Information Resources for Dealing with Dementia: Decision-Making in the Gray Steve Bartels, MD, MS Professor of Psychiatry & Community and Family Medicine Director, Dartmouth Centers for Health and Aging Cindy Stewart, MLS Associate Director Dartmouth College Biomedical Libraries

CME Learning Objectives n Know why and when to use the demonstrated information resources n Know the value of the resources to clinical practice n Be able to effectively access and utilize the resources

CME Accreditation “The Dartmouth-Hitchcock Medical Center is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.”

Conflict of Interest n Neither Cindy Stewart nor Steve Bartels has any financial relationship to those in a position to control the content of this presentation n This presentation has no commercial support

Objectives: Use a case-based approach to introduce web-based information resources specific to diagnosing and managing dementia. Become familiar with information resources to use in making the best decisions at each stage of dementia. Use a case-based approach to introduce web-based information resources specific to diagnosing and managing dementia. Become familiar with information resources to use in making the best decisions at each stage of dementia.

Case of Mrs. P n Mrs. P is a 85 year old retired nurse who lives alone and comes for an evaluation with her daughter. n She has hypertension, insomnia, and pedal edema. She has some difficulty walking due to her worsening vision and has had some recent falls. n She complains that she has some difficulties with her memory, seems to be misplacing things like keys more frequently, and that she recently forgot about a bridge game that she was expected to attend. n Her daughter remarks that her mother “seems generally more forgetful these days, though she continues to manage daily activities and decision making.”

Does Mrs. P have Dementia? Or Does She Have Mild Cognitive Impairment (MCI) ? What’s the Difference? n UpToDate n MDConsult

UpToDate

MDConsult

MDConsult - eJournals

MDConsult - eBook

Mild Cognitive Impairment (MCI) Criteria: Criteria: F F Subjective report of memory problems, preferably confirmed by another person F F Measurable, greater-than-normal memory impairment detected with standard memory assessment tests F F Intact general thinking and reasoning skills   Retained ability to perform normal daily activities n 12% per year risk of progressing to Alzheimer’s disease with total of 80% converting in 5-8 years

What do you need to know? Deciding which assessment tool to use… n AGS Geriatrics at Your Fingertips n Textbooks/Journals n Medical societies/professional organizations n National Guidelines Clearinghouse n Medline

AGS Geriatrics at Your Fingertips (available in hardcopy and free online)

Textbooks/Journals

Journals (geriatrics)

Medical societies/professional organizations

National Guidelines Clearinghouse

Summary and Next Steps n Screening with a variety of standard tools recommended for detection of early dementia… n No clear guideline-based recommendations for tests that are sensitive and specific for MCI n You administer the MMSE to Mrs. P and find that she only recalls 1/3 objects at 5 minutes but has an overall score of 28/30 (within range of “normal” for age and education…. n Should you be reassured?

Medline (PubMed)

Case of Mrs. P: Mild Cognitive Impairment (MCI) Criteria: Criteria: F F Subjective report of memory problems, preferably confirmed by another person F F Measurable, greater-than-normal memory impairment detected with standard memory assessment tests F F Intact general thinking and reasoning skills F F Retained ability to perform normal daily activities

Question to ask: F F Given the likely diagnosis of MCI, is there evidence that supports that treatment with cholinesterase inhibitors (often recommended for Alzheimer’s Disease) make sense for MCI?

Cochrane Collaboration

Does Treatment Make Sense Now?

Not for MCI….

But how about later if Mrs. P progresses to Alzheimer’s Disease?

Alternative Resource: UpToDate

A family member asks, “Are alternative therapies effective in treating dementia?” n Choline supplements n Estrogen replacement n Vitamin E

TRIP (Turning Research Into Practice)

Involving the Family and Planning for the Future n Information and support for patients and family members n Communicating the diagnosis: Harmful or helpful?

Medline (PubMed): A targeted search Identifies a helpful study……. “Disclosure of a dementia diagnosis does not prompt a catastrophic reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed.”

Information for the family: MedlinePlus

MedlinePlus Information on Dementia for Health Care Consumers and Families

NIH Senior Health Information Resources

Information for Family Caregivers

Health Education Center (HEC)

Planning BEFORE Advanced Alzheimer’s Develops and Advance Directives n Definitions n Advance directives documents

National Institute on Aging Web Page

DHMC – Office of Care Management

Foundation for Healthy Communities

Two Years Later: The Case of Mrs. P n Two years later Mrs. P has turned over management of her finances to her daughter because she found that she was having difficulty keeping her bills straight. n She reports that she has trouble keeping track of where she is supposed to be on a given day. n She can no longer recall phone numbers of family members. n She denies difficulty bathing but her daughter says that she “forgets to do it.” n Her daughter is concerned that she is not taking her medications as prescribed due to confusion. n Mrs P. completes a MMSE and now has a score of 19/30.

Alzheimer’s Disease Diagnostic Criteria n 1. Memory impairment (impaired ability to learn new information or to recall previously learned information) and n 2. One or more of the following cognitive disturbances: u Aphasia (language disturbance) u Apraxia (impaired ability to carry out motor activities despite intact motor function) u Agnosia (failure to recognize or identify objects despite intact sensory function) u Disturbance in executive functioning (i.e., planning, organizing, sequencing, abstracting) n Associated with significant impairment and decline in functioning n Not due to other CNS disorders

Information Resources for Caregivers n National: u Alzheimer’s Association u National Family Caregivers’ Association u Rosalynn Carter Institute for Caregiving u AARP n Local u DHMC u ServiceLink

Alzheimer’s Association Webpage

National Family Caregivers’ Association

Rosalynn Carter Institute for Caregiving

DHMC – Office of Care Management

Local Services - ServiceLink

Case of Mrs. P n One year later, Mrs. P’s daughter reports that Mrs. P. now has a home health aide to assist her with getting out of bed, dressing, bathing, cooking and cleaning - - things she can no longer manage on her own. n She has is episodically incontinent and has been found wandering outside of her house. n Her daughter is concerned that her behaviors are now beyond the abilities of the home health aide to manage, and is considering a nursing home placement

Resources for Evaluating Long-term Care Options: ALFs and Nursing Homes

ov/NHCompare Nursing Home Compare

Local Services - ServiceLink

Case of Mrs. P n Another year later, Mrs. P is in a nursing home and now has advanced Alzheimer’s Dementia. n She is losing weight, has difficulty swallowing, no longer walks, is non-verbal, and no longer recognizes family members. n Placement of a feeding tube would prolong her life. n However, her advance directive clearly states that she would not want artificial nutrition or other extraordinary means of keeping alive in the event of advanced dementia.

Palliative and End-Of-Life Care Information Resources

Biomedical Libraries Research Guide: Palliative and End-of-Life Care

Palliative Care Organizations n National Hospital and Palliative Care Organization n New Hampshire Hospice and Palliative Care Organization n DyingWell.org

DHMC Palliative Care Program

Ethics and Dementia n Diagnosis n Driving privileges n Respecting choice n Behavior control n Death & dying n Quality of life and treatment decisions

Summary n MCI and Dementia are complex to diagnose and treat, but there are resources available to guide the provider, patient, and family. n Optimal approaches should make use of available resources to engage in advance care planning, family caregiver support, the stage of the disorder, and the preferences and values of the individual and family