DEMENTIA SCREENING AND CARE

Out of the Shadows and Into the Light

Wendy Ostlind, RN, MSN

Louisa Crosby, AGACNP-BC

In Wyoming…■ 9,400 people currently living with Alzheimer’s Disease

– Does not include those living with other types of dementia

■ 28,000 unpaid caregivers (3:1 ratio) supporting those living with Alzheimer’s.

– This number indicates a great need for community involvement.

■ By 2025 - 13,000 people will have Alzheimer’s Disease

– 39% increase, the 9th highest in the U.S.

– 70% of all of those living with dementia continue to live in the community (not in institutions)

– One in seven of those lives alone

9/28/2018 http://www.dfwsheridan.org/statistics 2

National Public HealthCrisis

■ Currently – 5.7 million Americans w/

Alzheimer’s

■ Alzheimer’s is 6th leading cause of death in

US

■ Total annual cost of dementia in US in

2013

– $203 billion (not including unpaid

caregivers)Currently – 5.7 million Americans w/

Alzheimer’s

Alzheimer’s is 6th leading cause of

death in US

Total annual cost of dementia in US in

2013 - $203 billion (not including

unpaid caregivers)

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0

10

20

2020 2030 2040 2050

5.8

8.4

11.6

13.8

Alzheimer's Disease Projections

Year

Nu

mb

er

(millio

ns)

Alzheimer’s Association Report 2018 Alzheimer’s disease facts and figures Alzheimer’s Association

https://www.alzheimersanddementia.com/article/S1552-5260(18)30041-4/pdf

National Public Health Crisis…

■ Early diagnosis of AD could have important personal

and financial benefits. A mathematical model

estimates that early and accurate diagnosis could

save up to $7.9 trillion in medical and care costs.

Alzheimer’s Association Report 2018 Alzheimer’s disease facts and figures

Alzheimer’s Association https://www.alzheimersanddementia.com/article/S1552-

5260(18)30041-4/pdf9/28/2018 4

Dementia Screening and Care – Out of the Shadows and Into the Light■ Objectives:

– Identify the barriers to as well as the importance of early diagnosis of cognitive decline.

– Identify Treatment and Management Strategies.

– Visualize a comprehensive continuum of care for those experiencing cognitive decline, as well as their families and care-givers.

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OBJECTIVE 1:Identify the barriers to as well as the

importance of early diagnosis of cognitive

decline.

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What happens when you have Alzheimer’s….

■ https://www.youtube.com/watch?v=8Nna8ZWr720

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Out of the Darkness…Identify the barriers to early diagnosis of cognitive decline.

■ Fear – “dread reflects the kind of life that our care system has created for people who receive the diagnosis [of dementia]” as much or more than fear of disease itself. Powers, A. (2010). Dementia Beyond Drugs.

■ Misunderstanding

■ Hopelessness

■ In video, mentioned “relief….”

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Out of the Darkness…Identify the barriers to early

diagnosis of cognitive decline.

■ Medical Management can only mitigate symptoms at this

time

– Limited beneficial effects

– Side effects (especially the cholinergics)

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Out of the Darkness…Identify the importance of early diagnosis of cognitive decline.

■ Optimize current medical management

■ Relief gained from better understanding

■ Maximize decision-making autonomy

■ Access to services

■ Risk reduction

■ Plan for the future

■ Improve clinical outcomes

■ Avoid or reduce future costs

■ Diagnosis as a human right

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A Screening Tool – a portal to care

■ Screening for dementia can bring the topic into the light…

– We screen for many physiologic parameters: we check weight to get a sense of metabolic functions, blood pressure and pulse for cardiovascular function and respiratory rate and quality for respiratory function. Shouldn’t we be screening for cognitive function?

– Screening can normalize conversations about cognitive decline and act as a portal to care.

– We are proposing the use of the Mini-Cog to screen for cognitive decline.

