leads the way toward ending Alzheimer’s and all other dementia. Donate today so we can continue advancing vital research toward methods of treatment, prevention and, ultimately, a cure.

At Any Given Moment, Research is Happening

At every minute of every day, researchers are working to end Alzheimer's — fueled by the Association’s worldwide reach, diverse research and high-impact funding.

Learn How You Can Help

Keep Up With Alzheimer’s News and Events

The first survivor of alzheimer's is out there, but we won't get there without you., learn how alzheimer’s disease affects the brain..

Take the Brain Tour

Don't just hope for a cure. Help us find one. Volunteer for a clinical trial.

  • Introduction
  • Conclusions
  • Article Information

eFigure 1. Selection of cases and controls for the analysis based on exposures in the 1 to 11 years before index date.

eFigure 2. Proportions of cases and controls prescribed different types of anticholinergic drug in the 1 to 11 years before diagnosis.

eTable 1. Anticholinergic drugs included as exposures.

eTable 2. Recording of dementia type and recorded source of diagnosis in cases.

eTable 3. Numbers of cases and controls prescribed individual anticholinergic drugs in the 1 to 11 years before the index date.

eTable 4. Numbers of cases and controls prescribed different types of anticholinergic drugs in the 3 to 13 years before the index date.

eTable 5. Numbers of cases and controls prescribed different types of anticholinergic drugs in the 5 to 20 years before the index date.

eTable 6. Adjusted odds ratios for cumulative use of anticholinergic drug types in the 1 to 11, 3 to 13 and 5 to 20 years before the index date.

eTable 7. Numbers of cases and controls prescribed anticholinergic drug types in the 1 to 11, 3 to 13 and 5 to 20 years before the index date.

eTable 8. Adjusted odds ratios for cumulative use of anticholinergic drugs in the 1 to 11 years before index date: separate analyses in cases aged less than 80 at diagnosis of dementia and cases aged 80 and over at diagnosis, with their respective matched controls.

eTable 9. Adjusted odds ratios for cumulative use of anticholinergic drugs in the 1 to 11 years before the index date: separate analyses in men and women, with their respective matched controls.

eTable 10. Adjusted odds ratios for cumulative use of anticholinergic drugs in the 1 to 11 years before index date: separate analyses in cases with Alzheimer’s, cases with vascular dementia, and cases with other types or unspecified type of dementia with their respective matched controls.

eTable 11. Adjusted odds ratios for total cumulative use in DDDs of anticholinergic drugs in 1 to 11, 3 to 13 and 5 to 20 years before the index date.

eTable 12. Adjusted odds ratios for cumulative use of anticholinergic drugs in 1 to11 years before index date: multiple imputation results.

eTable 13. Adjusted odds ratios for cumulative use of anticholinergic drugs in the 1 to 11 years before index date: restricted to the anticholinergic drugs included in Gray study.

  • JAMA Network Articles of the Year 2019 JAMA Medical News & Perspectives December 3, 2019 This Medical News article discusses the top-viewed Original Investigations and Special Communications published across the JAMA Network over 12 months. Jennifer Abbasi
  • Association of Anticholinergic Drug Exposure With Increased Occurrence of Dementia JAMA Internal Medicine Comment & Response December 1, 2019 Lawrence Marc Paul, PhD
  • Association of Anticholinergic Drug Exposure With Increased Occurrence of Dementia JAMA Internal Medicine Comment & Response December 1, 2019 Ronald H. Farkas, MD, PhD; Lawrence G. Miller, MD
  • Preventing Alzheimer Disease by Deprescribing Anticholinergic Medications JAMA Internal Medicine Invited Commentary August 1, 2019 Noll L. Campbell, PharmD, MS; Richard Holden, PhD; Malaz A. Boustani, MD, MPH

See More About

Select your interests.

Customize your JAMA Network experience by selecting one or more topics from the list below.

  • Academic Medicine
  • Acid Base, Electrolytes, Fluids
  • Allergy and Clinical Immunology
  • American Indian or Alaska Natives
  • Anesthesiology
  • Anticoagulation
  • Art and Images in Psychiatry
  • Artificial Intelligence
  • Assisted Reproduction
  • Bleeding and Transfusion
  • Caring for the Critically Ill Patient
  • Challenges in Clinical Electrocardiography
  • Climate and Health
  • Climate Change
  • Clinical Challenge
  • Clinical Decision Support
  • Clinical Implications of Basic Neuroscience
  • Clinical Pharmacy and Pharmacology
  • Complementary and Alternative Medicine
  • Consensus Statements
  • Coronavirus (COVID-19)
  • Critical Care Medicine
  • Cultural Competency
  • Dental Medicine
  • Dermatology
  • Diabetes and Endocrinology
  • Diagnostic Test Interpretation
  • Drug Development
  • Electronic Health Records
  • Emergency Medicine
  • End of Life, Hospice, Palliative Care
  • Environmental Health
  • Equity, Diversity, and Inclusion
  • Facial Plastic Surgery
  • Gastroenterology and Hepatology
  • Genetics and Genomics
  • Genomics and Precision Health
  • Global Health
  • Guide to Statistics and Methods
  • Hair Disorders
  • Health Care Delivery Models
  • Health Care Economics, Insurance, Payment
  • Health Care Quality
  • Health Care Reform
  • Health Care Safety
  • Health Care Workforce
  • Health Disparities
  • Health Inequities
  • Health Policy
  • Health Systems Science
  • History of Medicine
  • Hypertension
  • Images in Neurology
  • Implementation Science
  • Infectious Diseases
  • Innovations in Health Care Delivery
  • JAMA Infographic
  • Law and Medicine
  • Leading Change
  • Less is More
  • LGBTQIA Medicine
  • Lifestyle Behaviors
  • Medical Coding
  • Medical Devices and Equipment
  • Medical Education
  • Medical Education and Training
  • Medical Journals and Publishing
  • Mobile Health and Telemedicine
  • Narrative Medicine
  • Neuroscience and Psychiatry
  • Notable Notes
  • Nutrition, Obesity, Exercise
  • Obstetrics and Gynecology
  • Occupational Health
  • Ophthalmology
  • Orthopedics
  • Otolaryngology
  • Pain Medicine
  • Palliative Care
  • Pathology and Laboratory Medicine
  • Patient Care
  • Patient Information
  • Performance Improvement
  • Performance Measures
  • Perioperative Care and Consultation
  • Pharmacoeconomics
  • Pharmacoepidemiology
  • Pharmacogenetics
  • Pharmacy and Clinical Pharmacology
  • Physical Medicine and Rehabilitation
  • Physical Therapy
  • Physician Leadership
  • Population Health
  • Primary Care
  • Professional Well-being
  • Professionalism
  • Psychiatry and Behavioral Health
  • Public Health
  • Pulmonary Medicine
  • Regulatory Agencies
  • Reproductive Health
  • Research, Methods, Statistics
  • Resuscitation
  • Rheumatology
  • Risk Management
  • Scientific Discovery and the Future of Medicine
  • Shared Decision Making and Communication
  • Sleep Medicine
  • Sports Medicine
  • Stem Cell Transplantation
  • Substance Use and Addiction Medicine
  • Surgical Innovation
  • Surgical Pearls
  • Teachable Moment
  • Technology and Finance
  • The Art of JAMA
  • The Arts and Medicine
  • The Rational Clinical Examination
  • Tobacco and e-Cigarettes
  • Translational Medicine
  • Trauma and Injury
  • Treatment Adherence
  • Ultrasonography
  • Users' Guide to the Medical Literature
  • Vaccination
  • Venous Thromboembolism
  • Veterans Health
  • Women's Health
  • Workflow and Process
  • Wound Care, Infection, Healing

Others Also Liked

  • Download PDF
  • X Facebook More LinkedIn

Coupland CAC , Hill T , Dening T , Morriss R , Moore M , Hippisley-Cox J. Anticholinergic Drug Exposure and the Risk of Dementia : A Nested Case-Control Study . JAMA Intern Med. 2019;179(8):1084–1093. doi:10.1001/jamainternmed.2019.0677

Manage citations:

© 2024

  • Permissions

Anticholinergic Drug Exposure and the Risk of Dementia : A Nested Case-Control Study

  • 1 Division of Primary Care, University of Nottingham, Nottingham, England
  • 2 Division of Psychiatry and Applied Psychology, Institute of Mental Health, Nottingham, England
  • 3 University of Southampton Medical School, Primary Care and Population Sciences, Aldermoor Health Centre, Southampton, England
  • 4 Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, England
  • Invited Commentary Preventing Alzheimer Disease by Deprescribing Anticholinergic Medications Noll L. Campbell, PharmD, MS; Richard Holden, PhD; Malaz A. Boustani, MD, MPH JAMA Internal Medicine
  • Medical News & Perspectives JAMA Network Articles of the Year 2019 Jennifer Abbasi JAMA
  • Comment & Response Association of Anticholinergic Drug Exposure With Increased Occurrence of Dementia Lawrence Marc Paul, PhD JAMA Internal Medicine
  • Comment & Response Association of Anticholinergic Drug Exposure With Increased Occurrence of Dementia Ronald H. Farkas, MD, PhD; Lawrence G. Miller, MD JAMA Internal Medicine

Question   Is the risk of dementia among persons 55 years or older associated with the use of different types of anticholinergic medication?

