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Coping with dementia and older families of adults with Down syndrome
- Authors:
- JANICKI Matthew P., ZENDELL Anna, DEHAVEN Kathleen
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(3), August 2010, pp.391-407.
- Publisher:
- Sage
The study investigated a group of older carers of aging adults with Down syndrome (DS) to determine what effects such caregiving may have on them given the presence of dementia. The study also explored the comparative levels of care provided. Key signs were noted when decline was beginning – the subjective burden being experienced, and the key health factors when carers faced a changed level of care. Findings indicated that this group was made up of long-term, committed carers who have decided early on to look after their relative with DS over their lifetime. When faced the progression of dementia, their commitment was still apparent as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most participants saw a family or group home environment as the place of choice for their relative with DS when they decided they could no longer offer care. The study did not suggest any burn-out or significant health related problems associated with their continued caregiving.