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The Mini-Cog

■ The Mini-Cog©; is a 3-minute instrument that can increase detection of cognitive impairment in older adults. It can be used effectively after brief training in both healthcare and community settings.

■ It consists of two components, a 3-item recall test for memory and a simply scored clock drawing test.

■ As a screening test, however, it does not substitute for a complete diagnostic workup.

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Mini-Cog Improves Physician Recognition

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***

***

***

CDR Stage

MCI Mild Mod Sev

% C

orr

ect

Borson S et al. Int J Geriatr Psychiatry 2006; 21: 349

0

20

40

60

80

100

0.5 1 2 3

Mini-Cog

Patient’s own

physician

*** p <

.001

The Mini-cog – a Screening Tool that is…

■ Simple – Easy to administer; throws a wide loop

– Not meant to tell you anything ABOUT cognitive decline, but IS meant to pick up cognitive decline EARLY.

– Further testing then can lead to early diagnosis, proactive, patient directed planning.

■ Objective – Subjective assessments often miss cues that indicate there may be a problem

■ Reliable – studies have show that this simple test is as good as more complex assessments at identifying the need for further assessment

– Good with varying levels of education as well as those who speak English as a second language.

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Cognitive Screening and follow up…

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www.actonalz.org/sites/default/files

/documents/Mini-Cog_.pdf

Clock #1

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Clock #2

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Clock #3

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Clock #4

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Clock #5

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Clock #6

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Clock #7

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A word about interpretation pitfalls

■ Do not interpret low scores without context – make note of

significant context

■ Do not skimp on history taking

■ Do not interpret education or ethnicity as impairment

■ Keep in mind that this only a snapshot in time

■ Do not fall prey to confirmatory bias

■ The absence of evidence is not evidence of absence – if

someone has concerns they should be assessed further

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Summary - Identify the barriers to as well as the importance of early diagnosis of cognitive decline.

■ Fear and misunderstanding can be addressed through education

■ The fact that we have no medical treatments to change the course of illness feels hopeless; education about the non-medical support and management is crucial.

■ Caregiver, family and community support are essential to successful disease management

■ A simple, objective, reliable screen brings cognitive health out of the shadows.

■ Subjective evaluation does not identify cognitive decline until late in the course of decline.

■ Early diagnosis defines the prognosis and facilitates planning enabling the person experiencing cognitive decline to be the master of their own fate.

■ It is not the years in your life that count, but the life in those years………………….

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OBJECTIVE 2:Identify Treatment and Management

Strategies

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The WorkupTwo-step approach

1. Determine if MCI or Dementia is present

2. Identify underlying disease(s)

■ History

■ Review of Systems

■ Medical history

■ Social history

■ Family history

■ Physical and neurologic examination

– Cognitive screening

■ Labs

■ Imaging

■ Consultations – geriatrician, neurology?,

palliative/hospice

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General Management Considerations

■ Fixing vs. Supporting

– Partnership: patient, caregiver, clinician

– Goals: mitigating symptoms vs. living with disease at all costs

– Side effects of medications (especially cholinergics)

■ FDA-approved medications may help improve or maintain

cognitive and functional status, for a time….

– Medical management can only mitigate symptoms

– Families/caregivers are helped by treatments that improve

behavioral and psychological symptoms

■ Non-pharm strategies may help compensate for cognitive loss

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General Management Considerations

• De-prescribe as able / refer to BEERs list• Anti-hyperglycemics and hypertensives

• Anticholinergics - benadryl, antispasmodics, etc.

