Formal care, quality of life and patterns: decision-making involvement of african american dementia dyads Public Deposited

Dementia is a multifaceted disease characterized by a decline in cognitive functioning that can impair social functioning and eventually impair a person’s ability to care for oneself; the fifth leading cause of death for adults 65 years and older (S. Murphy, Kochanek, Xu, & Heron, 2015). An estimated 5.7 million people in the United States had a diagnosis of dementia in 2018; with total payments for health care, long-term care and hospice estimated at $277 billion (Alzheimer's Association, 2018). The impaired psychological and behavioral functioning characteristic of dementia negatively influences quality of life (QOL) of persons with dementia (PWD) (G. Logsdon, Gibbons, McCurry, & Teri, 1999; Hurt et al., 2010) and their caregivers (Sorensen & Conwell, 2011). Better QOL, on average, for PWDs and their caregivers has been associated with using formal care (e.g., outpatient services) (Ward & Ashaye, 2008) and perceived involvement of the PWD in everyday decision-making (Menne, Tucke, Whitlatch, & Feinberg, 2008). Though more non-Hispanic White older adults are living with dementia, African American older adults are disproportionately more likely to develop dementia compared with them and Hispanic older adults (Alzheimer's Association, 2018). Despite the estimated incidence in African American older adults—9.4% of African American older adults compared to 6.9% of non-Hispanic White older adults (Alzheimer's Association, 2018)—dementia is understudied in this population.

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