Findings   In this nested case-control study of 58 769 patients with a diagnosis of dementia and 225 574 matched controls, there were statistically significant associations of dementia risk with exposure to anticholinergic antidepressants, antiparkinson drugs, antipsychotic drugs, bladder antimuscarinics, and antiepileptic drugs after adjusting for confounding variables.

Meaning   The associations observed for specific types of anticholinergic medication suggest that these drugs should be prescribed with caution in middle-aged and older adults.

Importance   Anticholinergic medicines have short-term cognitive adverse effects, but it is uncertain whether long-term use of these drugs is associated with an increased risk of dementia.

Objective   To assess associations between anticholinergic drug treatments and risk of dementia in persons 55 years or older.

Design, Setting, and Participants   This nested case-control study took place in general practices in England that contributed to the QResearch primary care database. The study evaluated whether exposure to anticholinergic drugs was associated with dementia risk in 58 769 patients with a diagnosis of dementia and 225 574 controls 55 years or older matched by age, sex, general practice, and calendar time. Information on prescriptions for 56 drugs with strong anticholinergic properties was used to calculate measures of cumulative anticholinergic drug exposure. Data were analyzed from May 2016 to June 2018.

Exposures   The primary exposure was the total standardized daily doses (TSDDs) of anticholinergic drugs prescribed in the 1 to 11 years prior to the date of diagnosis of dementia or equivalent date in matched controls (index date).

Main Outcomes and Measures   Odds ratios (ORs) for dementia associated with cumulative exposure to anticholinergic drugs, adjusted for confounding variables.

Results   Of the entire study population (284 343 case patients and matched controls), 179 365 (63.1%) were women, and the mean (SD) age of the entire population was 82.2 (6.8) years. The adjusted OR for dementia increased from 1.06 (95% CI, 1.03-1.09) in the lowest overall anticholinergic exposure category (total exposure of 1-90 TSDDs) to 1.49 (95% CI, 1.44-1.54) in the highest category (>1095 TSDDs), compared with no anticholinergic drug prescriptions in the 1 to 11 years before the index date. There were significant increases in dementia risk for the anticholinergic antidepressants (adjusted OR [AOR], 1.29; 95% CI, 1.24-1.34), antiparkinson drugs (AOR, 1.52; 95% CI, 1.16-2.00), antipsychotics (AOR, 1.70; 95% CI, 1.53-1.90), bladder antimuscarinic drugs (AOR, 1.65; 95% CI, 1.56-1.75), and antiepileptic drugs (AOR, 1.39; 95% CI, 1.22-1.57) all for more than 1095 TSDDs. Results were similar when exposures were restricted to exposure windows of 3 to 13 years (AOR, 1.46; 95% CI, 1.41-1.52) and 5 to 20 years (AOR, 1.44; 95% CI, 1.32-1.57) before the index date for more than 1095 TSDDs. Associations were stronger in cases diagnosed before the age of 80 years. The population-attributable fraction associated with total anticholinergic drug exposure during the 1 to 11 years before diagnosis was 10.3%.

Conclusions and Relevance   Exposure to several types of strong anticholinergic drugs is associated with an increased risk of dementia. These findings highlight the importance of reducing exposure to anticholinergic drugs in middle-aged and older people.

An estimated 47 million people worldwide were living with dementia in 2015, 1 while in the United States around 5.7 million people have Alzheimer dementia. 2 Modifiable risk factors, including hypertension, hearing loss, depression, diabetes, and smoking, account for around 35% of dementia cases. 1 Anticholinergic drugs are another potentially modifiable risk factor. This broad group of drugs acts by blocking the neurotransmitter acetylcholine in the central and peripheral nervous system and includes some antihistamines, antidepressants, and medications for gastrointestinal and bladder disorders. These medicines can have short-term adverse effects, including confusion and memory loss in older people, 3 - 6 but it is less certain whether long-term use increases the risk of dementia.

Observational studies of anticholinergic drugs and dementia risk 7 - 10 have generally been relatively small, only assessed short-term exposure, or were subject to recall bias. These studies were also susceptible to protopathic bias because they did not account for anticholinergic drugs being prescribed to treat early symptoms of dementia before diagnosis. A cohort study 11 that reduced protopathic bias by excluding prescriptions in the final year of follow-up found that higher cumulative anticholinergic drug use was associated with a significantly increased risk of dementia but had limited power for analysis of separate types of anticholinergic drug. A recent larger study 12 found varying risks associated with different types of anticholinergic drugs and concluded that further research should examine individual anticholinergic drug classes.

This study was designed to assess the association between cumulative anticholinergic drug use and risk of dementia in a large, representative British population. The study objectives were to estimate dementia risks associated with different types of anticholinergic medication including analyses of prescriptions up to 20 years before diagnosis.

Quiz Ref ID This was a nested case-control study within a cohort of patients registered with practices in England contributing to the QResearch database (version 41). QResearch is an anonymized research database of more than 30 million individuals in over 1500 general practices that includes data recorded prospectively from routine health care. The data include demographic information, medical diagnoses, prescriptions, referrals, laboratory results, and clinical values.

The study was approved in accordance with the agreed procedure with the East Midlands Derby Research Ethics Committee, waiving written informed consent for deidentified patient data.

The base cohort included patients 55 years and older registered during the study period (January 1, 2004, to January 31, 2016) without a diagnosis of dementia at study entry, defined as the latest of the study start date (January 1, 2004), the patient’s 55th birthday, date of registration with the practice plus 1 year, or date when the practice computer system was installed plus 1 year. The cohort were followed up until the earliest date of death, transfer to another practice, or the study end date (January 31, 2016).

Case patients were those diagnosed with dementia during follow-up, identified using clinical codes recorded in the practice records or linked Office of National Statistics death records. Patients with prescriptions for acetylcholinesterase-inhibiting drugs (donepezil, galantamine, memantine, and rivastigmine) but without a recorded diagnosis of dementia were also included because these drugs are licensed only for patients with dementia. Case patients with diagnostic codes for specific subtypes of dementia associated with Huntington disease, Parkinson disease, Creutzfeldt-Jakob disease, or human immunodeficiency virus (HIV) were excluded, as were patients diagnosed with Parkinson disease, Huntington disease, or multiple sclerosis to reduce indication bias.

Each case patient was matched to 5 controls by age (within 1 year), sex, general practice, and calendar time using incidence density sampling. 13 The index date for controls was the date of diagnosis for their matched case patient. Controls were excluded if they had a diagnosis of Parkinson disease, Huntington disease, or multiple sclerosis.

For the primary analyses, case patients and controls were only included if they had at least 11 years of recorded data prior to the index date, so that anticholinergic drug exposure could be assessed over a complete period of 10 years (excluding the 1-year period prior to the index date).

There is incomplete consensus on which drugs are considered as having anticholinergic properties. We used the approach of Gray et al, 11 which included drugs identified as having strong anticholinergic properties by the American Geriatrics Society 2012 Beers Criteria Update Expert Panel. 14 We also included additional drugs in the Beers 2015 updated list of strong anticholinergic drugs, 15 drugs listed as having a high anticholinergic burden in the Anticholinergic Cognitive Burden scale, 16 or identified as high-potency anticholinergics in a systematic review, 17 and some further drugs identified as having substantial anticholinergic properties in the British National Formulary; these may have been omitted in previous studies owing to their unavailability in the country where the study originated. eTable 1 in the Supplement shows the 56 anticholinergic drugs included in the study with details of their basis for inclusion.

