Influences on the access to and use of formal community care by people with dementia and their informal caregivers: a scoping review

Abstract

BackgroundThe literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia.MethodsWe conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies.ResultsA total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics.ConclusionsThe access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.

Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions

“…Lack of knowledge of services is not unique to rural areas, and in fact has been identified in the broader literature as a significant barrier to dementia service provision (Macleod et al, 2017;Phillipson, Jones, & Magee, 2014;Robinson et al, 2009;Sutcliffe, Roe, Jasper, Jolley, & Challis, 2013). Similarly, perceptions of services as inflexible, inappropriate for needs, and not tailored or person-centred are barriers regardless of rurality, as are some of the values and beliefs around caregiving (guilt, reluctance to ask for assistance) and care recipient resistance (Bieber, Nguyen, Meyer, & Stephan, 2019;Boots, Wolfs, Verhey, Kempen, & de Vugt, 2015;Brodaty et al, 2005;Greenwood & Smith, 2015;Macleod et al, 2017;Phillipson & Jones, 2012).…”

Knowledge evaluation instruments for dementia caregiver education programs: A scoping review

“…In addition, previous research suggests that informal caregivers may receive little education or knowledge support from primary care physicians, despite considering physicians the most reliable, trustworthy sources for information about the caregiving process . Similarly, evidence suggests that lack of dementia knowledge among informal caregivers may act as a barrier to accessing formal community care, potentially leading to worse outcomes for both caregivers and their family members with dementia. Furthermore, previous evidence suggests increasing both formal and informal caregivers’ knowledge domains (e.g., behavior management, disease management/progression, communication) can lead to improved ability to care and better outcomes in care receivers.…”

Experiences of Older Spousal Caregivers for Caring a Person with a Memory Disorder

“…They regarded their caregiver status as a natural continuation of a long marriage. These spousal caregivers echoed research that reported that they played an immensely important role, from a humane perspective and economic point of view, as they supplement the provision of formal community care [29].…”