• Anticoagulation for atrial fibrillation vs. WATCHMAN

• Statins

• Vitamins/minerals

• In-appropriate uses of anti-psychotics, hypnotics, narcotics, benzos

• Create plan with care team• Family plan for managing meds

• Med management aids (pill boxes, alarms)

• Create & review medication log

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Non-Pharm Treatment■ External memory aids

– Calendars, lists, whiteboards - keep in the same place

■ Learning habits with procedural memory can help in middle/moderate stages

■ Pictures are easier to remember than spoken/written words

■ Art and Music

■ Aerobic exercise

– Stimulates new neurons in the hippocampus and has positive effects on

cardiovascular health and mood

■ Social and cognitively stimulating activities help improve function

■ Structured environments / routine schedule

■ Annual hearing/vision evaluation

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Strategies for Prevention

• Physical Interventions to Prevent Cognitive Decline

Insufficient evidence to support physical activity interventions in

preventing cognitive decline

Low strength evidence that supports multimodal approach (diet, physical

activity, cognitive training) in preventing cognitive decline

• Vitamins/Minerals

Daily folic acid/B12 - some evidence to improve performance on cog

evals

Vit E - moderate evidence showing no benefit on cognition

Omega 3, MVT, Vit C, Vit D + Ca, beta carotene, folic acid alone, soy,

ginkgo biloba - limited or low strength evidence to support benefit in

preventing cognitive decline

• Pioglitazone

Diabetes patients - protective effect for developing dementia with long

term/high dose exposure9/28/2018 31

Strategies for Treatment

■ FDA Approved

Cholinesterase Inhibitors: Donepezil, Galantamine,

Rivastigmine

NMDA Receptor Antagonist: Memantine

■ Forthcoming medications pending FDA approval

Verubecestat, intepirdine – trials stopped

AADvac1 – still in trial

CSP-1103 – phase 3 planned

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Consider Care Environments

• Home

Home safety evaluation

Plan for the 6 F’s:

Falls

Fire

Finances

Firearms

Freedom

Freeways

Home Health

Private Caregivers

Minimizing environmental risks

Community center access

• Facility

LTC/Memory Care Unit

Palliative or Hospice9/28/2018 33

Home & Personal Safety

■ Refer to OT or PT (Home Health)

Simplify environment, maximize independence & self-care abilities

Fall risk assessment

Sensory / mobility aids

Home safety inspection / modifications

Driving evaluation (PCP/DMV)

Med-Alert Bracelet/Necklace

Fire Plan

“Hospital Kit” at Bedside- Directives, Med List, Allergies, Contact

#’s, Comfort Objects

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Dementia & Hospitalization

■ Reduce Unnecessary Hospitalization– Falls

– UTI / other medical conditions

– Medications / medication mis-management

– Dementia-related behavior

– Hospitalization alternatives

■ In-patient higher rates of: – Agitation, delirium, falls, new incontinence, indwelling urinary

catheters, pressure injuries, functional decline, new feeding tubes

– Significantly less likely to regain preadmission functional status @ 1, 3, or 12 months after discharge

– 3-7 times more likely to be living in a nursing home 3 months after discharge

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Dementia-Related Behavior

■ Studies identify that 50%-90% of persons with dementia will develop “challenging

behaviors”

■ Anxiety is the most prominent in early stages

– 42% become physically aggressive

– 50% have depressive symptoms

■ Prevalence of behavior is directly associated with the approach used by the care

partner

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Common Dementia-Related Behaviors

■ Repeating

■ Depression, withdrawal, failure to thrive

■ Anorexia

■ Anger, Anxiety, Agitation, Aggression

■ Daytime sleeping / night-time wakefulness

■ Wandering, Pacing, Shadowing

■ Apathy

■ Resisting Care

■ Socially inappropriate behaviors (e.g., things that may be ok in private,

but not in public – like disrobing)

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Causes of Challenging Behaviors

■ Physical Health/Medical

Pain

Infection – especially UTI

Depression

Insomnia

■ Environment

Unfamiliar surroundings/environment/caregiver

Over/under stimulation

Poor routine

■ Other

Communication

Unmet needs/boredom

Task-related

Emotional health9/28/2018 38

Reduce Behavioral Symptoms

■ REMEMBER:

– Behavior is communication

– Communication impacts behavior

■ Think like a behavioral analyst

– Detective work, ask:

■ Who (is involved/present)

■ What (exact description, be specific)

■ When (time dependent? only in morning? triggers?)

■ Where (location specific?)