We extracted details of prescriptions for the included anticholinergic drugs. To reduce protopathic biases, we did not include prescriptions issued in the year before the index date. In 2 additional analyses, we only included prescriptions issued up to 3 and up to 5 years before diagnosis.

The primary exposure variable was total cumulative anticholinergic drug exposure, which combined the different types of anticholinergic medications based on the method used by Gray et al. 11 This involved calculating the total dose of each prescription by multiplying the number of tablets prescribed by the dose per tablet (or equivalent for solutions, inhalers, injections, or patches). These values were then divided by minimum effective daily dose values recommended for use in older adults to give a number of standardized daily doses for each prescription. We used minimum effective dose values from the Geriatric Dosage Handbook 18 where available, and for the additional drugs we used the lowest recommended dose values (in older people if stated) in the British National Formulary (see eTable 1 in the Supplement ). We summed these standardized values over all anticholinergic prescriptions in the exposure time windows of interest to obtain total standardized daily doses (TSDDs) for each patient.

We also calculated TSDDs for each type of anticholinergic drug based on its main indication (antihistamines, antidepressants, antivertigo/antiemetic drugs, antiparkinson agents, antipsychotics, bladder antimuscarinics, skeletal muscle relaxants, gastrointestinal antispasmodics, antiarrhythmics, antiepileptic drugs, and antimuscarinic bronchodilators). As a sensitivity analysis we used World Health Organization (WHO)-defined daily dose (DDD) values ( https://www.whocc.no/atc_ddd_index/ ) to standardize the prescribed doses.

We accounted for potential confounding variables identified as risk factors for dementia or indications for anticholinergic drug use, 19 - 25 including body mass index, calculated as weight in kilograms divided by height in meters squared, 20 smoking status, 26 alcohol consumption, 27 Townsend deprivation score, 21 self-assigned ethnic group, 28 comorbidities (coronary heart disease, atrial fibrillation, heart failure, hypertension, hyperlipidemia, diabetes, stroke, subarachnoid hemorrhage, transient ischemic attack, renal failure, asthma, chronic obstructive pulmonary disease, anxiety, bipolar disorder, depression, Down syndrome, severe learning difficulties, schizophrenia, severe head injury, and cognitive decline/memory loss), and use of other medications (antihypertensive drugs, aspirin, hypnotic and anxiolytic drugs, nonsteroidal antiinflammatory drugs, statins). These variables were evaluated at the start of the exposure window for the primary analysis.

We used conditional logistic regression to estimate odds ratios (ORs) adjusted for the confounding variables. The exposure window in the main analyses comprised the 1 to 11 years before the index date. We categorized the anticholinergic exposure variable into 5 categories (0, 1-90, 91-365, 366-1095, and >1095 TSDDs). 11 Similarly we assessed associations for the 11 separate types of anticholinergic drug. Data were analyzed from May 2016 to June 2018.

We carried out subgroup analyses and interaction tests by age at index date (younger than 80 years and 80 years and older), by sex, and separately in case patients diagnosed with Alzheimer disease (including mixed), vascular dementia, and other or unspecified types of dementia with their respective matched controls.

We carried out the following sensitivity analyses:

(1) we assessed anticholinergic exposure over a time window of 3 to 13 years before the index date by excluding prescriptions in the 3 years before the index date;

(2) we assessed anticholinergic exposure over a time window of 5 to 20 years before the index date to further reduce potential protopathic biases and to assess associations for longer term exposure;

(3) we removed those anticholinergic drugs not included by Gray et al 11 so we could directly compare associations;

(4) we used multiple imputation by chained equations to replace missing values for body mass index, smoking status, and alcohol consumption. We created 10 multiply imputed data sets and combined results using Rubin rules 29 ; and

(5) we repeated the analyses using the cumulative exposure variable standardized by WHO DDD values.

We calculated population-attributable fractions by combining adjusted odds ratios (AORs) with the proportions of cases in the different categories of anticholinergic drug exposure. 30 , 31 We used P  < .01 (2-tailed) to determine statistical significance. We used Stata (version 15.1) for all analyses.

The base cohort comprised 3 638 582 individuals aged 55 to 100 years. During a total of 20 005 739 person-years of follow-up, 128 517 people were diagnosed with dementia. After applying exclusion criteria, 58 769 case patients and 225 574 matched controls were eligible for inclusion (eFigure 1 in the Supplement ). Case patients had a mean (SD) age of 82.4 (7.0) years at diagnosis, and 63.1% (37 105) were women ( Table 1 ); eTable 2 in the Supplement details that in the 36 666 cases where dementia type was recorded, 22 034 (60.1%) patients had a diagnosis of Alzheimer disease (including mixed), 13 313 (36.3%) had a diagnosis of vascular dementia, and 1319 (3.6%) had other types of dementia.

Table 2 presents information on comorbidities and prescribed medications. Prevalence values were slightly higher in case patients than in controls for all the comorbidities and prescribed medications.

Quiz Ref ID In the 1 to 11 years before the index date, 56.6% of case patients (33 253) and 51.0% of controls (115 096) were prescribed at least 1 anticholinergic drug, with a median of 6 prescriptions in case patients and 4 in controls ( Table 3 ). The most frequently prescribed types of anticholinergic drugs were antidepressants (27.1% of case patients, 23.3% of controls), antivertigo/antiemetic drugs (23.8% of case patients, 21.7% of controls), and bladder antimuscarinic drugs (11.7% of case patients, 8.3% of controls) (see eFigure 2 in the Supplement ). eTable 3 in the Supplement provides descriptive information for the 56 different anticholinergic drugs included in the study. eTables 4 and 5 in the Supplement present descriptive information on anticholinergic drugs prescribed in the 3 to 13 years and 5 to 20 years before the index date, respectively.

The AOR associated with total cumulative anticholinergic exposure in the 1 to 11 years before the index date increased from 1.06 (95% CI, 1.03-1.09) for 1 to 90 TSDDs to 1.49 (95% CI, 1.44-1.54) for more than 1095 TSDDs, compared with nonuse ( Table 4 ). Results were similar but with slightly lower ORs when restricted to the 3 to 13 and 5 to 20 years before the index date; for example, for the 5 to 20 years before the index date the AOR was 1.44 (95% CI, 1.32-1.57) for more than 1095 TSDDs ( Table 4 ).

Quiz Ref ID Among specific types of anticholinergic drugs there were significant increases in risk associated with use of antidepressants, antiparkinson drugs, antipsychotics, bladder antimuscarinics, and antiepileptic drugs ( Table 5 ). Adjusted odds ratios in the highest exposure category (>1095 TSDDs) were 1.29 (95% CI, 1.24-1.34) for antidepressants, 1.52 (95% CI, 1.16-2.00) for antiparkinson drugs, 1.70 (95% CI, 1.53-1.90) for antipsychotics, 1.65 (95% CI, 1.56-1.75) for bladder antimuscarinics, and 1.39 (95% CI, 1.22-1.57) for antiepileptic drugs, all compared with nonuse. For antivertigo/antiemetic drugs, as detailed in Table 5 , there was a significantly increased risk associated with 366 to 1095 TSDDs, but not for the highest exposure category. There were no significant increases in risk associated with antihistamines, skeletal muscle relaxants, gastrointestinal antispasmodics, antiarrhythmics, or antimuscarinic bronchodilators, although the numbers of patients exposed were small for skeletal muscle relaxants and antiarrhythmics. Patterns of risk were similar in the 3- to 13- and 5- to 20-year exposure windows (eTable 6 in the Supplement ), except for antipsychotic drug exposure in the 5- to 20-year window, where there were no statistically significant increases in risk; the AOR for more than 1095 TSDDs was 1.23 (95% CI, 0.93-1.62). For some drug types, numbers were too small to allow analysis for the 5 to 20 years before the index date (eTable 7 in the Supplement ).

The population-attributable fraction associated with total anticholinergic drug exposure during the 1 to 11 years before diagnosis was 10.3%. For the 3 to 13 years before diagnosis, it was 9.0%, and it was 9.7% for the 5 to 20 years before diagnosis.

