Abstract
AbstractCommunity health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. The aim of this study was to examine family care-givers’ knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Multinomial logistic regression analysis was used to identify predictors of family care-givers’ knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Characteristics of family care-givers (e.g.education level) and factors related to the care-giving circumstances (e.g.negative impact of care-giving) predicted family care-givers’ knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g.reluctance to use services) and/or the health-care services (e.g.low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Strategies aimed at addressing the non-use of services should emphasise individuals’ and families’ needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care.
Highlights
In 2015, dementia affected 47 million people worldwide, and the condition is a major cause of disability and dependency among older people (World Health Organization, 2017)
A previous study using the same sample as the current study indicated that demographic characteristics and socio-demographic characteristics of family care-givers were associated with the amount of health-care services used (Moholt et al, 2018)
40.2 per cent of the participants knew of unused community health-care services, 11.6 per cent were unaware of unused services and 45.6 per cent reported uncertainty
Summary
In 2015, dementia affected 47 million people worldwide, and the condition is a major cause of disability and dependency among older people (World Health Organization, 2017). Dementia care strategies have proposed that people with dementia should be enabled to live in the community and to receive care aligned with their wishes and preferences (Ministry of Health and Care Services, 2015; Organisation for Economic Co-operation and Development (OECD), 2015; World Health Organization, 2017). A recent meta-analysis demonstrated that almost one-third of all family care-givers of persons with dementia experience depression and that approximately one-half perceive their care-giving role to be burdensome (Collins and Kishita, 2019). Factors such as a higher level of care-giver burden (Hughes et al, 2014) and a longer duration of care-giving (Lethin et al, 2016a) have previously been related to greater needs for health-care services
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