Hawaii Alzheimer s Disease Initiative UH Center on Aging

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1 Presented by Jody Mishan, Project Consultant Hawaii Alzheimer s Disease Initiative UH Center on Aging jmishan@hawaii.rr.com August 17, Honolulu 1 Community College S University of Hawaii Center on Aging. Supported in part by a cooperative agreement No. 90AL from the Administration on Aging, Administration for Community Living, U.S. Department of Health and Human Services. Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions. Therefore, points of view or opinions do not necessarily represent official AoA, ACL, or DHHS policy. The grant was awarded to University of Hawaii Center on Aging for the Alzheimer s Disease Initiative: Specialized Supportive Services Program. 2 1

2 3 S An estimated 5.5 million individuals in the U.S. have Alzheimer s dementia. This includes appx 200,000 with early-onset under age 65. By 2050, this number may double. 1 in 10 persons age 65 and older has Alzheimer s disease or another form of dementia. S Hawaii stat: 27,000 with ADRD in 2017 (65+). Will grow to 35,000 by 2025, an increase of 30% S These figures do not include those who are undiagnosed. It s estimated that approximately 60-80% of the people who meet the diagnostic criteria for ADRD have not received a diagnosis.* S *Alzheimer s Association 2017 Facts & Figures; (Boustani, Peterson, Hanson, Harris & Lohr, 2003 from The Healthy Brain Initiative Road Map, CDC) 4 2

3 S 6 th leading cause of death in the U.S., killing more than breast cancer and prostate cancer combined S Every 66 seconds someone in the U.S. develops the disease S It s the most expensive chronic condition in the nation S Alzheimer s Association 2017 Facts & Figures 5 Dementia Caregivers About 70% of Alzheimer s care is provided in the home environment by unpaid or informal caregivers S In 2016 there were 66,000 dementia caregivers in Hawaii, delivering 75 million hours of unpaid care, at a total value of $944 million. 6 3

4 Dementia 7 What is Dementia? Disease of the brain that causes a decline in memory and intellectual functioning from some previously higher level of functioning that is severe enough to interfere with everyday life Dementia is NOT normal aging 4

5 Dementia vs. Alzheimer s What is the difference between dementia and Alzheimer s disease? Flowers Pansies Mums Tulips Daisies Roses 5

6 Dementia Frontotemporal dementia Vascular dementia Parkinson s dementia Lewy body dementia Alzheimer s dementia Alzheimer s is One Type of Dementia Vascular Dementia FTD Lewy Body Dementia Alzheimer s Disease Alzheimer s disease: 60-80% Includes mixed AD + VD Lewy Body Dementia: 10-25% S Parkinson spectrum Vascular Dementia: 6-10% S Stroke related Frontotemporal Dementia: 2-5% S Personality or language disturbance 12 6

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8 Another way to describe it. Climbing the mountain. Steadfast commitment. 15 Longtime dementia caregiving is like climbing Mt. Everest 16 8

9 You set out on the path. You pray for strength. You commit. You take it on. The journey of love. The burden of care. You prepare yourself. 17 There are levels. Year 1, year 2, year 3, year 4, year 5, year

10 The higher you get, the harder it is as years pass. But you keep going. 19 You rest at plateaus when your loved one is stable. But the rest does not last long

11 The climbing = all the emergencies, the setbacks in health, inevitable crises. 21 You just sleep when you can, but must still be vigilant 22 11

12 You ponder your journey. You evolve. 23 More years pass. The air is thin and you need oxygen. You can t breathe

13 The extreme challenge is nearing its end. 25 Now, the journey back to where and who? The descent and crossroads

14 You survived. Now what? 27 But it will take just as long to descend as it did to climb up the ongoing journey of grief

15 Just as dangerous, just as difficult, with new challenges. Recovery from caregiving. 29 Nothing is familiar. You can t relate. Nothing is the same

16 Crossroads The choice of what to do with the lifealtering experience You can t go back to who you were. Your life has been transformed. The old path doesn t work any more. How do you move on? You search and wait for joy again, until 31 You allow the grief to evolve. You can leave a Legacy to the experience 32 16

17 33 You can help others because you have walked the path. You can keep your loved ones memory alive and honor them. Person-centered care focuses on the individual needs of a person rather than on efficiencies of the care provider; and honors their values, choices, and preferences. Person-Centered Care for People with Dementia: A Theoretical and Conceptual Framework (Love and Pinkowitz) Dementia Action Alliance:

18 Personhood and Person-Centered Care Every person has his or her meaning of life, authenticity (personality, spirit, and character), history. interests, preferences, and need to continue to experience life at all stages of dementia. The person is not their dementia illness; rather, the condition is only one aspect of their current being. It is important to focus on the strengths of the person living with dementia rather than on diminished or lost abilities and capabilities. Also, to help support their personhood, it is important to enter the world of the person living with dementia to best understand, communicate with, and interpret the meaning of his or her behavioral expressions from their perspective. Person-Centered Care for People with Dementia: A Theoretical and Conceptual Framework (Love and Pinkowitz) 35 Recovering Dementia Caregivers After the loved one passes, we think it will all be ok, but it s not. The grief may have been hidden, shoved under the rug in order to be strong and cope. It all comes to the surface. PTSD, depression, reclusiveness. Relearning how to sleep well, care for oneself again when you re in the habit of caring for someone else 24/7. This is a different kind of grief that can last a long, long time. They need to recover financially, physically, mentally and spiritually

19 Dementia Caregivers Challenges The invisible second patients Sleep deprivation High levels of depression Higher risk of dementia Higher levels of Stress and Burden Physical bad health Financial hardship and legal challenges Social isolation, loss of friends 37 Recovering Dementia Caregivers Learning to Self-Care Relearning how to sleep again Brain Healthy Lifestyle (Diet, Exercise, Social Engagement) Meditation, Visualization Acknowledging depression, seeking help Develop new habit of caring for oneself Evidence-based interventions like REACH II, Savvy Caregiver Program Support Groups 38 19

20 Recovering Dementia Caregivers 55-90% of dementia caregivers report positive experiences such as enjoying togetherness, sharing activities, feeling a reciprocal bond, spiritual and personal growth, increased faith, and feelings of accomplishments and mastery. (Family Caregivers of People with Dementia; Henery Brodaty, MD, Dialogues in Clinical Neuroscience, 2009) 39 Just when the caterpillar thought the world was over, it became a butterfly 40 20

21 Thank you! 41 21