Caregiver Wellbeing 1 2 Being a Caregiver is

Caregiver Well-being 1

2

Being a Caregiver is _____. 3

Uncertain Future (PWD) Neurodegenerative Symptoms Fatigue / Poor Sleep Difficult Decisions Not Enough Time Stress Cycle Difficult Communication Difficult Emotions 4

The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning. Burden Perceived Level of Burden Merrilees, J. (2016). The Impact of Dementia on Family Caregivers: What Is Research Teaching Us? . Current neurology and neuroscience reports, 16(10), 88. 5

Burden Stress Caregiver Burnout & Poor Health Outcomes 6

Health Outcomes Burden occurs in higher rates among caregivers caring for someone with dementia. • More likely to have elevated stress hormones and lower levels of antibody response • Higher incidence of cardiovascular disease and hypertension. • Sleep disruption and poor sleep quality • Increased incidence of clinical depression 7

Family Caregivers of Adults with IDD and Dementia Greater difficulties in diagnosing dementia • Missed diagnosis / misdiagnosis • Diagnostic overshadowing The course of dementia: • Earlier onset faster progression Life-long caregivers: • Parents have been life-long caregivers, but role must change as loved one transitions into the need for dementia care. • Siblings or other kin often step into role when parents are no longer able to provide caregiving Moran, J. A, & National Down Syndrome Society. (2019). Alzheimer’s disease and down syndrome: A 8 practical guidebook for caregivers.

Caregiver burnout • Withdrawal from friends, family, and activities previously enjoyed • Preoccupying concern about the future • Feeling blue, irritable, hopeless, and helpless • Changes in appetite, weight, or both • Changes in sleep patterns • Getting sick more often • Feelings of wanting to hurt self or the person caring for • Emotional and/or physical exhaustion • Excessive use of alcohol and/or sleep medications • Irritability, moodiness, negative responses and behavior • Difficulty concentrating • Preoccupying wish to run away or escape from your life 9

The problem with self-care 10

Reasons caregivers may not seek help • Caregiver identity • Family and Social Values • Guilt • Fear • Stigma • Cost 11

Self-care? “It’s just one more thing on my to do list” “Good grief, don’t give me one more thing that I have to do” “There isn’t enough time. ” 12

Put on the brakes 13

What Caregivers See as Important for Well-being #1 Maintain a good relationship with their loved one Spend time together in an enjoyable way 2. Be flexible and able to adapt to caregiving situations 3. Feel capable and confident to provide the best quality of care 4. Social support from family and friends 5. Stay involved in social activities Joling, K. J. , Windle, G. , Dröes, R. M. , Huisman, M. , Hertogh, C. M. M. , & Woods, R. T. (2017). What are the essential features of resilience for informal caregivers of people living with dementia? Aging & mental 14

Burden Resilience “Be flexible and able to adapt to caregiver situations” Senturk, S. G. , Akyol, M. A. , & Kucukguclu, O. (2018). The Relationship between Caregiver Burden and Psychological Resilience in Caregivers of Individuals with Dementia. Joling, K. J. , Windle, G. , Dröes, R. M. , Huisman, M. , Hertogh, C. M. M. , & Woods, R. T. (2017). What are the essential features of resilience for informal caregivers of people living with dementia? 15

Resilience A healthy adaptation and personal competence during exposure to significant adversity, trauma or stress. An active process of enduring, adapting, growing, and coping successfully. It is struggling well with what life sends our way. The path a family follows as it adapts and prospers in the face of stress. The capacity to adapt and cope with difficulty To bounce back or recover from stress. 16

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Burden Self-Efficacy “Feel capable and confident to provide the best quality of care. ”. Merrilees, J. (2016). The Impact of Dementia on Family Caregivers: What Is Research Teaching Us? . Current neurology and neuroscience reports, 16(10), 88. 18

Social Support Staying Connected “I believe it is important to engage as much as possible with those that understand this illness, to learn and to share for increased knowledge, appreciation, compassion and caregiving effectiveness. ” Caregiver quote Parkinson, M. , Carr, S. M. , Rushmer, R. , & Abley, C. (2016). Investigating what works to support family carers 19 of people with dementia: a rapid realist review. Journal of Public Health

Tools to Support Caregiver Well-being 20

The Caregiver’s To Do List Breath Stay hydrated Eat a healthy diet Get enough sleep Get adequate physical activity Access community resources, classes and use respite care Join a support group Relax 21

n y o nn i a t s u S rtn o p p Su Bu Life Preserver Bo lste r Boo Lig n n e ht st 22

Three Things 23

Resources Caring. com www. caring. com Caring. Info www. caringinfo. org Family Caregiver Alliance www. caregiver. org 24

www. Alz. Alaska. org 1 -800 - 478 -1080 Anchorage: 1 -907 -561 -3313 Our Mission: Support Alaskans affected by Alzheimer’s disease, related dementias and other disabilities to ensure quality of life. 25

References Byram, E. (2018). Late-Life Challenges in Caregiving for an Adult Child with a Developmental Disability. Generations, 42(3), 9 -14. Heller, T. , Scott, H. , & Janicki, M. P. (2017). Caregiving and Intellectual and Developmental Disabilities and Dementia. Joling, K. J. , Windle, G. , Dröes, R. M. , Huisman, M. , Hertogh, C. M. M. , & Woods, R. T. (2017). What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination. Aging & mental health, 21(5), 509517. Merrilee's, J. (2016). The Impact of Dementia on Family Caregivers: What Is Research Teaching Us? . Current neurology and neuroscience reports, 16(10), 88. Moran, J. A, & National Down Syndrome Society. (2019). Alzheimer’s disease and down syndrome: A practical guidebook for caregivers. Washington, DC: NDSS. Retrieved from https: //www. ndss. org/about-down-syndrome/publications/caregiver-guide-order-form/ 26

References Parkinson, M. , Carr, S. M. , Rushmer, R. , & Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health, 39(4), e 290 -e 301. Samia, L. W. , O’Sullivan, A. , Fallon, K. C. , Aboueissa, A. M. , & Hepburn, K. W. (2018). Building on self-efficacy for experienced family caregivers: The Savvy Advanced Program. The Gerontologist. Senturk, S. G. , Akyol, M. A. , & Kucukguclu, O. (2018). The Relationship between Caregiver Burden and Psychological Resilience in Caregivers of Individuals with Dementia. International Journal of Caring Sciences, 11(2), 1223. van der Lee, J. , Bakker, T. J. , Duivenvoorden, H. J. , & Dröes, R. M. (2014). Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing research reviews, 15, 76 -93. Werner, P. , Mittelman, M. S. , Goldstein, D. , & Heinik, J. (2011). Family stigma and caregiver burden in Alzheimer’s disease. The Gerontologist, 52(1), 89 -97. 27