There were stronger associations in case patients diagnosed before age 80 years than at 80 years or older, both for total drug exposure and for antidepressants, antipsychotics, and bladder antimuscarinics (eTable 8 in the Supplement ). For total cumulative exposure, the AOR for more than 1095 TSDDs was 1.81 (95% CI, 1.71-1.91) in cases diagnosed before age 80 years, whereas it was 1.35 (95% CI, 1.30-1.40) in cases diagnosed at 80 years or older. Associations were similar in men and women (eTable 9 in the Supplement ).

Adjusted odds ratios were generally higher for vascular dementia than Alzheimer disease (eTable 10 in the Supplement ); for example, in the 1- to 11-year exposure window, the AOR for more than 1095 TSDDs was 1.68 (95% CI, 1.57-1.79) for vascular dementia, and 1.37 (95% CI, 1.30-1.44) for Alzheimer disease.

Results were similar when DDD values were used to calculate cumulative exposure (eTable 12 in the Supplement ). Sensitivity analyses using multiply imputed data (eTable 13 in the Supplement ) or restricted to anticholinergic drugs included in the study by Gray et al 11 (eTable 14 in the Supplement ) did not change study findings.

This large, nested case-control study found an increased risk of dementia associated with anticholinergic medication use. Associations were strongest for the anticholinergic antidepressants, bladder antimuscarinics, antipsychotics, and antiepileptic drugs. Quiz Ref ID Associations were also stronger in cases diagnosed before the age of 80 years and in cases diagnosed with vascular dementia rather than with Alzheimer disease. There were no significantly increased risks for antihistamines, gastrointestinal antispasmodics, antimuscarinic bronchodilators, antiarrhythmics, or skeletal muscle relaxants, although the numbers of patients prescribed skeletal muscle relaxants and antiarrhythmic drugs were small, giving imprecise estimates.

There was nearly a 50% increased odds of dementia associated with total anticholinergic exposure of more than 1095 TSDDs within a 10-year period, which is equivalent to 3 years’ daily use of a single strong anticholinergic medication at the minimum effective dose recommended for older people. This observational study has shown associations, but is not able to evaluate causality. However, if this association is causal, the population-attributable fractions indicate that around 10% of dementia diagnoses are attributable to anticholinergic drug exposure, which would equate, for example, to around 20 000 of the 209 600 new cases of dementia per year in the United Kingdom. 32 This proportion is sizeable and is comparable with estimates for other modifiable risk factors for dementia, such as 5% for midlife hypertension, 3% for diabetes, 14% for later-life smoking, and 6.5% for physical inactivity. 1

The finding of more pronounced associations for vascular dementia than for other types is novel. It raises questions about the mechanisms by which anticholinergic drugs may increase the risk of subsequent dementia. These may include vascular and inflammatory changes, 33 , 34 as well as the more obvious mechanism of chronic cholinergic depletion. Perhaps the mechanism underlying the potential effects of anticholinergic drugs is not solely through blocking acetylcholine and causing an excess of Alzheimer disease, so future research should give consideration to possible mechanisms.

We included a large representative sample of people diagnosed with dementia and matched controls. All eligible case patients and controls were included, so there is no selection bias due to nonresponse, and data were recorded prospectively, so results are not susceptible to recall bias. Comprehensive data on prescriptions meant that we could derive a measure of total anticholinergic drug exposure, which accounted for the quantity and dose prescribed.

Our findings are consistent with other studies, including a US cohort study of 3434 participants, 11 which reported a hazard ratio of 1.54 (95% CI, 1.21-1.96) for the highest exposure category (>1095 TSDDs), similar to our AOR of 1.49 (95% CI, 1.44-1.54). With our larger sample size we could also examine specific types of anticholinergic drugs and account for a broader range of confounders. A study by Richardson et al, 12 using another United Kingdom primary care database (CPRD), reported findings similar to ours, despite some differences in the drugs included, exposure measures used, exposure windows, and the confounding variables accounted for. For example, we included drugs based on those identified as having strong anticholinergic properties by the American Geriatrics Society 2012 Beers Criteria Update Expert Panel, 14 whereas Richardson et al 12 used drugs included in the 2012 update of the Anticholinergic Cognitive Burden scale. 35 While both CPRD and QResearch are large United Kingdom databases, QResearch is the most nationally representative, while CPRD is more geographically restricted. 36 Despite these differences, Richardson et al 12 also found increases in dementia risk for the groups of antidepressant, urological, and antiparkinson drugs considered and no associations for gastrointestinal or antihistamine drugs. The coherence of findings in these 3 studies provides strong evidence for reliability and robustness of the associations across different study designs, countries, and settings. Nevertheless, the possibility of residual confounding remains, and it is impossible to entirely exclude protopathic effects arising from treatment for very early preclinical effects of dementia.

A limitation is that some patients may not have taken their prescribed medication or not taken the dose prescribed, leading to exposure misclassification. This misclassification, if nondifferential, would tend to reduce ORs and might explain the lack of association for antihistamines and the highest exposure category of antivertigo drugs. Our identification of patients with dementia was based on recorded diagnoses or treatment with acetylcholinesterase-inhibiting drugs rather than screening of the entire study population. This means that there will be underascertainment of dementia cases, so some controls may have had undiagnosed dementia, which again would tend to underestimate associations with drug exposure.

Quiz Ref ID The analysis accounted for a wide range of potential confounding variables, but in an observational study, there is potential for residual confounding and indication bias. We endeavored to reduce protopathic bias by excluding prescriptions in the year before diagnosis and in the 3 and 5 years before diagnosis in sensitivity analyses. The increased risks identified for specific drug groups in the main analysis remained in these sensitivity analyses except for the association with antipsychotic drugs, which was not significant when prescriptions in the 5 years before diagnosis were excluded, suggesting that the association may be due to protopathic bias. Some bias due to prescriptions for prodromal symptoms occurring more than 5 years before diagnosis may remain because, while there is an average of 1 to 5 years between onset of symptoms and dementia diagnosis, 37 , 38 some early symptoms such as cognitive decline and depression can start to emerge up to 10 years before diagnosis. 39 , 40 There is ongoing debate, however, as to whether depression is a risk factor for dementia rather than a prodromal symptom. 1 , 41

The present study adds further evidence of potential risks associated with strong anticholinergic drugs, particularly those that are antidepressants, bladder antimuscarinic drugs, antiparkinson drugs, and epilepsy drugs. Adverse effects should be considered alongside benefits when these drugs are prescribed, and alternative treatments should be considered where possible, such as other types of antidepressant or nonpharmacological treatments for depression, alternative antiparkinsonian drugs, and bladder training or mirabegron for overactive bladders. 42 , 43 We found greater increases in risk associated with people diagnosed with dementia before the age of 80, which indicates that anticholinergic drugs should be prescribed with caution in middle-aged and older people.

Accepted for Publication: February 19, 2019

Published Online: June 24, 2019. doi:10.1001/jamainternmed.2019.0677

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2019 Coupland CAC et al. JAMA Internal Medicine .

Corresponding Author: Carol A. C. Coupland, PhD, Division of Primary Care, University of Nottingham, University Park, 13th Floor, Tower Building, Nottingham NG7 2RD, United Kingdom ( [email protected] ).

Author Contributions: Dr Coupland had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Coupland, Dening, Morriss, Moore, Hippisley-Cox.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Coupland, Dening, Hippisley-Cox.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Coupland, Hill.

Obtained funding: Coupland, Morriss, Hippisley-Cox.

Administrative, technical, or material support: Dening, Morriss, Moore, Hippisley-Cox.

Study supervision: Coupland.

Conflict of Interest Disclosures: Dr Coupland reported personal fees from ClinRisk Ltd outside the submitted work. Julia Hippisley-Cox reported nonfinancial support from QResearch and personal fees from ClinRisk Ltd outside the submitted work. No other disclosures were reported.

Funding/Support: The project was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project number 265). Additional funding was provided by the Faculty of Medicine and Health Sciences Research Board, University of Nottingham. QResearch receives support from the NIHR Nottingham Biomedical Research Centre. Dr Morriss’s contribution to the study has been funded through the NIHR Collaboration for Leadership in Applied Health Research and Care East 15 Midlands (CLAHRC EM), NIHR MindTech, MedTech, and In Vitro Cooperative. Drs Hippisley-Cox, Coupland, and Morriss acknowledge funding from the NIHR Nottingham Biomedical Research Centre.

