Dementia: A Comprehensive Update
June 10, 2017
Transactional Capacities, Ethics, and Palliation in Dementia
Bruce H. Price, MD
Chief, McLean Hospital Department of Neurology
Associate in Neurology, Massachusetts General Hospital
Associate Professor of Neurology, Harvard Medical School
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•Dementia is a syndrome, an umbrella term which
encompasses numerous diseases and disorders that cause
cognitive and functional decline
•Dementia is a terminal disorder
•The monetary costs are more expensive than heart disease or
cancer, approximating $259 billion per year in the U.S.
•As a neurologist or psychiatrist, you don’t think that you are
going to become a family doctor. But with neurodegenerative
diseases, we take care of patients from the beginning of their
disease throughout its course. And we take care of their
family members as well
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In 2014, the AAN and APA assumed joint stewardship of dementia
management measurements. They all need improvement.
Disclosure of Diagnosis
Education and Support of Caregivers
Functional Assessment
Screening for
- Behavioral and Psychiatric Symptoms
- Safety Concerns
- Driving
- Pain
• Psychopharmacologic Treatment of Dementia
• Follow-up Care
• Advance Care Planning, Palliation
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HARRIETT “COTTON” ELIZABETH
KINLOCH HEIMBURGER PRICE
“A beautiful young person is
an accident of nature.
A beautiful old person is a
work of art.”
-William Shakespeare
1922 - 2010
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Factors Which May Obscure Early Recognition
of AD:
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Intact social graces
Masking, compensatory behavior
Intact personality structure
Overestimation of cognitive skills
Preservation of most ADLs
Normal aging patterns
Denial ,fear, therapeutic nihilism by families and
physicians
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Behavioral & Cognitive Correlates in MCI
• Impaired awareness
• Depression (20%), apathy (15%), irritability (15%)
• Diminished complex decision-making capacities –
including medical and financial decisions
• Increased risk of motor vehicle accidents
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Complex decision making capacities that may be
affected by early AD or MCI
The ability to:
Respond to emergencies
Pilot or drive transportation vehicles
Make medical decisions
Manage complex medical treatments
Stand trial
Testify as a witness
Qualify as a juror
Handle firearms
Fulfill social and occupational roles
Engage in intimate, sexual relations
Resist undue influence over personal decisions
Execute a will and last testament
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• Adequate data is lacking regarding the effects of early
neuropsychiatric changes on domains of functioning
such as medical decision making, consenting to
medical research studies, engaging in legal contracts,
making financial decisions, voting, operating a motor
vehicle, resisting undue influence and composing a
last will and testament.
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• Family members, legal authorities and health care
providers may erroneously conclude that intact
judgment is present from adequate performance on
tasks of orientation, memory, and calculations
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• Medical and legal frameworks for evaluating
and determining competence to perform these
life activities vary greatly amongst specific
tasks and differ from state to state with few
agreed upon medical or legal guidelines.
• No reliable instruments are available to
measure susceptibility to undue influence and
coercion.
• This results in a wide spectrum of accepted and
common medical and legal practices which may
yield widely varying outcomes, often to the
detriment of the patient and their family.
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The Center for Law, Brain and Behavior
at Massachusetts General Hospital
Judith Edersheim, JD, MD
Bruce H. Price, MD
Translating Neuroscience into Action
Visit our website: www.clbb.org
Follow us: twitter.com/mghclbb
View past events: vimeo.com/clbb
The Brain Matters. Science Matters. Justice Matters.
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CLBB Working Group on Fraud and Undue
Influence in Cognitively Impaired Older Adults
Bruce H. Price
Neurologist
McLean/Massachusetts General Hospital
Judith Edersheim
Lawyer, Forensic Psychiatrist Massachusetts General Hospital
Brad Dickerson
Neurologist
Massachusetts General Hospital
Jennifer Moye
Neuropsychologist
Massachusetts General Hospital
Francis Shen
Professor
University of Minnesota Law School
Margaret O’Connor
Neuropsychologist
Beth Israel Deaconess Medical Center
Ryan Darby
Neurologist
Beth Israel Deaconess Medical Center
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The Functional Neuroanatomy of Decision-Making
Michael H. Rosenbloom, M.D.
Jeremy D. Schmahmann, M.D.
Bruce H. Price, M.D.
The Journal of Neuropsychiatry and Clinical
Neurosciences 2012; 24:266–277
Preserving Brain Health and Protecting your Legacy
Bruce H. Price, MD
Judith Edersheim, JD, MD
Naples Yacht Club, Naples, Florida, April 2013
Protecting Our Parents: Can Science Help?
