Understanding Dementia, the ethics related to dementia and the legal implications

Dean Sherzai, MD, MAS, PhD(c) Director of Memory and Aging Center Director of Research, Neurology Chair of Healthy Aging Committee, DAAS

Story of E
After more than 50 years of marriage her husband died, and she was diagnosed with dementia within 3 years of his death. The legal battles over her estate among her two children, and other problems made her last few years absolutely miserable.

Population Pyramids
2000 2050

Toshiko Kaneda 2008, www.prb.org/Articles/2006

Current Concept
There is a correlation between aging, cognitive decline, and dementia Not synonymous Cognitive decline is predictive of dementia If caught early, much can be done to alter course

Definitions
Normal Cognitive Aging Mild Cognitive Impairment Dementia

Normal Cognitive Aging

Cognitive aging represents changes (usually declines) in adult cognitive function associated with age, not due to specific pathological processes to cause dementia Cognitive aging is not a diagnosis Implies essentially normal daily function, but not necessarily absence of impact on complex function

Transitions

Impending Epidemic
6% of > 65 yrs suffer from dementia Up to 20 % may be experiencing cognitive decline >40% of > 85 suffer from dementia 60 % may experience mild cognitive decline

Impending Epidemic
Cost of dementia: $150-200 billion / yr > 5 million suffer from Dementia By 2050: 16-20 million people By 2050: cost of dementia projected to be > $ 1 trillion

MCI
Cognitive complaint Not normal for age, not demented
Cognitive decline by self-report or informant report and impairment on objective cognitive tasks, or Evidence of decline over time on objective cognitive tasks

Essentially normal function

Dementia
Memory deficit demonstrated objectively on cognitive testing At least one other cognitive deficit such as aphasia, executive function impairment (difficulty with planning, judgment, mental flexibility, abstraction, problemsolving, etc.), agnosia, or apraxia Together, these cognitive deficits must result in impairment in performance of daily activities Gradual onset and continuing cognitive decline Decline from a previous higher level of functioning There must not be any other neurological disease that accounts for the changes

Importance of diagnosing MCI

Increased risk for the development of AD within the next few year Rates of conversion to AD:
MCI: 10-15% per year Normal elderly 1-2% per year

At this stage people can make appropriate decisions for themselves

Types of Dementia
Alzheimers disease Vascular Cognitive impairment, Vascular dementia Mixed Dementia Other neurodegenerative diseases: Lewy Body, FTD, PDD, Huntingtons dementia, etc. Other potential causes: medication, alcohol, depression, anxiety, head trauma, metabolic, infectious, immunologic, endocrine disease, etc.

Alzheimers Disease (AD)

Constitutes ~ 60% of dementias A slowly progressive dementia with early prominent impairment of memory and at least one other area of cognitive ability: Language Visuospatial Executive Attention Calculation

Diagnostic criteria based on NINDS-ADRDA and DSM-IV

Positive PIB PET

Negitive PIB PET

MCI

MCI Non-progressor

Multi-infarct Dementia

Large Lobar Stroke

Frontotemporal Dementia

Evaluation
Informant history Neuropsychological testing such as MMSE (Folstein), Boston naming, CVLT, etc. Activities of daily living (ADLs) Geriatric depression scale Medical history
Medication Comorbidities

Biomarkers
In the early stages of development CSF marker of A beta and tau may be useful at differentiating MCI and normal aging CSF p-tau (phosphorylated at theorinine 231) at baseline, but not total tau level, may correlate with cognitive decline and conversion from MCI to AD Insufficient data to recommend CSF study for diagnosing MCI

Genetics
Considered in young onset suspected familial AD Appropriate genetic counseling ApoE ApoE testing not routinely done in asymptomatic patients No recommendations for any other genetic testing so far

Imaging
SPECT Structural MRI / Volumetrics Functional MRI PET PIB

PET Scan

Treatment

Cholinesterase Inhibitors for AD

FDA Approved Cognex (Parke-Davis) no longer used Aricept (Donepezil) (Pfizer) Exelon (rivastigmine) (Novartis) Reminyl (Galantamine)
(Janssen)

Namenda (memantine)
(Forest)

Potential Disease-Modifying Drugs for AD

What Might Work

Cognitive activity Use it or lose it Physical activity Smoking cessation Mediterranean Diet Vegetarian Diet

Why the focus on MCI?

