Information Resources for Dealing with Dementia: Decision-Making in the GrayInformation Resources for Dealing with Dementia: Decision-Making in the Gray

Steve Bartels, MD, MSSteve Bartels, MD, MSProfessor of Psychiatry & Professor of Psychiatry &

Community and Family MedicineCommunity and Family MedicineDirector, Dartmouth Centers for Health and AgingDirector, Dartmouth Centers for Health and Aging

Cindy Stewart, MLSCindy Stewart, MLSAssociate DirectorAssociate Director

Dartmouth College Biomedical LibrariesDartmouth College Biomedical Libraries

CME Learning ObjectivesCME Learning Objectives

Know why and when to use the demonstrated Know why and when to use the demonstrated information resourcesinformation resources

Know the value of the resources to clinical Know the value of the resources to clinical practicepractice

Be able to effectively access and utilize the Be able to effectively access and utilize the resourcesresources

CME AccreditationCME AccreditationCME AccreditationCME Accreditation

““The Dartmouth-Hitchcock Medical Center is The Dartmouth-Hitchcock Medical Center is accredited by the Accreditation Council for accredited by the Accreditation Council for Continuing Medical Education to provide Continuing Medical Education to provide

continuing medical education for physicians.”continuing medical education for physicians.”

Conflict of InterestConflict of InterestConflict of InterestConflict of Interest

Neither Cindy Stewart nor Steve Bartels has any Neither Cindy Stewart nor Steve Bartels has any financial relationship to those in a position to financial relationship to those in a position to control the content of this presentationcontrol the content of this presentation

This presentation has no commercial supportThis presentation has no commercial support

Objectives: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. PCase of Mrs. P Mrs. P is a 85 year old retired nurse who lives alone and Mrs. P is a 85 year old retired nurse who lives alone and

comes for an evaluation with her daughter.comes for an evaluation with her daughter. She has hypertension, insomnia, and pedal edema. She has She has hypertension, insomnia, and pedal edema. She has

some difficulty walking due to her worsening vision and has some difficulty walking due to her worsening vision and has had some recent falls.had some recent falls.

She complains that she has some difficulties with her She complains that she has some difficulties with her memory, seems to be misplacing things like keys more memory, seems to be misplacing things like keys more frequently, and that she recently forgot about a bridge game frequently, and that she recently forgot about a bridge game that she was expected to attend.that she was expected to attend.

Her daughter remarks that her mother “seems generally more Her daughter remarks that her mother “seems generally more forgetful these days, though she continues to manage daily forgetful these days, though she continues to manage daily activities and decision making.”activities and decision making.”

Does Mrs. P have Dementia?Or Does She Have

Mild Cognitive Impairment (MCI) ?

Does Mrs. P have Dementia?Or Does She Have

Mild Cognitive Impairment (MCI) ?

What’s the Difference?What’s the Difference?

UpToDateUpToDate MDConsultMDConsult

UpToDateUpToDate

MDConsultMDConsult

MDConsult - eJournalsMDConsult - eJournals

MDConsult - eBookMDConsult - eBook

Mild Cognitive Impairment (MCI)Mild Cognitive Impairment (MCI)

Criteria:Criteria: Subjective report of memory problems, preferably confirmed by

another person

Measurable, greater-than-normal memory impairment detected with standard memory assessment tests

Intact general thinking and reasoning skills

Retained ability to perform normal daily activities

12% per year risk of progressing to Alzheimer’s disease with total of 12% per year risk of progressing to Alzheimer’s disease with total of 80% converting in 5-8 years80% converting in 5-8 years

What do you need to know?

Deciding which assessment tool to use…

What do you need to know?

