Non-use of community health-care services – an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

Abstract

Community 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.

Indigenous Sami Family Caregivers’ Experiences With Accessing and Collaborating With Municipal Health and Care Services

“…Although the research-based knowledge about the experiences of Sami family caregivers is sparse, we agree with Thorne et al (1997) that “going in blind” can be counterproductive to knowledge development, and that a “critical analysis of the existing knowledge represents an appropriate platform on which to build a qualitative design” (p. 173). This study is part of a larger research project investigating the use and nonuse of community health care services among home-dwelling older adults and family caregivers in northern Norway (Blix & Hamran, 2017, 2019; Henriksen et al, 2020; Moholt et al, 2020, 2021). The overall project included a survey with 430 family caregivers in a sample of 32 municipalities, focus groups with healthcare professionals in municipal health and care services (henceforth, public care services) in five municipalities, and individual interviews with family caregivers in ten municipalities.…”

Health service use before and after dementia diagnosis: a retrospective matched case–control study

“…Previous studies show that day programmes are generally underutilised among persons with dementia. [66][67][68] Caregivers may lack knowledge of short-term care options, or the options may be limited, particularly in rural communities in Saskatchewan. 69 Moreover, low use may be related to low perceived need, 68 feelings of guilt and loneliness in caregivers, 70 and negative perceptions of care programmes held by both caregivers and care recipients.…”

“…[66][67][68] Caregivers may lack knowledge of short-term care options, or the options may be limited, particularly in rural communities in Saskatchewan. 69 Moreover, low use may be related to low perceived need, 68 feelings of guilt and loneliness in caregivers, 70 and negative perceptions of care programmes held by both caregivers and care recipients. 67 68 Future longitudinal investigations could yield further insight into service use variations by considering the causes of use, appropriateness and quality of services, and perceptions and preferences for health services among persons with dementia and their families.…”

“…Less than 8% of older adults with dementia were observed to use short-term institutional care annually. Previous studies show that day programmes are generally underutilised among persons with dementia 66–68. Caregivers may lack knowledge of short-term care options, or the options may be limited, particularly in rural communities in Saskatchewan 69.…”

How to stay motivated: A focus group study of Norwegian caregivers' experiences with community healthcare services to their parents with dementia

“…Even if the adult children in our study wanted to be partners in the community healthcare services, not all caregivers do. Spouses and others who cohabit with the persons with dementia might need other forms of support to reduce the demands on caregiving (Moholt et al, 2020). The sample in our study mainly consisted of highly educated women between the age of 50 and 59 and working full-time.…”