Honolulu Community College

Lucas Morgan Ph.D.

I Ola Lāhui Behavioral Health

8/17/17

Describe the impacts of dementia caregiving on health and mental health

Understand different aspects of overwhelm, burnout, and compassion fatigue

Discuss strategies to increase caregiver self-care and empowerment

Learn and practice mindfulness

More than 15 million Americans (Karlawash et al., 2017) provide unpaid care for 5.5 million people with Alzheimer’s Disease (Herbert et al., 2013)

Estimated 27,000 people with Alzheimer’s Disease in Hawai’i in 2017 (Wevue, 2015)

83% of care for older adults provided by family and other “informal caregivers”(Friedman et al., 2015)

Majority lack access to specialized evidence-based training programs

Compared to caregivers of people without dementia and non-caregivers, caregivers of PWD experience: Higher levels of depression and anxiety disorders (Salim et al.,

2015)

Increased susceptibility to illness and health complications of their own (Fonareva & Oken, 2014)

Higher levels of physical strain (NAC & AARP, 201)

Significant sleep disturbance (von Kanel et al., 2014)

Elevated biomarkers for cardiovascular disease and impaired kidney function (Roepke et al., 2012; von Kanel et al., 2012)

Reduced immune function & slower wound healing (Kiecolt-Glaser et al., 1995, 1996)

More negative impacts on work/employment (NAC & AARP, 2016)

Isolation and Loss of social support Financial strain Feeling taken for granted Giving up things you love Not knowing how/who to ask for help Family conflict Never enough time Fear, guilt, frustration, self-doubt Anxiety and depression Illness, injury *Things outside of your control*

All of this on top of non-caregiving stressors!

Role changes Both caregiver and care receiver may struggle with role changes

Unrealistic expectations: of self and care receiver

Caregivers of PWD tend to be in the caregiver role much longer than other caregivers Caregiving 6+ years: 47.4% dementia caregivers vs. 29.4% non-dementia

(Kasper et al., 2015)

Communication challenges between caregiver and PWD Common as dementia progresses PWD may lose second language, only speaking in native tongue

not always spoken by children, spouse

Lack of training for caregiver duties Nursing tasks, medication management, managing finances,

knowledge of dementia

Nurse Social Worker Guardian Behavior Manager Cook Companion and Comforter Maid and Laundry Attendant Safety Officer Administrator, Chief Financial Officer and Key Decision Maker Home Repair Specialist Activity and Tour Director Family Counselor and Diplomat Liaison with professionals -- doctors etc. …Overwhelming!! 4

Negative Positive

Powerful

Powerless

Change outlook/attitude:

Recognize the

effects of the disease

Do Something:

Gain/Use Knowledge

and Skill to

form a Plan

Put the Plan to work

successfully

Steps to Change

to more Positive

and in Control

Feelings

29

The Four Quadrants of Feeling

Caregiver

Knowledge is power!

Learning more about how dementias affect a person and their behavior helps build empowerment and self-efficacy

Helps change attitude/outlook: see challenges as part of the disease; as efforts by the PWD to feel safe, in control

Evidence-based programs and LOTs of good books exist

6 weekly 2-hour group training sessions

Aimed at building knowledge, developing skills, and shift attitude/outlook of caregivers

Controlled studies found Savvy Caregiver participants had significantly less distress and burden at 6 months compared to control groups (Ostwald et al., 1999; Hepburn et al., 2001, 2003, 2007)

Improved reactions to behaviors and beliefs about caregiving Significant majority ”strongly agreed” to feeling more skillful,

knowledgeable, and confident with their caregiving after the training

2017: 39 Family caregivers in Central O’ahu had high attendance, high levels of satisfaction with the course

Speak up to friends and family

Spread the responsibility

Say “Yes” when someone offers assistance

Be willing to relinquish some control

Let someone help even if they might not do things exactly your way

Daycare, hired help/home care, respite care

Practice the mantra: “Self-care is not selfish!”

Maintain personal relationships

Prioritize activities that bring you enjoyment, revitalization, or hopeful perspectives Exercise

Mindfulness or other stress management practices

Spiritual/religious practices

Pay attention to unhelpful coping strategies

Find ways to pamper yourself

Get out out the house

Take care of your health and mental health

A natural ability we all have To pay attention to or be aware of things (physical

feelings, emotions, thoughts, sights, sounds, smells, tastes, etc.)

in the present moment (happening right NOW)

non-judgmentally (with an attitude of openness, allowing, curiosity, acceptance, etc.)

The opposite of “autopilot” Ever driven somewhere and not really remember doing so?

A skill we get better at with practice Like learning a language or instrument

Derived from Buddhist practices but found in all major religions and spiritual practices Christian Centering Prayer

Muslim prayer & meditations; Sufi (Rumi)

Jewish Shabbat

Greek & Roman Stoic philosophy

Henry David Thoreau’s writings

NOT a religion or set of beliefs It can help you be the best _________ you can be

Not what you do, but how you do it

Really good for us! LOTS of research support

Mindful breathing Diaphragmatic breathing

Posture

What did you notice/observe/experience?

Common concern: “I couldn’t clear my mind. I was doing it wrong!”

Our society and culture of medicine emphasizes curing

Lots of problems can be fixed/cured. And if can, can. Great!

Some cannot. Chronic Pain

Insomnia: the harder one tries to sleep, the harder it is to sleep

Getting/looking older

Loss

Dementia

Death

Unwanted/unacceptable thoughts/emotions We believe we can and should be able to control our emotions/thoughts

If no can, no can.

There is a third alternative to futile effort and giving up

Mindfulness practices help us to change our relationship to the distressing emotions and thoughts unfixable problems…

Mindfulness of body sensations (body scan)

What did you notice?

