3 Being a Caregiver is 4 Stress Cycle 5 Burden Merrilees J 2016 The Impact of Dementia on Family Caregivers What Is Research Teaching Us Current neurology and neuroscience reports ID: 1045901
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1. Caregiver Well-being1
2. 2
3. 3Being a Caregiveris __________.
4. 4Stress Cycle
5. 5BurdenMerrilees, J. (2016). The Impact of Dementia on Family Caregivers: What Is Research Teaching Us?. Current neurology and neuroscience reports, 16(10), 88.Perceived Level of BurdenThe extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.
6. 6StressBurdenCaregiver Burnout & Poor Health Outcomes
7. 7Health OutcomesBurden occurs in higher rates among caregivers caring for someone with dementia.More likely to have elevated stress hormones and lower levels of antibody responseHigher incidence of cardiovascular disease and hypertension.Sleep disruption and poor sleep quality Increased incidence of clinical depression
8. 8Greater difficulties in diagnosing dementiaMissed diagnosis / misdiagnosisDiagnostic overshadowingThe course of dementia: Earlier onset faster progressionLife-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 caregivingFamily Caregivers of Adults with IDD and DementiaMoran, J.A, & National Down Syndrome Society. (2019). Alzheimer’s disease and down syndrome: A practical guidebook for caregivers.
9. 9Caregiver burnoutWithdrawal 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
10. 10The problem with self-care
11. 11Caregiver identityFamily and Social Values Guilt FearStigmaCost Reasons caregivers may not seek help
12. 12Self-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.”
13. 13Put on the brakes
14. 14What Caregivers See as Important for Well-being#1 Maintain a good relationship with their loved one Spend time together in an enjoyable way2. Be flexible and able to adapt to caregiving situations3. Feel capable and confident to provide the best quality of care4. Social support from family and friends5. Stay involved in social activitiesJoling, 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 health
15. 15BurdenResilience“Be flexible and able to adapt to caregiver situations”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? Senturk, S. G., Akyol, M. A., & Kucukguclu, O. (2018). The Relationship between Caregiver Burden and Psychological Resilience in Caregivers of Individuals with Dementia.
16. 16The path a family follows as it adapts and prospers in the face of stress.The capacity to adapt and cope with difficultyTo bounce back or recover from stress.ResilienceA 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.
17. 17
18. 18BurdenSelf-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.
19. 19Social SupportStaying 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 quoteParkinson, 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
20. 20Tools to Support Caregiver Well-being
21. 21The Caregiver’s To Do ListBreathStay hydratedEat a healthy dietGet enough sleepGet adequate physical activityAccess community resources, classes and use respite careJoin a support groupRelax
22. 22SustainnLife PreserverSupportnBuoy nLightennBoostBolster
23. 23Three Things
24. 24ResourcesCaring.com www.caring.comCaringInfowww.caringinfo.orgFamily Caregiver Alliance www.caregiver.org
25. 25www.AlzAlaska.org 1-800- 478-1080 Anchorage: 1-907-561-3313Our Mission: Support Alaskans affected by Alzheimer’s disease, related dementias and other disabilities to ensure quality of life.
26. 26ReferencesByram, 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), 509-517.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/
27. 27ReferencesParkinson, 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), e290-e301.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..