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An A- Z Guide for Working with Patients

and Clients with Memory Loss and Dementia

Objectives

1. Learn how to best support patients/clients and family members throughout the continuum of the disease by accessing ACT on Alzheimer’s tools and resources

2. Identify common health risks associated with caregiving and address the unique needs of family members of those with dementia

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Alzheimer’s Epidemic

• Scope of the problem – 5.2M Americans with AD in 2013

– Growing epidemic expected to impact 13.8M Americans by 2050 and consume 1.1 trillion in healthcare spending

– Almost 2/3 are women (longer life expectancy)

– If disease could be detected earlier incidence would be much higher

• Pre-clinical stage 1-2 decades long

• Some populations at higher risk – Older African Americans (2x as whites)

– Older Hispanics (1.5x as whites)

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Challenges & Opportunities

• AD poorly recognized

– Only 50% of patients receive formal diagnosis

• Millions unaware they have dementia

– Diagnosis often delayed on average by 6+ years after symptom onset

– Significant impairment in function by time it is recognized

• Poor timing: diagnosis frequently at time of crises, hospitalization, failure to thrive, urgent need for institutionalization

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Complex Care Needs

• Unrecognized problem, yet very common • 1 in 9 people 65+ (11%)

• 1 in 3 people 85+ (32%)

• Dementia a hidden driver of excess disability and poor clinical outcomes • Limited insight into symptoms

• Poor compliance with treatment plans of all types

• Providers often unaware of barrier

Sam

• 76 y/o retired teacher (master’s degree) • Daughter c/o short-term memory is poor, patient

acknowledges problem but does not feel it is significant – Repeats himself, multiple phone calls b/c can’t find belongings

• Other family members have noticed changes • Began 2 years ago, getting worse • Hx of hypertension and DM, both fairly well controlled • Wife died unexpectedly last year, lives alone • Conversational presentation seems fairly intact • Oriented x3 but vague awareness of current events

• Referred to Care Coordination – Without Alzheimer’s disease diagnosis

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Cognitive Impairment ID

Practice Tips

• Unfortunately, most of us do not recognize signs and symptoms until they are quite pronounced

– Attribution error: “What do you expect? She is 80 years old.”

– Subjective impressions FAIL to detect dementia in early stages

• Clinical interview

– Let patient answer questions without help

– Remember: Social skills remain intact until late stage dementia

– Easy to be fooled by a sense of humor, reliance on old memories, or quiet/affable demeanor

Practice Tips

• Red flags – Repetition (not normal in 7-10 min conversation)

– Tangential, circumstantial responses

– Losing track of conversation

– Frequently deferring answers to family member

– Over reliance on old information/memories

– Inattentive to appearance

– Unexplained weight loss or “failure to thrive”

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Practice Tips

• Family observations: – ANY instances whatsoever of getting lost while driving,

trouble following a recipe, asking same questions repeatedly, mistakes paying bills

– Take these concerns seriously: by the time family report problems, the symptoms have typically been present for quite a while and are getting worse

• Raise your expectation of older adults: – If my patient was alone on a domestic flight across the

country and the trip required a layover with a gate change, would he/she be able to manage that kind of mental task on his/her own?

• If answer is “not likely” for a patient of any age: RED FLAG

Practice Tips

• Intact older adult should be able to: – Describe at least 2 current events in adequate detail (who,

what, when, why, how)

– Describe events of national significance • 9/11, New Orleans disaster, etc.

– Name or describe the current President and an immediate predecessor

– Describe their own recent medical history and report the conditions for which they take medication

Cognitive Screening

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Screening Measures

• Wide range of options

– Mini-Cog (MC)

– Mini-Mental State Exam (MMSE)

– St. Louis University Mental Status Exam (SLUMS)

– Montreal Cognitive Assessment (MoCA)

• All but MMSE free, in public domain, and online

Screening Administration

• Try not to: – Use the word “test”

• Instead: “We’re going to do something next that requires some concentration.”