Common concern: “I don’t feel relaxed afterwards. It didn’t work!”

Mechanisms of mindfulness:

It changes our relationship with our negative

thoughts and feelings

Not about going in and “fixing” our thoughts or feelings

directly

Studies show suppression of unwanted

thoughts/emotions makes them stronger in the long run

Mindful communication

Get a partner

One person is the talker , one the listener

Instructions: for 1 minute, the talker talks about a topic: “One thing I remember about being younger is….” Listener: look at the talker, but do not respond in any way, no talking,

no facial expressions or nodding…

What did you notice?

Often we aren’t really listening because we Are thinking about what we want to say next Are filtering what they are saying through our own biased

perspectives

Switch roles.

The goal is not to escape real life! It is to live life more awake, more present, and more compassionately (including

towards ourselves)

Formal vs. Informal practices

Formal: Set aside time once a day Set a timer, silence your phone, find a quiet place

Informal: Mindfulness during daily activities (chores, commuting, conversations)

Using caregiving/respite care as practice While applying lotion, hand and feet massage

During long stretches of silence

While changing briefs

Notice your own feelings, thoughts, senses without judgment

Myth: the goal is to clear my mind; to “zen out” It’s NOT hypnosis or successfully getting “somewhere else”

Myth: only calm people can meditate

Myth: I have to meditate for at least 30 minutes to get any benefits

Myth: Someday I’ll be able to meditate perfectly! I’ll be mindful all the time! Our brains & bodies are wired to think, imagine, have emotions and pain

Myth: If I stress out, feel down, or get angry, my mindfulness practice isn’t working You are probably just human

Mindfulness doesn’t eliminate suffering

it changes our relationship to it

Serenity prayer: mindfulness is for what we can’t control

We often miss the richness of each moment because of worry (future) and rumination (past)

Mindfulness helps us see life in finer detail

Do you know the constellation of freckles or lines on your loved ones face?

Noticing our racing minds, slowing down, reconnecting with the present moment, we wake up again

STOP practice

Stop what you are doing

Take a deep mindful breath

Open to and Observe how you feel and what you are

thinking in the present moment

Proceed with awareness

Why is self-care hard?

Why is it important?

Other tools: Exercise & nutrition

Sleep!

Asking for help

Relaxation exercises, music

Social support; friends, support groups

Therapy support

Vacation

Executive Office of Aging/Aging and Disability Resource Centers http://health.hawaii.gov/eoa/ http://hawaiiadrc.org/ and http://elderlyaffairs.com

Legal and financial advising https://www.hawaii.edu/uhelp/files/DecidingWhatsNext_2011.pdf Elder abuse and neglect: Adult Protective Services https://www.caregiver.org/hawaii-adult-protective-services-aps-and-elder-

abuse-hotline Compassion Fatigue Awareness Project: www.cfap.com Public health nurses: free in-home assessments http://health.hawaii.gov/phnb/public-health-nurses-phn/ Senior Companions http://humanservices.hawaii.gov/blog/senior-companion-program/

Project Dana services http://www.projectdana.org/

Mediation Center of the Pacific—Kupuna Pono Program http://www.mediatehawaii.org/

Psychologist/counselor Hawai’i Psychological Association: http://www.hawaiipsychology.org

Join a support group and connect with other resources -Alzheimer’s Association: http://www.alz.org/hawaii/

Child and Family Services, Gerontology Program offers the REACH II in-home evidence based training for dementia caregivers as part of their Ohana Care Program. It’s available to anyone taking part in their services. They can be reached on Oahu at 543-8468 https://www.childandfamilyservice.org/programs/ohanacare/

The Alzheimer’s Association – Aloha Chapter has offered a support-group based evidence based training called “What’s Next?” on Oahu. They can be reached at http://www.alz.org/hawaii/ Aloha Chapter also offers dementia caregiver support groups statewide, as well as caregiver

classes, care consultation, trainings and education for the public and professionals. Local contact: (808) 591-2771, alohainfo@alz.org

Savvy Caregiver Program: Contact Jody Mishan (jmishan@hawaii.rr.com) of the Hawaii Alzheimer’s Disese Initiative (HADI) for information on availability)

Alzheimer Association: essentiALZ online training/certification http://www.alz.org/essentialz/

ACT on Alzheimer’s Disease Curriculum: http://www.actonalz.org/

National Institute of Ageing (NIA) and Alzheimer’s Disease Education And Referral Center (ADEAR) (https://www.nia.nih.gov/alzheimers)

Alzheimer’s Association (www.alz.org)

American Psychological Association (www.apa.org)

National Alzheimer’s Disease Research Center: https://nadrc.acl.gov Training resources toolkit: https://nadrc.acl.gov/node/77

Advance planning guides: https://nadrc.acl.gov/node/96

Administration On Ageing (AOA) & Administration for Community Living (ACL): https://aoa.acl.gov

Bell & Troxel, 2001. The Best Friends Staff: Building a Culture of Care in Alzheimer’s Programs. Health Professions Press: Baltimore, MD.

Bell, V., & Troxel, D. (2012). A Dignified Life: The Best FriendsTM Approach to Alzheimer's Care: A Guide for Care Partners. Health Communications, Inc

Coste, 2003. Learning to Speak Alzheimer’s. Houghton Mifflin: New York.

Feil, N., & de Klerk-Rubin, V. (2012). The validation breakthrough: Simple techniques for communicating with people with Alzheimer's and other dementias. Health Professions Press

Mace & Rabins, 2011. The 36-hour day: A family guide to caring for people who have Alzheimer disease, related dementias, and memory loss. JHU Press.

Zgola, 1999. Care that Works: A Relationship Approach to Persons with Dementia. Johns Hopkins University Press: Baltimore, MD.

Questions/Comments?

lmorgan@iolalahui.org

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