Role of the Funder/Sponsor: The NIHR approved the study design, but did not play a role in the conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: This article presents independent research funded by the NIHR School for Primary Care Research. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The Office for National Statistics bears no responsibility for the analysis or interpretation of the data.

Additional Contributions: We acknowledge the contribution of practices who contribute to the QResearch database and to Egton Medical Information Systems (EMIS) and the University of Nottingham for expertise in establishing, developing, and supporting the database. We thank the Office for National Statistics for providing the mortality data. This work uses data provided by patients and collected by the NHS as part of their care and support. None of the additional contributors who assisted with the study received compensation.

Data Sharing Statement: The patient level data from the QResearch database are specifically licensed according to its governance framework. See http://www.qresearch.org for further details.

  • Register for email alerts with links to free full-text articles
  • Access PDFs of free articles
  • Manage your interests
  • Save searches and receive search alerts

dementia case study

Case study 3: Joan

Download the Full Case Study for Joan PDF file (58KB)

Download the Full Case Study for Joan PDF file (58KB)

Download the Vignette for Joan PDF file (49KB)

Download the Vignette for Joan PDF file (49KB)

Name: Joan O’Leary

Gender: Female

Ethnicity: White Irish

Religion: Catholic

Disability: dementia with Lewy Bodies

First language: English

Family: estranged and in Ireland

Location: village in South West

Joan lives in a house in a small village. She has lived there for 28 years. She has two dogs and 11 chickens. Joan has always been quite private but is well known in her village. She goes to the nearby town on the bus to church, visits the local shop and community café, and goes away frequently. Joan goes for a long walk with her dogs each day. Joan hadn’t been to her GP for 6 years.

The café owner, Margaret, was worried about Joan. Joan has appeared very forgetful and disorientated. She has been seen in the village wearing her slippers and her neighbours have seen her out late at night with her dogs. Margaret went to Joan’s house and wasn’t allowed in but thought there was quite a strong smell.

Margaret phoned the GP in the village who went round to Joan’s house and persuaded her to have some tests. She has been diagnosed with moderate dementia with Lewy Bodies.

The GP phoned social services and you go out to do an assessment.

Download the Ecogram for Joan PDF file (48KB)

Download the Ecogram for Joan PDF file (48KB)

dementia case study

You told me that you didn’t really want to have an assessment. I explained that your GP had asked me to talk to you about what is happening for you at the moment because you have been diagnosed with dementia. You agreed to the assessment but you don’t want to have lots of information about you written down. These are the main things that you were happy for me to know.

At the moment you have capacity to make decisions about whether to have support or not. In the future you may find it more difficult to make decisions or not be able to make a particular decision. We talked about you arranging a lasting power of attorney and also doing an advanced care plan.

What’s important to you?

You said that you are quite a private person. You have two dogs and 11 chickens. You like to walk the dogs, go to the café and go to church in Lyme Regis. You take eggs to the café for Margaret (the owner) to sell.

You are a talented artist and have a small pottery shed and kiln in the garden.

You like to plan trips to different local areas and travel using the bus.

Your family is in Ireland and you haven’t seen them for many years. Your Catholic faith is important to you. You are a Eucharistic minister and you take holy communion to parishioners who can’t get to church.

What’s happening for you at the moment?

Your GP asked me to come and see you because you have been diagnosed with moderate dementia with Lewy Bodies.

You told me that you understand this is similar to Parkinson’s disease. You have noticed that your muscles have been aching and that you are not sleeping well.

The GP explained to me that you might find that you are unsteady at times or have tremors, and you might have some hallucinations, as these are common with this kind of dementia.

Margaret told me that you have been into the village wearing your slippers and that your neighbours have noticed you being out late at night which you agreed is unusual for you. However, you also told me that what you do is your own business. We talked about the risks that are attached to you going out late or not wearing appropriate clothing. You told me that you don’t think it is a problem, as you have always walked a lot and always find your way home. Also you said that you have the dogs with you when you are out and they know their way home. You already used reminders around the house so you said you would put a reminder on the front door to check your coat and shoes.

We talked about how you were managing day to day. You told me that you think you are managing well. However you haven’t been able to put the rubbish out or to clean out the chickens. You also have not been able to clean the bathroom. This is because you sometimes feel dizzy and your arms ache.

What is the impact on you?

You are concerned that people, like me, might start interfering with your life because of your illness.

What would you like to happen in the future?

You said that you want to continue to live in your home, looking after your animals, and doing the things that you currently do. We talked about what you think will happen and you said that you knew you will become less well. If you did need help in the future, you would like to arrange this yourself. We talked about having a personal assistant in the future.

How might we achieve this?

We talked about the importance of you having the right support in the future. You agreed that I could share this assessment with Margaret and your GP so that if you are not well enough to ask for advice or assistance in the future, they can ring the council. You will discuss a lasting power of attorney for finances, and health and care for Margaret. And you will do an advanced care plan with your GP. You will also talk to your GP about any medical support that might be available now, for example memory clinic and help with sleeping.

We also called your Parish Priest, Father Philip, and let him know that you have been diagnosed with dementia. He will ask a parishioner to give you a lift to church if you aren’t able to go on the bus.

You agreed to some help with keeping the animals and putting the rubbish out. Margaret and you will make an advert to put in the café window.

What strengths and support networks do you have to help you?

You said you are a very independent person. You have managed your home and finances for many years. You are managing well despite your illness and have strategies in place for things you might forget. You are active and have wide interests and talents. You also earn money through selling eggs. You contribute to the community through the parish. You are familiar with your local area and are used to travelling around.

You have a good relationship with Margaret, with your parish priest and with your GP. They are all willing and able to offer support.

Social care assessor conclusion

You have recently been diagnosed with dementia. This is starting to have an impact on your life and because of the nature of the illness the impact will increase as time goes on.

You have a lot of strengths to draw on and a good support network. You want to remain independent and, although there are some concerns about how you are managing, these are currently relatively minor and you have identified how to minimise them.

It is important that you plan ahead so that you remain in control of what happens and so that you can continue to achieve what matters to you for as long as possible.

Eligibility decision

You are not currently eligible for care and support under the Care Act 2014 because you can currently manage all day to day activities, apart from needing some help with maintaining your home. However, we have done a care and support plan that says what you will do to get help with the house and to plan for the future.

What’s happening next

See care and support plan .

Download the care and support plan document PDF file (178KB)

Download the care and support plan document PDF file (178KB)

Share

  • Equal opportunities
  • Complaints procedure
  • Terms and conditions
  • Privacy policy
  • Cookie policy
  • Accessibility

Working in Partnership with the Department Health

Identifying Mixed Dementia With Lewy Bodies and Alzheimer Disease Using Multitracer PET Imaging: A Case Study

Affiliation.

  • 1 Department of Neurology, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, China.
  • PMID: 38350092
  • DOI: 10.1097/RLU.0000000000005081

We reported imaging findings with complex signs that were corresponded with both dementia with Lewy bodies (DLB) and Alzheimer disease (AD) in the case of a 78-year-old woman. Initially suspected as DLB due to cognitive and movement issues, diagnostic support included the cingulate island sign on 18F-FDG PET, positive 131I-MIBG cardiac scintigraphy, and DAT PET. However, MRI indicated hippocampal atrophy, and 18F-FDG PET showed hypometabolism in the medial temporal lobe, suggesting the possibility of concomitant AD. Subsequent detection of β-amyloid pathology and tau accumulation in the brain further supported the concurrent presence of AD pathology.

Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.

U.S. flag

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

  • Publications
  • Account settings
  • Advanced Search
  • Journal List
  • Indian J Psychol Med
  • v.43(5 Suppl); 2021 Sep

Ethical Issues in Dementia Research

Mina chandra.

1 Centre of Excellence in Mental Health, Atal Bihari Vajpayee Institute of Medical Sciences and Dr Ram Manohar Lohia Hospital, New Delhi, Delhi, India.

Vijay Harbishettar

2 Health Heal Geriatric Healthcare Services, Bengaluru, Karnataka, India.

Harbandna Sawhney

Shabbir amanullah.