Deciding which assessment tool to use… AGS Geriatrics at Your Fingertips AGS Geriatrics at Your Fingertips Textbooks/JournalsTextbooks/Journals Medical societies/professional Medical societies/professional

organizationsorganizations National Guidelines ClearinghouseNational Guidelines Clearinghouse MedlineMedline

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

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

Textbooks/JournalsTextbooks/Journals

Journals (geriatrics)Journals (geriatrics)

Medical societies/professional organizationsMedical societies/professional organizations

National Guidelines ClearinghouseNational Guidelines Clearinghouse

Summary and Next StepsSummary and Next Steps

Screening with a variety of standard tools recommended for Screening with a variety of standard tools recommended for detection of early dementia…detection of early dementia…

No clear guideline-based recommendations for tests that are No clear guideline-based recommendations for tests that are sensitive and specific for MCIsensitive and specific for MCI

You administer the MMSE to Mrs. P and find that she only 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 recalls 1/3 objects at 5 minutes but has an overall score of 28/30 (within range of “normal” for age and education….28/30 (within range of “normal” for age and education….

Should you be reassured? Should you be reassured?

Medline (PubMed)Medline (PubMed)

Case of Mrs. P: Mild Cognitive Impairment (MCI)

Case of Mrs. P: Mild Cognitive Impairment (MCI)

Criteria: Criteria: Subjective report of memory problems, preferably confirmed

by another person

Measurable, greater-than-normal memory impairment detected with standard memory assessment tests

Intact general thinking and reasoning skills

Retained ability to perform normal daily activities

Question to ask:Question to ask:

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 CollaborationCochrane Collaboration

Does Treatment Make Sense Now?

Not for MCI….

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

Alternative Resource: UpToDateAlternative Resource: UpToDate

A family member asks, “Are alternative therapies effective in treating dementia?”

A family member asks, “Are alternative therapies effective in treating dementia?”

Choline supplementsCholine supplements Estrogen replacementEstrogen replacement Vitamin EVitamin E

TRIP (Turning Research Into Practice) TRIP (Turning Research Into Practice)

Involving the Family and Planning for the Future

Involving the Family and Planning for the Future

Information and support for patients and Information and support for patients and family membersfamily members

Communicating the diagnosis:Communicating the diagnosis:Harmful or helpful?Harmful or helpful?

Medline (PubMed):A targeted search Identifies a helpfulstudy…….

“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: MedlinePlusInformation for the family: MedlinePlus

MedlinePlus Information onDementia for Health CareConsumers andFamilies

NIH Senior Health Information ResourcesNIH Senior Health Information Resources

Information for Family Caregivers

Health Education Center (HEC)Health Education Center (HEC)

Planning BEFORE Advanced Alzheimer’s Develops and

Advance Directives

Planning BEFORE Advanced Alzheimer’s Develops and

Advance Directives

DefinitionsDefinitions Advance directives documentsAdvance directives documents

National Institute on Aging Web PageNational Institute on Aging Web Page

DHMC – Office of Care ManagementDHMC – Office of Care Management

Foundation for Healthy CommunitiesFoundation for Healthy Communities

Two Years Later: The Case of Mrs. PTwo Years Later: The Case of Mrs. P

Two years later Mrs. P has turned over management of her Two years later Mrs. P has turned over management of her finances to her daughter because she found that she was finances to her daughter because she found that she was having difficulty keeping her bills straight.having difficulty keeping her bills straight.

She reports that she has trouble keeping track of where she is She reports that she has trouble keeping track of where she is supposed to be on a given day.supposed to be on a given day.

She can no longer recall phone numbers of family members.She can no longer recall phone numbers of family members. She denies difficulty bathing but her daughter says that she She denies difficulty bathing but her daughter says that she

“forgets to do it.”“forgets to do it.” Her daughter is concerned that she is not taking her Her daughter is concerned that she is not taking her

medications as prescribed due to confusion.medications as prescribed due to confusion. Mrs P. completes a MMSE and now has a score of 19/30.Mrs P. completes a MMSE and now has a score of 19/30.

