dementia screening and care - uwyo.edu€¦ · dementia screening and care out of the shadows and...
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DEMENTIA SCREENING AND CARE
Out of the Shadows and Into the Light
Wendy Ostlind, RN, MSN
Louisa Crosby, AGACNP-BC
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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
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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)
9/28/2018 3
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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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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
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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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