3 Woodstock General Hospital, Woodstock, Ontario, Canada.

Dementia is a global public health issue with an urgent need for developing newer and more effective treatment strategies. Research in the area of dementia, however, poses unique ethical and legal challenges. Epidemiological studies, studies on pharmacological and non-pharmacological interventions have to deal with obtaining consent from persons with cognitive impairments, those from diverse cultural groups and need to contend with privacy and confidentiality issues. The caregiver support intervention research has not yet translated into policy change and effective clinical care. Biomedical research that involves invasive procedures may not translate into short- or long-term therapeutic benefits but is necessary research. Palliative care research in dementia has to deal with ethical issues involving people at end-of-life research. Proposed research may not receive approval, citing necessary safeguards to the vulnerable older people against invasive studies even when it is least invasive. This article aims to review the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective.

Some of the safeguards for ethical research include determining capacity to consent, obtaining advanced directives in early stages and proxy consent from caregivers, obtaining informed consent in cognitively impaired individuals. Future research policies need to consider the logistics of involving older people in research, enhancing caregiver support, and encouraging supportive decision-making. It will also need to address developing capacity assessment tools while addressing advanced care planning that will ensure the well-being of subjects in research.

Background:

Dementia has become a global public health issue, with hospitalization rates being 65% higher in seniors with dementia than others. 1 , 2 The pressures on healthcare systems mean an urgent need to develop robust preventive and treatment strategies for dementia, which requires multidisciplinary research. However, the patient’s stage of illness and ability to engage in discussions around the merits of participating in research and caregiver concerns is an important aspect of dementia research.

Hence, dementia research poses unique ethical challenges compared to populations with other diseases, which has led to the evolution of an ethical framework for dementia research. This article aims to review and give a viewpoint on the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective.

Materials and Methods

Systematic Review of PubMed was performed using the following search string to obtain studies on ethical issues in dementia research:

(dementia[Title] OR ncd[Title] OR neurocognitive[Title] OR alzheimer[Title] OR cognitive[Title] or OR cognition[Title] OR neuropsychology[Title] OR neuropsychological[Title] OR pick[Title] OR lewy[Title] OR frontotemporal[Title] OR huntington[Title] OR prion[Title]) AND (ethics[Title] OR ethical[Title]) AND (research[Title])

Seventy six results were obtained, which included publications from 1984 to 2021. Results were filtered for the availability of free full text and, subsequently, 15 studies were left. References within the articles were reviewed to obtain a comprehensive review.

These articles were reviewed for relevance, and all were found suitable for inclusion in this review.

These articles were evaluated in detail (authors MC and HS ) to create the first draft. The second draft incorporated the clinical and research experience of the authors who had varying levels of experience. An in-depth discussion was held with all authors regarding various aspects of the paper on a virtual platform. The inputs from all authors were combined to formulate a viewpoint on ethical issues in dementia research.

The methodology is illustrated in detail in Figure 1 .

An external file that holds a picture, illustration, etc.
Object name is 10.1177_02537176211022224-fig1.jpg

Ethical Issues Across Specific Types of Dementia Research

Epidemiological studies in dementia.

Epidemiological studies have dealt with consent issues in cognitively impaired populations with low baseline educational attainment or culturally diverse populations. Furthermore, there are often privacy and confidentiality issues in field settings, issues around medical care, and rehabilitative measures for identified persons with dementia (PwD). This raises questions about basic ethical issues of beneficence and nonmaleficence. Another ethical aspect of dementia in low- and middle-income countries (LMIC) like India is the lack of culturally sensitive screening and evaluation instruments. Concerns about the validity of nosological criteria of dementia in uneducated, multiethnic, multilingual populations have not been adequately raised or addressed. There is a genuine concern that instruments designed for the Western population may not be appropriate and may end up mislabeling and stigmatizing some with only age-related cognitive impairment. This is especially significant given that the treatment gap in dementia in LMICs is more than 90%. 3

Dementia research has also investigated modifiable risk factors for dementia to identify targets for early intervention. Lower levels of educational attainment and decreased physical activity levels have been noted to be associated with Alzheimer’s disease (AD). 4 Hence, the population-level increase in educational status and physical activity levels can potentially reduce the risk of cognitive impairment.

Biomarker Research in Dementia

A major ethical issue in research on biomarkers in dementia has been a disproportionately excessive focus on AD, usually diagnosed as “probable AD” 5 even though other types of dementia commonly exist in clinical practice. Similarly, an emphasis on neuroimaging and biomarkers as indicators of dementia risk has not translated into clinical practice. 6 , 7 For example, it is known that up to 50% decrease in Cerebrospinal Fluid (CSF) Aβ 42 concentrations and twofold to threefold increase in CSF total tau increase in F2-isoprostanes occurs in AD or mild cognitive impairment. Still, these tests are not routinely performed in clinical practice either for diagnosis or prognosis. 8

This leads to a fundamental question on the nature of dementia research, which does not yield any diagnostic or therapeutic benefit to patients with dementia in the short or long term while subjecting cognitively impaired individuals for invasive and painful procedures.

Research on Pharmacological and Nonpharmacological Interventions for Dementia

Both pharmacological and nonpharmacological interventions have been studied for dementia. While pharmacological intervention can be standardized, nonpharmacological interventions may not use a standardized treatment manual, which is ethically questionable. There is also a need to develop standardized methodologies for assessing nonpharmacological interventions to reach a more robust conclusion.

Among pharmacological interventions, there have been extensive trials on acetylcholinesterase inhibitors and memantine. 9 However, since 2003, no new drug has been approved by the FDA to treat AD. More than 200 therapeutic agents have been assessed, and then either they are abandoned or have failed investigational programs. 10

Some Pharmaceutical companies like Pfizer have abandoned dementia research. 11

A pertinent ethical question is about the rights of the participants with dementia who participated in these failed trials in good faith.

Caregiver Support Interventions Research

Caregivers of patients of dementia face many challenges, with studies reporting 30%–55% of caregivers experience anxiety or depressive symptoms, which may adversely impact the quality of care provided to the patient. 12 – 14 Although studies have shown that psychosocial interventions may be effective in dementia caregivers to reduce their burden, they often face logistic barriers, stigma among caregivers, and a lack of structured instructional manuals. 15

The beneficial impact of psychosocial intervention for dementia includes delayed institutionalization of patients, improved symptomatology, and providing services that caregivers highly value. 16 However, despite robust evidence, caregiver interventions have not been translated into policy domain and clinical practice. This is not ethical considering caregivers have a significant burden because of caring for patients with dementia. The lack of translation of evidence-based, low-cost interventions for dementia in policy and clinical care across many nations globally raises important ethical questions for the future research.

Clinical Trials

For developing new drugs for the treatment of PwD, clinical trials are essential, but it requires well written informed consent assent process and rigorous documentation before recruitment. Participants will need more intense monitoring compared to cognitively intact individuals. 17

There is concern about the robustness of the informed consent process for clinical trials for dementia conducted in LMICs with a population with limited baseline educational attainment. In some situations, it may be necessary that an independent clinician may undertake capacity assessments and informed consent to get involved in research instead of those research staff involved in the study.

Genetic Testing

Genetic testing for dementia includes testings for symptomatic individuals (diagnostic testing) and asymptomatic at-risk individuals (predictive testing).

Advance directives may be useful in such cases. As genetic testing results may affect the patient and other family members, familial genetic counseling is essential before testing and for disclosure of results. 18

End of Life/Palliative Care Issues in Dementia Research

It may be difficult to determine the lifespan of patients in advanced stages of dementia, and many patients receive palliative care in hospices in high-income settings. 19 Dementia research may include some participants in palliative care or who enter palliative care during the research. This raises ethical dilemmas of prolonging life at the cost of quality of life to complete research. Transference of a patient in the end stages of life to an unfamiliar setting may also lead to ethical dilemmas. The ability to participate in research may vary based on the clinical condition, and this poses challenges for the researcher, having to reassess this every time. Many exclusions of research participants during research may not serve the purpose, and this poses an ethical question to those who are participating, whether the study serves its purpose.

Ethical Dilemmas in Multicentric International Research

The 10/66 Dementia Research Group found that even though 66% of people with dementia live in developing countries, less than 10% of dementia research is conducted. Underrepresentation of LMIC populations with large absolute numbers of dementia is a fundamental ethical issue in dementia research and must be addressed by policymakers and grant agencies.