Alzheimer’s Disease Diagnostic CriteriaAlzheimer’s Disease Diagnostic Criteria 1. 1. Memory impairmentMemory impairment (impaired ability to learn new (impaired ability to learn new

information or to recall previously learned information) andinformation or to recall previously learned information) and 2. One or more of the following cognitive disturbances:2. One or more of the following cognitive disturbances:

AphasiaAphasia (language disturbance) (language disturbance) ApraxiaApraxia (impaired ability to carry out motor activities despite intact (impaired ability to carry out motor activities despite intact

motor function)motor function) AgnosiaAgnosia (failure to recognize or identify objects despite intact sensory (failure to recognize or identify objects despite intact sensory

function)function) Disturbance in executive functioningDisturbance in executive functioning (i.e., planning, organizing, (i.e., planning, organizing,

sequencing, abstracting)sequencing, abstracting) Associated with significant impairment and decline in Associated with significant impairment and decline in

functioningfunctioning Not due to other CNS disordersNot due to other CNS disorders

Information Resources for CaregiversInformation Resources for Caregivers

National:National: Alzheimer’s AssociationAlzheimer’s Association National Family Caregivers’ AssociationNational Family Caregivers’ Association Rosalynn Carter Institute for CaregivingRosalynn Carter Institute for Caregiving AARPAARP

LocalLocal DHMCDHMC ServiceLinkServiceLink

http://www.alz.org

Alzheimer’sAssociationWebpage

National Family Caregivers’ AssociationNational Family Caregivers’ Association

Rosalynn Carter Institute for CaregivingRosalynn Carter Institute for Caregiving

DHMC – Office of Care ManagementDHMC – Office of Care Management

Local Services - ServiceLinkLocal Services - ServiceLink

Case of Mrs. PCase of Mrs. P One year later, Mrs. P’s daughter reports that Mrs. P. One year later, Mrs. P’s daughter reports that Mrs. P.

now has a home health aide to assist her with getting now has a home health aide to assist her with getting out of bed, dressing, bathing, cooking and cleaning out of bed, dressing, bathing, cooking and cleaning -- things she can no longer manage on her own.-- things she can no longer manage on her own.

She has is episodically incontinent and has been She has is episodically incontinent and has been found wandering outside of her house.found wandering outside of her house.

Her daughter is concerned that her behaviors are Her daughter is concerned that her behaviors are now beyond the abilities of the home health aide to now beyond the abilities of the home health aide to manage, and is considering a nursing home manage, and is considering a nursing home placementplacement

Resources for EvaluatingLong-termCare Options:

ALFs and Nursing Homes

http://www.medicare.gov/NHCompare

Nursing HomeCompare

Local Services - ServiceLinkLocal Services - ServiceLink

Case of Mrs. PCase of Mrs. P Another year later, Mrs. P is in a nursing home and Another year later, Mrs. P is in a nursing home and

now has advanced Alzheimer’s Dementia. now has advanced Alzheimer’s Dementia. She is losing weight, has difficulty swallowing, no She is losing weight, has difficulty swallowing, no

longer walks, is non-verbal, and no longer longer walks, is non-verbal, and no longer recognizes family members.recognizes family members.

Placement of a feeding tube would prolong her life.Placement of a feeding tube would prolong her life. However, her advance directive clearly states that However, her advance directive clearly states that

she would not want artificial nutrition or other she would not want artificial nutrition or other extraordinary means of keeping alive in the event of extraordinary means of keeping alive in the event of advanced dementia.advanced dementia.

Palliative and End-Of-Life Care Information Resources

Palliative and End-Of-Life Care Information Resources

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

Palliative Care OrganizationsPalliative Care Organizations

National Hospital and Palliative Care National Hospital and Palliative Care OrganizationOrganization

New Hampshire Hospice and Palliative Care New Hampshire Hospice and Palliative Care OrganizationOrganization

DyingWell.orgDyingWell.org

DHMC Palliative Care ProgramDHMC Palliative Care Program

Ethics and DementiaEthics and Dementia

DiagnosisDiagnosis Driving privilegesDriving privileges Respecting choiceRespecting choice Behavior controlBehavior control Death & dyingDeath & dying Quality of life and Quality of life and

treatment decisionstreatment decisions

SummarySummary

MCI and Dementia are complex to diagnose and MCI and Dementia are complex to diagnose and treat, but there are resources available to guide treat, but there are resources available to guide the provider, patient, and family. the provider, patient, and family.

Optimal approaches should make use of available Optimal approaches should make use of available resources to engage in advance care planning, resources to engage in advance care planning, family caregiver support, the stage of the family caregiver support, the stage of the disorder, and the preferences and values of the disorder, and the preferences and values of the individual and familyindividual and family