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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% 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: , ,  NMDA Receptor Antagonist:

■ Forthcoming medications pending FDA approval  Verubecestat, – 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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