Even within LMICs, ethnic, linguistic, and religious minorities are underrepresented, necessitating the development of novel strategies to improve the participation of minority groups. 20 Equitable partnership and participation in research across social groups is an important ethical goal in dementia research pertaining to rights of participation and justice.

Researchers lead most multicentric international dementia research in LMICs from high-income settings. It is often found that many such protocols contain research instruments that have not been culturally and linguistically validated for the target population resulting in underreporting or overreporting of cognitive impairment and dementia. In addition, the informed consent documents in multicentric international trials may not be adequately translated to cater to the informational needs of target populations with low educational attainment, as is often the case in LMICs. They may result in a lack of awareness of rights and compensation to participants.

Ethical Aspects of Data Sharing Agreement to Enhance Research Outputs

For dementia research to reach any breakthrough, it is important to use harmonized protocols and share anonymized data with strict precautions for confidentiality, privacy, and data stewardship for implementing big data analytics. Alzheimer Europe gave a report, “Data Sharing in Dementia Research,” which reviews the recent changes in research policy and gives recommendations to aid data sharing in dementia research. This is ethical utilization of limited resources for dementia research, but such initiatives are lacking in the Asian context. 21

Ethical Issues Specific to Dementia Research

Memory impairment, poor comprehension, hearing, or visual impairment at varying degrees is common in dementia patients. This poses a challenge for the investigators to obtain consent, and more participants with impaired ability to comprehend information will get excluded from the study. On the other hand, vulnerable PwD in institutional care may agree/disagree to participate in research due to possible coercion and fear. Some studies on PwD in advanced stages include PwD with sensory deficits, which are not likely to have competency. This makes such studies difficult due to ethical dilemmas and leaves a gap in the understanding of dementia and probable medical progress for the care of such patients. 22 – 24 The progressive and continuous nature of the illness may necessitate a periodic reassessment of capacity for consent to participate in the study.

If PwD cannot have impaired capacity to give consent, proxy consent from caregivers can be taken. 25

An ethical issue with dementia research is that persons without supportive family or carers may be excluded from the research (and its benefits) because they lack adequate representation. 26

In the case of proxy consent, the patient’s beliefs must be kept in mind while making a decision. 27 Advanced directive may help in this aspect. However, some ethical issues emerge when proxy decision-makers decide as per their beliefs about the right decision for the patient. 28 Some research has shown that the data provided by proxies may differ from data provided by PwD. 29 – 31 In the decision-making in dementia research by caregivers, it is essential for researchers or the ethical committees to ensure that there is no secondary gain by the caregiver considering the late stage of illness and issues around property, will, or any other form.

In dementia research, it is required to obtain both informed consent and assent. 32 Assent may be defined as “the agreement to participate in research-based upon less than full understanding.” 33 In contrast to informed consent, which requires an individual to understand the research protocol, 34 to give assent, an individual must only have a minimal level of understanding to make a meaningful choice. 35 An individual’s level of cooperation may be indicative of assent or dissent. 36 Frustration, discomfort, unhappiness, or passivity may indicate a lack of cooperation in research or dissent. 37 A study which audiotaped informed consent encounters for research concluded that any interpretation regarding assent should be made with caution for PwD. Also, along with the cognitive aspect, the emotional and social dimensions of informed consent warrant attention. 38

One of the main concerns for ethical issues in dementia is related to involving older people in research. Possible barriers may include physical and cognitive impairments, lack of transport, a lower threshold for burden, changes in routine, and negative beliefs about medication. 39 , 40 These factors may affect the risk–benefit ratio for participation in research. Issues of beneficence versus nonmaleficence may need to be addressed.

Recruitment and maintenance of older people in studies may also involve higher costs. 41

On the other hand, failure to include older people in studies could lead to inequities in healthcare and biased results. 42

A databases search (PubMed and CINAHL) has revealed that only 3%–6% of clinical trials were based on older populations. 40 Studies have shown that clinical trials may sometimes involve participants who are not representative of those for whom the medication is most likely to be used. Older individuals are often excluded from the trials. 43 , 44

Respect for autonomy may be difficult in PwDs on account of impaired cognition.

Researchers and Institutional Ethics Committees and Institutional Review Boards can uphold the ethical principles of respect, beneficence, and justice through the informed consent/assent process and objectively assess the risks and benefits of participation in research. 45

Higher involvement of caregivers in dementia research safeguards the rights of PwD.

Patient and caregiver should share a harmonious relationship. However, in some cases, PwD may object to being accompanied by a caregiver for participation in a study. 46 It has also been suggested that the involvement of the caretaker may amount to paternalism. 47 Table 1 highlights the ethical issues in dementia research.

Ethical Issues Specific to Dementia Research.

The progressive nature of the disease in dementia with poor interepisodic recovery, involvement of older age group, high caregiver burden, and issues around consent poses unique ethical challenges around dementia research. Developing decisional capacity assessment tools, advanced care planning, and a standardized approach to research would help in addressing the ethical barriers

  • Involving the elderly population: Dementia research should include all age groups and all stages of severity so that results are not biased.
  • Research tools: Standardized manuals for nonpharmacological interventions need to be developed for a more structured research approach. Furthermore, developing culturally and linguistically validated instruments and harmonized protocols would help in a uniform approach to research.
  • Consent: Supportive decision/assent making should be done to ensure ethical safeguards. It should be assumed that PwD has capacity unless proved otherwise.
  • Advanced care planning: In the early stages of dementia, advanced directives should be formed not just for clinical care but also for research participation. This would enhance research participation while upholding ethics.

Along with capacity assessment tools that check decision making in specific areas, knowledge of the patient’s hopes, beliefs, and personal history should also be used to document decision making and withdrawal of cons. 48

Data Safety Management Boards—Serious Adverse Events reporting as per established protocols enhances ethical conduct of dementia research. Scientists should make the study results accessible to the wider scientific community by sharing them in institutional repositories. This allows for secondary data research and avoids unnecessary research in a vulnerable population. At the same time, data sharing and attendant scrutiny increase confidence in research implementation as per ethical and legal regulatory framework.

Recommendations for the ethics committee and regulatory authority are illustrated in Table 2 .

Recommendations for Ethics Committee and Regulatory Authority

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors received no financial support for the research, authorship, and/or publication of this article.

The Daily

New study uncovers why gene is believed to be responsible for ALS and dementia

Researchers at  Case Western Reserve University School of Medicine  have discovered why a gene that, when mutated, is a common cause of two debilitating brain diseases: amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). 

The study found that the protein generated by this mutant gene, C9ORF72, influences the immune system by regulating the production of Interleukin 17A (IL-17A), a potent inflammatory molecule.

ALS is a neurodegenerative disease that results in progressive paralysis due to the loss of neurons in the central nervous system. ALS patients often have pre-existing autoimmune disease and inflammation of the brain that worsens as muscle function declines.

dementia case study

Aaron Burberry , an assistant professor of pathology at the School of Medicine and the study’s principal investigator, discovered in mouse models with the C9ORF72 mutation—which affects roughly 10% of ALS patients—brain inflammation decreased and mobility improved when the IL-17A gene was blocked.

Burberry and his research team also discovered that another molecule found in the gut (CD80) contributes to inflammation in response to elevations of IL-17A in the brain. Their research was recently published in the peer-reviewed journal  Science Translational Medicine.

“Our research indicates that IL-17A blockade may be quickly repurposed to treat ALS patients to slow down the progression of their disease or possibly stop ALS from ever occurring,” Burberry said.

Treatments that block IL-17A have already been approved by the U.S. Food and Drug Administration to treat autoimmune diseases, such as psoriasis and rheumatoid arthritis. These comparable therapies may help ALS patients stop or perhaps reverse the disease’s progression.

“For people living with a neurodegenerative disease,” Burberry said, “our work offers hope for a future where quality-of-life and cognition can be maintained long after their diagnosis.” 

Burberry will next investigate the mechanisms by which C9ORF72 inhibits IL-17A in lymphoid cells and identify the elements of the gut microbiome that are causing inflammation in the brain.

For more information, contact Patty Zamora at [email protected] .

