Care Planning in Early Alzheimer’s Dementia...(family or friend) – “there’s nothing we can do” vs “things we can do to improve your quality of life” Care Planning in

Care Planning in Early Alzheimer’s Dementia

Piruz Huda ARNP Karen Clay MSW LICSWPsychiatric Nurse Practitioner UW Memory & Brain Wellness Centerhuda@huda‐np.com [email protected]

Disclosures

• Piruz Huda: Aegis Living and HorizonHouse

• Karen Clay: none

Care Planning in Early AD (Huda & Clay), NW GWEC Winter 2021 1

Learning Objectives/Overview

• Uniqueness of ACP in dementia

• Differing priorities of the Provider and the Patient?

• Identify important safety and care issues facing people with dementia

• Discuss care resources for assisting people with dementia and their families in meeting current and future care needs

• Incorporating care planning into future clinic visits

Traditional ACP and Dementia Traditional ACP

• Disease/situation involves brief period of incapacity with imminently terminal event

• Whether to use life‐sustaining treatments

Dementia ACP

• Gradual decline in health and cognition during which decision need to be made about MANY potential interventions, not just those at end of life.

• Capacity to make decisions may be lost by the time disease is acknowledged.

Terri et al. Dementia specific ACP, JAGS, Nov 2020


Risk Focus Health Professionals:

Physical Risks

• Medication

• Nutrition

• Cooking

• Falls, Safety

• Hygiene

PWD: Person living with Dementia

Day to Day Impact of Disease

• Loss of independence (driving, finances, working)

• Social isolation

• Mental Health

• Being a burden

• Stigma Dickins, Goeman, O’Keefe, Iliffe, Pond. Understanding the Conceptualization of Risk in the Context of Community Dementia Care

Challenges facing PWD

• Reactions of medical providers, friends, family were more damaging to well being than the disease itself

• Sense of Stigma

• Worried about control and autonomy

• Desire to advocate and improve QOL for self and others

Peter Reed, PhD, MPH, Jennifer Carson, PhD, and Zebbedia Gibb, PhD, “Transcending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being, AMA Journal of Ethics July 2017, Volume 19, Number 7: 693-703


Psychoeducation for health behavior change

• Psychoeducation (PE) is defined as an intervention with systematic, structured, and didactic knowledge transfer for an illness and its treatment, integrating emotional and motivational aspects to enable patients to cope with the illness and to improve its treatment adherence and efficacy

Progress in Brain Research, Vol 235, 2017, pg 239‐264

• ACP is a health behavior (such as smoking, exercise, substance abuse), with engagement dependent upon knowledge, beliefs and attitudes.

Sussman et al. Dementia (London), Dec 8, 2020

PWD: Principles for a Dignified Dx

• Talk to me directly, the person with dementia

• Tell the truth

• Test early, explain what/why

• Take my concerns seriously, regardless of age

• Coordinate with other care providers

• Give me tools for living with the disease

• Work with me on a plan for healthy living

• Recognize that I am an individual and my experience is unique

• Advocate not just for medical care, but for my QOL.

Alz Assoc: Living w Alz, Taking Action Workbook


Quality of Life

It’s possible to ‘live well’ with dementia (many people with dementia rate QOL as good or excellent, despite the challenges)Logsdon, R. G, McCurry, S.M., Teri, L. Evidence-Based Interventions to Improve Quality of Life for Individuals with Dementia. Alzheimer’s Care Today. 2007; 8(4): 309-318.

Whatever the dementia stage…

• When care aligns with patients’ values and preferences: that is higher quality care.

• Key to getting there: better communication.

J Pain Symptom Management. 2015;49(4):773‐781


The Dignity of Risk

• High value on independence and autonomy

– ¾ of older Americans prefer to remain in their current residence ‐ Binette, Vasold

“Our society takes protections of personal freedom very seriously. There is a good and bad side to it.”Dr. Michael Persenaire, UW Memory and Brain Wellness Center

Binette, Vasold www.aarp.org/research/topics/community/info-2018/2018-home-community-preference.html

Patients with Early Dementia

The most important form is the DPOA ‐‐‐ set proxy decision‐makers.