– Allow patient to give up prematurely or skip questions

– Deviate from standardized instructions

– Offer multiple choice answers

– Be soft on scoring – Score ranges already padded for normal errors

– Deduct points where necessary – be strict

Mini-Cog

Contents • Verbal Recall (3 points)

• Clock Draw (2 points)

Advantages • Quick (2-3 min)

• Easy

• High yield (executive fx, memory, visuospatial)

Subject asked to recall 3 words Leader, Season, Table

Subject asked to draw clock, set hands to 10 past 11

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DATE_________ ID_________________________AGE____GENDER M F LOCATION ______________________TESTED BY________

MINI-COG ™

1) GET THE PATIENT’S ATTENTION, THEN SAY: “I am going to say three words that I want you to remember now and later. The words are

Banana Sunrise Chair. Please say them for me now.” (Give the patient 3 tries to repeat the words. If unable after 3 tries, go to next item.)

(Fold this page back at the TWO dotted lines BELOW to make a blank space and cover the memory words. Hand the patient a pencil/pen).

2) SAY ALL THE FOLLOWING PHRASES IN THE ORDER INDICATED: “Please draw a clock in the space below. Start by drawing a large

circle.” (When this is done, say) “Put all the numbers in the circle.” (When done, say) “Now set the hands to show 11:10 (10 past 11).” If

subject has not finished clock drawing in 3 minutes, discontinue and ask for recall items.

-------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- --------------

-------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------------------------- -------------

3) SAY: “What were the three words I asked you to remember?”

_ (Score 1 point for each) 3-Item Recall Score

Score the clock (see other side for instructions): Normal clock 2 points Clock Score

Abnormal clock 0 points

Total Score = 3-item recall plus clock score 0, 1, 2, or 3 = clinically important cognitive impairment likely;

4 or 5 = clinically important cognitive impairment unlikely

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CLOCK SCORING

NORMAL CLOCK

A NORMAL CLOCK HAS ALL OF THE FOLLOWING ELEMENTS: All numbers 1-12, each only once, are present in the correct

order and direction (clockwise). Two hands are present, one pointing to 11 and one pointing to 2.

ANY CLOCK MISSING ANY OF THESE ELEMENTS IS SCORED ABNORMAL. REFUSAL TO DRAW A CLOCK IS SCORED

ABNORMAL.

SOME EXAMPLES OF ABNORMAL CLOCKS (THERE ARE MANY OTHER KINDS)

Abnormal Hands Missing Number

................................ ................................ ................................ ................................ ................................ ................................ ................................ .

Mini-CogTM, Copyright S Borson. Reprinted with permission of the author, solely for clinical and teaching use. May not be modified or

used for research without permission of the author (soob@uw.edu). All rights reserved.

Mini-Cog

Pass

• > 4

Fail

• 3 or less

Borson S., Scanlan J, Brush M et al. 2000. The Mini-Cog: A cognitive “vital signs”

measure for dementia screening in multi-lingual elderly. Int J Geriatr Psychiatry, 15,

1021-1027.

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Mini-Cog Research

• Performance unaffected by education or language • Borson Int J Geriatr Psychiatry 2000

• Sensitivity and specificity similar to MMSE (76% vs. 79%; 89% vs. 88%)

• Borson JAGS 2003

• Does not disrupt workflow & increases rate of diagnosis in primary care

• Borson JGIM 2007

• Failure associated with inability to fill pillbox • Anderson et al Am Soc Consult Pharmacists 2008

Mini-Cog: Sam

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http://youtu.be/MXzdtLDRDMo?list=PLGu3PyEblnIKVrTqVj9NzR5f_fcCbTd9T

Sam’s Clock

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Clock #1

Clock #2

Clock #3

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Clock #4

Clock #5

Clock #6

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Clock #7

Clock #8

SLUMS

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SLUMS

High School Diploma Less than 12 yrs education

Pass > 27 > 25

Fail 26 or less 24 or less

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Tariq SH, Tumosa N, Chibnall et al. Comparison of the Saint Louis University mental

status examination and the mini-mental state examination for detecting dementia

and mild neurocognitive disorder--a pilot study. Am J Geriatr Psychiatry. 2006

Nov;14(11):900-10.

