P3-469: Impact of decline on older carers of adults with Down syndrome affected by dementia

Abstract

A convenience sample of older carers of aging adults with Down syndrome (DS) in the United States were studied to ascertain what effects such caregiving may have on them given the presence or possibility of age-associated decline or dementia. Examined were the comparative levels of care provided, key signs noted when decline was beginning, the subjective burden experienced, what the key health factors associated with carers faced with a changed level of care. The study found that these elders were long-term, committed carers who decided early in their lives to look after their relative with DS over their lifetime. When faced with the onset and ongoing progression of dementia, their commitment was still evident as evidenced by adopting physical accommodations and finding ways to continue to provide care at home, while also seeking help from outside sources. Most saw a family or group home environment as the place of choice for their relative with DS when they can no longer offer care. The study did not observe any burn-out or significant health related problems associated with their continued caregiving save for their concerns about day-to-day strain and uncertainty about what will happen in the future. Information was gained on points for intervention and organizational planning for long-term provision of psychiatric and social supports to persons in these caregiving situations.