Study the conversion of MCI to AD Intervene with drugs Predict who is at the greatest risk for developing the disease Differing influences of drugs, and lifestyle changes on healthy aging, MCI and Alzheimers on the brain Diet, exercise, & pharmaceutical studies have shown that early intervention has greater efficacy

Dementia: an ethical framework

A case-based approach to ethical decision A belief about the nature of dementia A belief about quality of life with dementia The importance of promoting the interests both of the person with dementia and of those who care for them The requirement to act in accordance with solidarity Recognising personhood, identity and value 32

Ethical issues for patient

Autonomy competence consent advance directives truth telling confidentiality artificial nutrition and hydration genetic screening
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Ethical issues for patient

behavior control driving wandering research rationing end of life issues euthanasia physician assisted suicide
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Ethics from care giver perspective

Giving untrained care givers drugs to manage Confidentiality between doctors and care givers financial responsibility Doctors awareness of care gives needs Constraints Nature of care in nursing homes Need to respect previous moral beliefs Handling of end of life and decisions about treatment with care giver
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Ethical issues
1. concept of supportive care is particularly helpful in dementia, in that it emphasises the need to support both the person with dementia and their family from the moment of diagnosis. 2.how things are done, so that people with dementia feel valued individuals, will often be far more important than the particular structure or format of services 3.appropriate attitude of professionals and care workers towards families should be that of partners in care, reflecting the solidarity being shown within the family

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Timing & Communication of Dx

1.people should have access to good quality assessment and support from the time they, or their families, become concerned about symptoms that relate to a possible diagnosis of dementia 2.encourage more research to be carried out on the reasons why there is variation between cultures in readiness to come forward for diagnosis, and the role that misinformation and misunderstanding plays in these reasons 3.Professionals responsible for communicating a diagnosis of dementia should actively encourage sharing this information with their family

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Legal Implications
Professional legal advice as soon as possible. State and local bar associations will be able to provide the names of attorneys For certain types of legal advice, the Legal Aid Society, the local Area Agency on Aging, or the Alzheimer's Association will be able to help you find legal assistance at low cost. As soon as possible, talk about writing a living will and assigning a durable power of attorney for health care Determine whether the person is or will be eligible for Medicaid, and investigate long-term care insurance and financing options Locate necessary documents-These include wills and trusts, prior tax returns, health and life insurance policies, pension information, deeds, mortgages, bank accounts, and information on other financial investments. Review the ownership of the person's property. Discuss with 38 attorney the implications of transferring assets.

Legal issues
Patient Consent Power of attorney Advanced decisions Wills

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Consent
What is meant by Consent How Consent is given Withholding information Involving the court of protection When consent is not necessary

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 Dementia and dementia care brings us face to face with some of our greatest social, ethical, and moral issues, and how we respond to these issues is a direct reflection of our humanity and values.

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Comprehensive approach

Empowerment Efforts

Mission To engage with multiple stakeholders in order to promote healthy living and aging through preventive health programs, reduction of health disparities, and creation of sustainable community initiatives, serving as an adaptable model for the national stage. Vision Through community empowerment, citizens will enjoy health and wellbeing regardless of their age.

Date and Time

Thursday, Nov. 14, 2013: 8:00AM 5:45PM Friday, Nov. 15, 2013: 8:00AM 3:30PM

Location
Drayson Center 25040 Stewart Street Loma Linda, CA 92354

Contact
MEMORY and AGING CENTER LOMA LINDA UNIVERSITY Faculty Medical Offices 11370 Anderson St. Suite 2400 Appointments: Messages: Fax: 909-558-2880 909-558-2233 909-558-2237