MoCA

MoCA

Pass

• > 26

Fail

• 25 or less

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Nasreddine ZS, Phillips NA, Bédirian V, et al. The Montreal Cognitive Assessment

(MoCA©): A Brief Screening Tool For Mild Cognitive Impairment. J Am Geriatr Soc

53:695–699, 2005

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Screening Tool Selection

Montreal Cognitive Assessment (MoCA) • Sensitivity: 90% for MCI, 100% for dementia

• Specificity: 87%

St. Louis University Mental Status (SLUMS) • Sensitivity: 92% for MCI, 100% for dementia

• Specificity: 81%

Mini-Mental Status Exam (MMSE) • Sensitivity: 18% for MCI, 78% for dementia

• Specificity: 100%

Larner et al Int Psychogeriatr 2012; Nasreddine et al J Am Geriatr Soc 2005; Tariq et al Am J Geriatr Psychiatry

2006; Ismail et al Int J Geriatr Psychiatry 2010

Family Questionnaire

www.actonalz.org/pdf/Family-Questionnaire.pdf

Dementia Work-up and Diagnosis for Providers

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Dementia Work-Up

• H&P

• Objective cognitive measurement

• Diagnostics

– Labs

– Imaging ?

– More specific testing (e.g., neuropsychometric)?

• Diagnosis

• Family meeting

Dementia Diagnoses

Alzheimer’s Disease

Vascular Dementia

Lewy Body Dementia

FTD

Alzheimer’s disease: 60-80 % • Includes mixed AD + VD

Lewy Body Dementia: 10-25 % – Parkinson spectrum

Vascular Dementia: 6-10 % – Stroke related

Frontotemporal Dementia: 2-5 % – Personality or language

disturbance

At the time of Diagnosis

• Connect patient/family to community resources – Care for both patient and caregiver

– Examples: Senior linkage line, Alzheimer’s Association

• Discuss follow-up – Want to see patient and family member at regular

intervals (e.g., q 6 months) for proactive care

– Discuss involvement of care coordinator

• Provide written summary of visit 39

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Care and Treatment

• The care for patients with Alzheimer’s has very little to do with pharmacology and much to do with psychosocial interventions

• Involve care coordinator • Connect patient and family to experts in the

community – Example: Alzheimer’s Association – Refer every time, at any stage of disease, and for

every kind of dementia – Stress this is part of their treatment plan and you

expect to hear about their progress at next visit

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Treatment: Medications

• Anticholinergics

– Donepezil, Rivastigmine, Galantamine, Cognex

– Possible side effects: nausea, vomiting, syncope, dizziness, anorexia

• NMDA receptor antagonist

– Memantine

– Possible side effects: tiredness, body aches, dizziness, constipation, headache

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Dementia Care Coordination

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ACT Practice Tool

Identify Care Partner(s)

• Inform the patient that this disease requires a team approach

• Ask the patient to identify team members or care partners – Be task specific (e.g., doctor visits, medication

management)

– Think outside the box / family (e.g., friends, neighbors, religious congregation members, colleagues, community organization volunteers or workers)

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Dementia Care Plan Checklist

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Comprehensive Assessment

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Comprehensive Assessment

• HCH Care Coordination Tool Kit: http://www.health.state.mn.us/healthreform/homes/collaborative/lcdocs/cliniccarecoordtoolkit.pdf

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Comprehensive Assessment

• Primary Care Partner

– Identify language / cultural barriers

– Identify physician(s)

– Assess understanding of patient’s diagnosis

– Consider assessing cognition (if over 65 or signs / symptoms present)

– Assess substance use / misuse

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Comprehensive Assessment

• Primary Care Partner

– Behavioral health, depression

• PHQ9

• CES-D

• GDS

– Caregiver burden (Zarit Burden Interview Short) http://www.uconn-aging.uchc.edu/patientcare/memory/pdfs/zarit_burden_interview.pdf

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Disease Education

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Disease Education: What is AD?

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http://youtu.be/ECbjK4Ra-Ys

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Stages of Alzheimer’s Disease

Disease Education

• ASK the patient / care partner: – What the doctor told them about their memory

loss / diagnosis

– What they know about the disease / questions about the diagnosis / disease

– Biggest concerns; barriers to care / health

• GIVE resources: – Alzheimer’s Association (alz.org; 800-272-3900)

– Senior LinkAge Line (minnesotahelp.info;

800-333-2433)

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Disease Education: Print Materials

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After A Diagnosis

- Partner with doctors - Understand the

disease - Use team approach - Plan ahead - Ask for help - Use community

resources - Role of care

coordinator

Care Plan

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Care Plan Tool Highlights

• Medication Therapy and Management

• Maximize Abilities

• Health, Wellness and Engagement

• Home & Personal Safety

• Legal Planning

• Advance Care Planning

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Medication Therapy & Management

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• Discuss prescribed and OTC medications • simplify medication regimen • reduce / eliminate anticholinergics,

benzodiazepines, hypnotics, narcotics

• Create plan with care team • Family plan for managing meds • Med management aids (pill boxes, alarms) • Create & review medication log