DPOA – Health and Finances• Early in dementia: So important for patients to

designate, in a legal form their proxies. With alternates

• If form completed decades ago, the designated proxy may no longer be able to serve

• Encouraging Conversations about Values with DPOA

• Willing to follow your preferences

Care Planning in Early Dementia

Common Concerns of people with dementia:

• Loss of independence (driving, finances, working)

• Social isolation

• Mental Health

• Being a burden

Explore individual patient’s concerns and values


Planning for Care NeedsIn home, Day Health, Memory Care at ALF or Adult Family Home

– Private pay

– Private long term care insurance

– Medicaid Transformation Programs (TSOA & MAC)

– DSHS long term care programs (COPES, CFC)

(LNOK can no longer sign for DSHS services in WA State!)

Guides / Navigators

• Area Agencies on Aging / Community Living

Connections (in WA State)

• Alzheimer’s Association

• Dementia Road Map


Area Agencies on Aging

• Info and Referral (transportation, food benefits, etc) • Care planning:

– financial– legal– care options

• Benefits Assistance (DSHS, TSAO, COPES)• Health and Wellness Programs • Care Giver Support Network (Respite Options, Support

Groups, and Counselor referrals, Dementia Coaching)


• 24/7 Helpline: (800)272‐3900

• Website: www.alz.org

• “I have Alzheimer’s” center on website

• “Newly Diagnosed Packet” (download or order)

• Virtual Programs / Webinars / support groups


Dementia Road Map

Dementia Safety Issues

• Driving

• Medication Management

• Weapons/Firearms

• Home Safety

• Falls

• “Wandering”


Negotiating Risk

• Discuss in detail

• Explore values

• Empowerment

• Collaborative Agreement

• Monitoring Results

Power, G. Allen. Dementia Beyond Disease: Enhancing Well-Being. Baltimore: Health Professions Press, 2014.

Driving and Dementia

• Dangerous for all of us

• Driving culture in USA

• Framing

• Expect and Attending to Emotions

• Working on a plan / resources


Dementia Driving Resources• Hartford Group “Conversations About Alzheimers,

Dementia and Driving: https://s0.hfdstatic.com/sites/the_hartford/files/at‐the‐crossroads‐2012.pdf

• Alzheimer’s Association : https://www.alz.org/help‐support/caregiving/safety/dementia‐driving

• Alternative transportation options (Local Shuttle, volunteers, Uber, Lyft, Go Go Grandparent). Refer to your Area Agency on Aging for options!

Medication Management

• Risks from taking medications incorrectly can be dire.

• Align around understood QOL goals (independence, improved mood, clearer thinking)

• Ideally, start with oversight in early stages

• Medication management aids


Medication Resources

• Smart Medisets

• Pharmacy services

Medication Management Apps


Guns and Dementia

Creating a Plan for Gun Safety

• Understand reason for gun ownership

• Framing ‐ “Passing along a legacy,” “retiring from” fire arms

• Explore utilizing a trusted authority figure

• Expect and Tend to Emotions

• Ensure follow through


Gun Safety Resources

• Alz Assoc “Fire Arm Safety” www.alz.org/media/Documents/alzheimers‐dementia‐firearm‐safety‐ts.pdf

• Firearm Storage options: https://hiprc.org/firearm/firearm‐storage‐wa/

Other Safety Concerns

• Home Safety

• “Wandering”

• Emergency Preparedness

• Elder Abuse & Financial Exploitation

Dementia Safety Info Kit


Fall Risk

• 1/3 of adults aged >65 experience a fall annually

• Adults with dementia are twice as likely to experience falls, compared to older adults without dementia.

• People with dementia who fall are 5 times more likely to be admitted to long‐term care facilities.

• People with dementia are at higher risk for fractures, head injuries, and even death.

Fernando MPT, Fraser MPT, et al, 2017 Risk Factors Associated with Falls in Older Adults with Dementia: A Systematic Review

Actions That Could Help Preserve Cognition and Potentially Help Prevent Falls

• Tie balance issues back to the progressing dementia.

• Reviewing medications

• Providing strength, balance, and cognitive training

• Correcting vision and hearing problems

• Correcting Vitamin D deficiency

• Checking the home to remove any hazards to walking safely (CLUTTER!) Lighting?

– Occupational therapy referral?


Safety Resources

https://www.dshs.wa.gov/altsa/dementia-action-collaborative

Clinic visit: Dementia or MCIFind out: What concerns them the most about having dementia. What else?

Find out: What resources can you easily offer:

‐ “I have Alzheimer’s” at Alz Assoc Website

‐ (vs. Caregiver focused resources)

– Ask for them to come back with a support next time (family or friend)

– “there’s nothing we can do” vs “things we can do to improve your quality of life”


Communicating with PWD

• Speak directly to patient

• Don’t exclude them from conversations

• Allow time to express thoughts, feelings, needs and to respond

• Ask what the person is comfortable doing and what they need help with

• Handout!