IMAGES

  1. Dementia Case Study Gared

    dementia case study

  2. (PDF) Dementia in the workplace case study research: understanding the experiences of

    dementia case study

  3. dementia case study.pdf

    dementia case study

  4. SOLUTION: Case study dementia physical aggression ron jackson 87 years old latest grade a

    dementia case study

  5. Dementia Case Study

    dementia case study

  6. Dementia vs Delerium Case Study and Simulation Updated-1 1 .docx

    dementia case study

VIDEO

  1. Is This True For Dementia Care?

  2. LIVING WITH DEMENTIA EP. 19

  3. LIVING WITH DEMENTIA EP. 22

  4. Understanding Dementia

  5. Dementia case study

  6. LIVING WITH DEMENTIA EP. 15

COMMENTS

  1. Case Report of a 63-Year-Old Patient With Alzheimer Disease ...

    Here, we report a case of a 63-year-old woman (at the time of death) with the clinical history consistent with Alzheimer D, an autopsy with brain histopathology supporting Alzheimer disease (AD), congophylic angiopathy, and Lewy Body pathology, and whose medical genetic testing reveals a novel PSEN2 mutation of adenosine replacing cytosine at co...

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

    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, personality changes, and...

  3. A Case Report of a 37-Year-Old Alzheimer's Disease Patient with

    We report here a case of a 37-year-old male patient whose initial complaints comprised of gradual cognitive decline, apraxia, disorientation and sleep disturbances. 18F-Florbetaben amyloid imaging of the patient showed diffuse amyloid retention with prominent striatal uptake.

  4. PDF Dementia Through Clinical Cases

    Dementia Through Clinical Cases Fireside Chat - Alzheimer's Association 7th Annual Kansas Education Conference on Dementia Ryan W. Schroeder, PsyD, LP, ABPP-CN Board Certified Clinical Neuropsychologist Primary cognitive change: -Difficulty learning and remembering new information -Able to remember old information Common behavior changes:

  5. 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.

  6. Dementia case study with questions and answers

    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.

  7. Case Studies in Dementia

    This collection of case studies from around the world illustrates both common and unusual causes of dementia, emphasizing clinical reasoning, integrative thinking and problem-solving skills. Each case consists of a clinical history, examination findings and special investigations, followed by diagnosis and discussion.

  8. Vascular Cognitive Impairment (Case 26)

    An 85-year-old woman with hypertension and hyperlipidemia presented with gradual and progressive cognitive impairment for more than 2 years, involving cognitive domains of memory, executive function, visuospatial and mood. She has short-term memory loss such as forgetting whether she has eaten or showered.

  9. Case Report of a 63-Year-Old Patient With Alzheimer Disease and a Novel

    Among other mechanisms, its presence reduces clearance of Aβ42 from the brain and increases glial activation.8 Although the apoЄ4 allele is known to lower the age of onset of dementia in late onset AD, it has not been clearly shown to influence age of onset of EOAD in a limited case series.9 It should be noted that heterozygote state may have ...

  10. Case Studies in Dementia

    Covering the spectrum of cognitive decline in aging using illustrative cases, from mild impairment to dementia, this set of case studies offers a wide-ranging guide for trainees and clinicians. This second volume includes updated research diagnostic criteria and details of new imaging technology, including novel biomarkers such as PET amyloid ...

  11. Medical Management and Patient Care

    Case management. Legal and financial advice. Workforce development focused on training families and caregivers. Program effectiveness. At one year, the quality of care provided by the program as measured by nationally accepted quality measures for dementia was exceedingly high — 92% compared to a benchmark of 38%.

  12. Living With Semantic Dementia: A Case Study of One Family's Experience

    One less-well-known type of dementia is frontotemporal dementia, which covers a spectrum of conditions that particularly affect behavior and language (Neary et al., 1998).A recent report published by the World Health Organization used figures from the Islington study (Stevens et al., 2002) and gave the rate of frontotemporal dementia within dementia in general as 3% of all cases (Dua et al ...

  13. Clinical Trials for Alzheimer's & Dementia

    Recruiting and retaining diverse trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer's treatments. Individuals with dementia, caregivers and healthy volunteers are all needed to participate in clinical studies focused on Alzheimer's and other dementias.

  14. Anticholinergic Drug Exposure and the Risk of Dementia: A Nested Case

    Findings In this nested case-control study of 58 769 patients with a diagnosis of dementia and 225 574 matched controls, there were statistically significant associations of dementia risk with exposure to anticholinergic antidepressants, antiparkinson drugs, antipsychotic drugs, bladder antimuscarinics, and antiepileptic drugs after adjusting ...

  15. Case studies

    Learn from three scenarios of different people with dementia and their families. Each case study has a vignette, an ecogram, an assessment and a care plan to guide your practice.

  16. 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.

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

    Across eight in-depth, diverse case studies (see Table 2) we identified six over-arching themes regarding how care for long-term conditions is provided and supported in dementia. 1) Balancing support and independence focused on the tension between the value of independence in health management for people with dementia, and the need for ...

  18. The Enigma of Lewy Body Dementia: a Case Report

    We reviewed a case of a 71-year-old patient whose clinical presentation gradually occurred with complex visual hallucinations, atypical extrapyramidal motor symptoms, fluctuating cognitive impairments with delirious episodes, and oscillating syncope. Depressive mood, impaired daily functioning and sensitivity to antipsychotics were also noted.

  19. Phenocopy behavioral variant frontotemporal dementia: A case study

    Abstract. Objective: Behavioral variant frontotemporal dementia (bvFTD) is a neurodegenerative condition characterized by progressive changes in behavior, cognition, and day-to-day functioning. Progression of the disease usually leads to death 3-5 years after diagnosis. However, there are reports of individuals who are initially diagnosed with bvFTD but fail to progress.

  20. Early-Onset Alzheimer's: A Case Study

    Alzheimer's is the most common cause of dementia. It is characterized by a gradual degradation of various physical and cognitive functions&#91;1&#93;. The current fictional case study is about a 42 year old female with early onset Alzheimer's Disease (EOAD) seeking physiotherapy treatment. Evaluation findings include gait abnormalities, decreased balance and decreased cognition. She ...

  21. Dementia Case Study Analysis: Insights And Lessons

    Dementia Case Study Analysis Insights And Lessons — smart'n - NextGen Learning Support for Nurses Case study Explore real-life dementia case study examples to gain valuable insights and lessons on the complexities of this condition.

  22. The Integrated Atlas of Dementia Care in the Australian Capital

    This is a collective case study of the typology and characteristics of care for dementia in the ACT region. Collective case studies in healthcare analyse multiple individual cases or instances that share common characteristics or themes (in this case care organisations, beds and places and professionals providing dementia care in the ACT region).

  23. Case study 3: Joan

    Case Study. Download the Full Case Study for Joan PDF file (58KB) Vignette. Download the Vignette for Joan PDF file (49KB) Name: Joan O'Leary. Gender: Female. ... She has been diagnosed with moderate dementia with Lewy Bodies. The GP phoned social services and you go out to do an assessment. Ecogram. Download the Ecogram for Joan PDF file ...

  24. Diagnosis and Management of Dementia: A Review

    METHODS. We conducted a literature search in PubMed, using the search terms "dementia and (diagnosis or management)" in the title field. The following inclusion criteria were applied: a publication date from November 19, 2013 to June 29, 2019; English language; female or male sex; and "aged, 65 + years" (to exclude studies about less common causes of dementia).

  25. Identifying Mixed Dementia With Lewy Bodies and Alzheimer ...

    We reported imaging findings with complex signs that were corresponded with both dementia with Lewy bodies (DLB) and Alzheimer disease (AD) in the case of a 78-year-old woman. Initially suspected as DLB due to cognitive and movement issues, diagnostic support included the cingulate island sign on 18 …

  26. Healthy living may battle cognitive decline even with signs of dementia

    However the study is "an important step" in understanding the ways people can modify their lives to reduce the risk of Alzheimer's disease and other types of dementia.

  27. Ethical Issues in Dementia Research

    Palliative care research in dementia has to deal with ethical issues involving people at end-of-life research. Proposed research may not receive approval, citing necessary safeguards to the vulnerable older people against invasive studies even when it is least invasive.

  28. New study uncovers why gene is believed to be responsible for ALS and

    Researchers at Case Western Reserve University School of Medicine have discovered why a gene that, when mutated, is a common cause of two debilitating brain diseases: amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD). The study found that the protein generated by this mutant gene, C9ORF72, influences the immune system by regulating the production of Interleukin 17A (IL-17A ...