■ Why (what happens right before, right afterwards? what do family think is cause? Has anything changed recently?)

• Strategies to reduce behavioral symptoms

Communication strategies, wellness & social engagement, routine

– Avoid: unrealistic, non-dementia expectations, arguing, correcting, rushing

– Advise: take a deep breath, slow down, step back, simplify, smile, redirect, reassure, try again later

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Health, Wellness & Engagement

Understanding the disease

Partnering with doctors

Telling others about the

diagnosis

Managing symptoms &

coping

Safety

Legal / financial issues

Exercise

Nutrition

Stress reduction

Meaning & purpose

Relationships

Health management

Routine

Encourage lifestyle changes

to reduce disease

symptoms or slow

progression

Engage Caregiver Support

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Care Coordinator: Visit Frequency & Communication

• Schedule regular check-ins / at least annually

• Reminders/transportation

• Caregiver attendance at appointments

• Medication/treatment log

• Educate patient / care partner WHEN to contact

you Change in condition

Assistance with medication management

Pre/Post hospitalization

Change in living environment

New needs9/28/2018 41

Dementia Caregiving Risks/Burnout

– Physical risks:

risk of health problems

– Social risks:

feelings of social isolation, hopelessness

– Psychological risks:

risk of depression and burden

– Financial risks:

financial burden due to lost wages & cost of care

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Common Caregiver Challenges

• 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 future9/28/2018 43

Caregiver Support

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Strong correlation between the health and well-being of a care partner and the quality of care provided.

A care partner with a balanced outlook and good self-care practices can provide care for longer periods of time while maintaining their own health and well-being.

Advance Care Planning

1. Connect patient/MPOA to advance care planning facilitator

2. Discuss/document:

– Code Status:

■ Full code vs. DNR/DNI

■ OOHDNR (Out of Hospital Do Not Resuscitate)

– Life-support:

■ Intubation

■ PEG (percutaneous endoscopic gastrostomy)

■ Tracheostomy

– Living Will, Directive to Physician, MPOA

– Palliative vs. hospice options

■ When is the right time?9/28/2018 45

WyoPOLST (Providers Orders for Life Sustaining Treatment)

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Advance Directive for Dementiahttps://dementia-directive.org/

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Advance Directive for Dementiahttps://dementia-directive.org/

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Advance Directive for Dementiahttps://dementia-directive.org/

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OBJECTIVE 3:Visualize a comprehensive continuum

of care for those experiencing cognitive decline, as well as their

families and care-givers

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Comprehensive Continuum of Care

• Proper Workup and Early Diagnosis

Yearly and as-needed cognitive evaluations

Recognize dynamic and changing needs during disease

progression

• Establish and preserve continuity of care

• Home safety eval/planning vs. need for facility placement

• Caregiver support

• Evidence-based de-prescribing

• Symptom management and comfort oriented care

• Dementia-associated syndrome diagnosis and management

• Advance Care Planning Discussions/ Paperwork

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Continuum of care…….

■ It is not the years in your life that count, but the life in those years………………….

■ https://www.youtube.com/watch?v=rfuWJxTXPso

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Dementia Friendly Wyoming – a model of care

■ Dementia Education for all sectors of the community

■ Tools for supporting care partners in the caring journey – Validation and Positive Approach to Care

■ Education for health care providers, care coordinators, DD Providers and persons working with IDD and Dementia – education on screening and assessment tools

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Dementia Friendly Wyoming – a model of care (continued)…….

■ Friendly Connectors – Provide training to help organizations

identify those who are isolated and at risk of dementia and refer

to GPS center

■ GPS Center (Gathering Positive Solutions) – Planning, support

and connections: Planning for the future and ongoing coaching

for care partners

■ Friendly Visitor Program – Volunteers are matched to persons

who are losing touch with community due to cognitive decline

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DEMENTIA SCREENING AND CARE - OUT OF THE SHADOWS

AND INTO THE LIGHT

-Questions?

Comments?

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