Alz. Assoc: Taking Action Workbook

Found on Alz.org, click ‘I have Alzheimer’s”, then ‘Know what to expect” then “Get Educated”, pdf handout link down below


Handouts on Safety; from Taking Action Workbook

“A diagnosis means its time to take certain safety precautions”

“You can live at home longer, if safety measures are in place

“The disease messes with your balance”

From Taking Action Workbook


Any Stage Communication Tips

• ABCs of communication: pay attention to what worked/didn’t work last time.

• Keep assessing: What is THEIR worry/concern, tie in your concern to theirs.

• Address isolation, address mental health.

• Safety: (meds, guns, falls/balance, driving)

• ALWAYS GIVE A HANDOUT

Future visits: Blending instruction with patient and proxy/DPOA

• Schedule f/u visits

– Bring in DPOA or a support,• What if they don’t? What if didn’t do ‘the

conversation”

– Encourage Activity, Encourage discussion

– “How are you coping?” “Tell me about it”

– Offer suggestions:• Stay Active or Be Easy on Yourself.


…And the Handout…

• Just print out a copy of the workbook.

• Circle what you talked about.

• It makes it more real! It’s a prescription!

Caregiver assistance resources

• Alz Association

• Dementia Roadmap

• The Conversation Project

• Area Agency on Aging


Resource Links• Community Living Connections (Area Agencies on Aging): www.waclc.org/consite/connect/

• Alz Assoc Newly Dx Packet: https://www.alz.org/media/Documents/newly‐diagnosed‐packet.pdf

• Alz Assoc “Fire Arm Safety” www.alz.org/media/Documents/alzheimers‐dementia‐firearm‐safety‐ts.pdf

• Dementia Road Map and Safety Info: https://www.dshs.wa.gov/altsa/dementia‐action‐collaborative

• Hartford Group “Conversations About Alzheimers, Dementia & Driving” https://s0.hfdstatic.com/sites/the_hartford/files/cmme‐crossroads.pdf

• The Conversation Project – Dementia Kit: https://theconversationproject.org/wp‐content/uploads/2017/02/ConversationProject‐StarterKit‐Alzheimers‐English.pdf

• DPOA forms from NW Justice Project/SU: https://www.washingtonlawhelp.org/files/C9D2EA3F‐0350‐D9AF‐ACAE‐BF37E9BC9FFA/attachments/392A5117‐D581‐FCE9‐5EF2‐E382E46B92AC/9608en_power‐of‐attorney‐documents.pdf

Questions?

Piruz Huda ARNP Karen Clay MSW LICSWPsychiatric Nurse Practitioner UW Memory & Brain Wellness huda@huda‐np.com [email protected]


References• www.aarp.org/research/topics/community/info-2018/2018-home-community-preference.html

• Manuel Montero-Odasso, MD, PhD, AGSF; and Mark Speechley, PhD. “Falls in Cognitively Impaired Older Adults: Implications for Risk Assessment and Prevention.” It appears online ahead of print in the Journal of the American Geriatrics Society.

• Physiotherapy Canada Spring 2017; 69(2): 161–170. Risk Factors Associated with Falls in Older Adults with Dementia: A Systematic Review, Fernando, MPT, Michelle Fraser, MPT,Jane Hendriksen, MPT, Corey H. Kim, MPT, and Susan W. Muir-Hunter PhD, PT

• Alzheimers Care Today. 2007; 8(4):309-318; Evidence-Based Interventions to Improve Quality of Life for Individuals with Dementia; Rebecca Logsdon PhD, Susan McCurry PhD, Linda Teri PhD

• Mace, N.L. and P.V. Rabins. 2017. The 36-Hour Day, 6th Ed. Baltimore: Johns Hopkins University Press

• N. M. Silverstein, G. Flaherty, T. S. Tobin, Dementia and Wandering Behavior: concern for the Lost Elder, New York, NY, USA:Springer, pp. 28-51, 2006.

• Terri et al. Cogntively Impaired Older Persons and Caregivers Perspectives on Dementia Specific Advanced Care planning. JAMS, November 2020

• Sussman, Pimienta, Hayward. Engaging persions with dementia in advance care planning: Challendges and opportunities , Dementia (London), 2020 Dec 8.