Medication Therapy & Management

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Maximize Abilities

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• Identify / treat conditions that may worsen symptoms or lead to poor outcomes • Diabetes, HTN, sleep dysregulation

• Encourage patient to stop smoking / limit alcohol

• Refer to OT to maximize independence (e.g., simplify environment, maximize independence & self-care abilities)

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Health, Wellness & Engagement

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Encourage lifestyle changes that may reduce disease symptoms or slow progression

- Exercise - Nutrition - Stress reduction - Meaning & purpose - Relationships - Health management - Routine

http://www.alz.org/documents/mndak/alz_living_well_workbook_2011v2_web.pdf

Maximize Abilities: Routine

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Patient Engagement: Research Participation

• Alzheimer’s Association Trial Match

– Free, easy-to-use clinical studies matching service that connects individuals with Alzheimer's, caregivers, healthy volunteers and physicians with current studies.

– http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

• National Institute of Health (NIH)

– http://clinicaltrials.gov

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Home & Personal Safety

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• Educate & develop a plan for 5 F’s: fire, falls, firearms, finances, freeways

• Refer to OT or PT • Fall risk assessment • Sensory / mobility aids • Home safety inspection / modifications • Driving evaluation

• Encourage emergency plans (phone numbers, hospital, fire, etc.)

• Encourage enrollment in Medic Alert® Safe Return®

Safety: Driving Resource Center

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Alzheimer’s Association Driving Center: www.alz.org/care/alzheimers-dementia-and-driving.asp

Legal & Advance Care Planning

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• Encourage patient / care partner to assign health care and durable POA • Refer to elderlaw attorney

• Encourage patient to discuss / document preferences for care • Honoring Choices • MN Healthcare Directive • POLST

• In mid-stage, discuss palliative and hospice options

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Taking Action Workbook

- Understanding the disease

- Partnering with doctors - Telling others about the

diagnosis - Strategies for managing

symptoms & coping - Safety - Legal / financial issues http://www.alz.org/documents/mndak/taking_action_workbook.pdf

Caregiver Support

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Care Plan: Caregiver Support

• Providing support for dementia caregivers is a societal imperative

– 70% of individuals with Alzheimer’s disease live at home

– In 2012, an estimated 15 million unpaid caregivers provided an estimated 17.5 billion hours of unpaid care

– The health care system could not sustain the cost of care without unpaid caregivers

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Dementia Caregivers

• Typically adult children, spouses or other relatives

• Most are women with some college education

• Provide average 20hrs / week of unpaid care

• More time dedicated to care and heavier involvement with ADLs and IADLs than non-dementia caregivers

• Face greater emotional and psychological challenges

Caregiver Support

• There is a strong correlation between the health and well-being of a caregiver and the quality of care that they can provide

• A caregiver with a positive outlook provides better care for a longer period of time

Dementia Caregiving Risks

• Physical risks: caregiving increases the risk of health problems

• Social risks: caregivers frequently suffer from feelings of social isolation

• Psychological risks: caregivers are at increased risk of depression and burden

• Financial risks: caregiving places significant financial burdens on caregivers due to lost wages and cost of care

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Common Caregiver Challenges

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• Lack of disease knowledge / education • Emotional stress, burden • Need for support and respite • Role changes • Challenging family dynamics • Communication difficulties • Neglected health • Putting patient needs first • Challenging patient behaviors • Planning for the future

Arrange Services & Supports

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Arrange Services & Supports

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Alzheimer’s Association 24/7 Helpline | 800.272.3900 www.alz.org/mnnd

Senior Linkage Line

800-333-2433 www.minnesotahelp.info

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Visit Frequency & Communication

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• Schedule regular check-ins • Educate patient / care partner WHEN to

contact you • Changes in condition • Assistance with med management • Before / after hospitalization • Change in living environment • New needs

Visit Frequency & Communication

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• Facilitate physician appointments • Reminders, transportation

• Educate on physician engagement strategies • Encourage care partner(s) to attend medical

appointments • Educate about HIPAA, as needed

• Educate on use of appointment log

Taking Action Workbook

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Questions?

• Download ACT on Alzheimer’s practice tools at: www.ACTonALZ.org/provider-practice-tools

• For more information, email: info@ACTonALZ.org

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Questions

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