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 ■ Currently –Alzheimer's5.7 million Disease Projections Americans w/ National Alzheimer’s 20 ■ Alzheimer’s is 6th leading cause of death in Public Health US Crisis ■ Total annual cost of dementia in US in13.8 2013 11.6
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Total annual cost of dementia in US in 2013 - $203 billion (not including 0 unpaid caregivers) 2020 2030 2040 2050 Year
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 9/28/2018 3 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- 9/28/2018 5260(18)30041-4/pdf 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.
9/28/2018 5 OBJECTIVE 1: Identify the barriers to as well as the importance of early diagnosis of cognitive decline.
9/28/2018 6 What happens when you have Alzheimer’s….
■ https://www.youtube.com/watch?v=8Nna8ZWr720
9/28/2018 7 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….”
9/28/2018 8 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)
9/28/2018 9 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
9/28/2018 10 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.
9/28/2018 11 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.
9/28/2018 12 Mini-Cog Improves Physician Recognition
*** 100 ***
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40 Patient’s own
% Correct % physician 20 *** p < 0 .001 CDR Stage 0.5 1 2 3 MCI Mild Mod Sev
Borson S et al. Int J Geriatr Psychiatry 2006; 21: 349 9/28/2018 13 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.
9/28/2018 14 Cognitive Screening and follow up…
9/28/2018 15 www.actonalz.org/sites/default/files /documents/Mini-Cog_.pdf
9/28/2018 16 Clock #1
9/28/2018 17 Clock #2
9/28/2018 18 Clock #3
9/28/2018 19 Clock #4
9/28/2018 20 Clock #5
9/28/2018 21 Clock #6
9/28/2018 22 Clock #7
9/28/2018 23 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
9/28/2018 24 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………………….
9/28/2018 25 OBJECTIVE 2: Identify Treatment and Management Strategies
9/28/2018 26 Two-step approach The Workup 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
9/28/2018 27 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
9/28/2018 28 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
9/28/2018 29 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
9/28/2018 30 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 exposure 9/28/2018 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
9/28/2018 32 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 Hospice 9/28/2018 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
9/28/2018 34 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
9/28/2018 35 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
9/28/2018 36 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)
9/28/2018 37 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 health 9/28/2018 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 9/28/2018 39 Health, Wellness & Engagement
Encourage lifestyle changes to reduce disease symptoms or slow Engage Caregiver Support progression Exercise Understanding the disease Nutrition Partnering with doctors Stress reduction Telling others about the Meaning & purpose diagnosis Relationships Managing symptoms & Health management coping Routine Safety Legal / financial issues
9/28/2018 40 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
9/28/2018 New needs 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
9/28/2018 42 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 future 9/28/2018 43 Strong correlation between the health and well-being of a care partner and the quality of care provided. Caregiver Support 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.
9/28/2018 44 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)
9/28/2018 46 Advance Directive for Dementia https://dementia-directive.org/
9/28/2018 47 Advance Directive for Dementia https://dementia-directive.org/
9/28/2018 48 Advance Directive for Dementia https://dementia-directive.org/
9/28/2018 49 OBJECTIVE 3: Visualize a comprehensive continuum of care for those experiencing cognitive decline, as well as their families and care-givers
9/28/2018 50 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
9/28/2018 51 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
9/28/2018 52 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
9/28/2018 53 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
9/28/2018 54 DEMENTIA SCREENING AND CARE - OUT OF THE SHADOWS AND INTO THE LIGHT - Questions? Comments?
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