Understanding how users of home-based aged care services with cognitive impairment rate their social care related quality of life

Abstract Background Over the past decades, self-directed models of care have been implemented throughout the world to support older people, including those with dementia, to live at home. However, there is limited information about how self-directed home care is experienced by older people with cognitive impairment and dementia, and how their thinking informs their care choices and quality of life. Methods We used the ASCOT-Easy Read, a staggered reveal method, talk aloud techniques, probing questions, and physical assistance to support users of self-directed home care in Australia with cognitive impairment and dementia to discuss their Social Care Related Quality of Life (SCRQoL). Interviews were recorded, transcribed and analysed thematically in NVivo. Demographic, functional, cognitive and SCRQoL scores were analysed in Excel and SPSS. Analysis of both the quantitative and qualitative data for each participant allowed us to examine consistency or discordance between ratings and participants’ comments about their experiences within each domain. Results Twenty six older people with cognitive impairment and/or dementia completed an interview. Ratings of SCRQoL were more favourable in lower order domains (e.g. food and drink, personal cleanliness, accommodation comfort and cleanliness and safety) than in the higher order domains (e.g. occupation and social participation). Overall SCRQOL also varied significantly from 0.40 to 0.97. Despite variable ratings, all participants described unmet needs associated with limitations in personal function and mobility, transport and the amount and flexibility of home care services they received. Qualitative comments suggest many experienced more significant limitations than some of their ratings may imply. This was attributed to adaptation and acceptance of limitations as a normal part of aging. The choice to remain living in one’s own home was perceived as the most important outcome. Conclusions Some older people living at home with cognitive impairment and/or dementia adapt and accept their limitations as a normal part of the aging process. This affects expectations about their lives at home and their support. Rather than relying on self-direction, supports to live well at home could be enhanced by a greater emphasis on comprehensive needs assessment and more supports to promote reablement and enhance personal and community level participation.