Bruce H. Price, MD
Ekaterina Pivovarova, Ph.D.
Huffington Post, February 21, 2014
Protecting Your Clients and Our Parents: Can Brain Science Help?
Bruce H. Price, MD
Fidelity PMI Event, July 2015
Protecting The Health and Finances of the Elderly with Early Alzheimer’s Disease and Mild
Cognitive Impairment
Judith Edersheim, JD, MD
Evan Murray, MD
Jaya L. Padmanabhan, MD
Bruce H. Price. MD
American Journal of Psychiatry and Law
J Am Acad Psychiatry Law 45:81-91, 2017
What Patients with Behavioral-Variant Frontotemporal Dementia can Teach us About Moral
Responsibility
Ryan Darby, MD
Judith Edersheim, JD, MD
Bruce H. Price, MD
American Journal of Bioethics Neuroscience, 2016
AJOB Neuroscience 2016: 7(4): 193-201
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Definitions
Elder Fraud is an act targeting adults 60 years and older in
which attempts are made to deceive with promises of goods,
services, or financial benefits that do not exist, were never
intended to be provided, or were misrepresented.
Undue Influence is a legal term for excessive or inappropriate
manipulation of which there are 3 main types:
•Deception
•Duress
•Unconscionable or excessive demands
Everyone, regardless of age, health, education, or experience
is susceptible to one or more of these influences
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Vulnerabilities to Fraud and Undue Influence
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Female
50 Years or over
Widowed (inherited assets)
Retired (accumulated savings)
Owns their own home (equity)
Lonely/isolated/limited access to support
Dependent on others
Anxious, depressed, and/or on psychiatric medications
Diminished cognitive capacity
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Who are the perpetrators?
They may be anyone!
50% Known to the Victim
50% Not Well Known to the Victim
Family Members
Friends
Caregivers
Advisors
Accountants
Lawyers
Landlords
Phony charities/solicitations
Home repairs
Video gambling, casinos, online games
Dating scams
Grandparent/kidnapped grandchildren scams
Police hoaxes
Bank teller swindles
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Common strategies include
Threats
Harassment
Intentional deceit
Isolation from people who would protect them
“I become their friend and make them think that I’m an expert. Once they
buy into that, they’re mine”.
African-Americans may be 3x more likely to be targeted
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Increased Financial Complexities at 65 and Beyond
• Fixed income
• Retirement
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More funds needed for daily
expenses
• Asset Protection (Home, Savings,
Investments)
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Unpaid debts, loans, supporting
other relatives
• Charitable Planning
• Long Term Health Care
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More needs of family members
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Relocation/downsizing
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Refinancing mortgages
• Medicare Planning/Declining
Health
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Estate Planning
• How much longer will I live?
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Business Succession
• Will my savings last?
• Assisted Living/Nursing Facilities
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Facts to Remember
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10,000,000 Americans have Cognitive Impairment or Dementia
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50% of the U.S. population in their 80’s suffers from significant cognitive impairment
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2,000,000 new cases of dementia are diagnosed in the U.S. every year
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10,000 Americans turn 65 every day
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Over the next 50 years, $41 trillion will be passed down from the estates of the
elderly in the U.S.
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Many elders do not obtain necessary medical and social support due to lack of known
resources, diminished cognitive capacities, embarrassment, fear of retaliation, not
knowing where to turn, and outright refusal of care.
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Nevertheless, our existing legal protections are greater for 50 year olds than 90 year
olds. In contrast, all 50 states have statues to report
- child abuse
- abuse of individuals with intellectual difficulties
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It is important to plan for the possibility of cognitive impairment
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Patient’s Resistance in Planning for Cognitive Decline
• Lack of meta-cognition
My memory is fine.
• Desire for control
I want to keep driving.
• Over-optimism
I won’t develop dementia.
• Procrastination
I’ll do it next month.
• Aversion to complexity
A living revocable trust?
• Planning for cognitive decline
Costly and Frightening.
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The Health Care Provider’s Dilemma
Most internists, neurologists, psychiatrists, and neuropsychologists do
not understand undue influence, its assessment, or how to help prevent
future exploitation.
There are currently no such instruments to assess undue influence, in
particular with domain specific measures
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Planning for cognitive decline
• Durable power of attorney
• Living revocable trust
• Living will
• Healthcare proxy
• Will
• Where are these documents stored?
• Planning should be the default
• Should it be a requirement?
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