Abstract
Motivation to provide care is a significant predictor of informal caregiving among family caregivers of persons with dementia. Adequate support is an important source of help and relief to caregivers, but fragmentation of dementia care services is common and better ways of supporting these caregivers are needed. Knowledge of adult-child caregivers' motivation and how this motivation is influenced by community healthcare services is lacking. The aim of this study is therefore to describe and explore adult children's experiences with community healthcare services for their home-dwelling parent with dementia and how these influence their caregiver motivation. The study applied a qualitative design based on three focus group interviews with 15 of these caregivers (40-69years) in Norway in 2017. The study results indicate three categories supporting adult children's sustained motivation as caregivers: (a) caregivers prioritize their parent's need for healthcare services over their own need for support; (b) caregivers need acknowledgement through respect and involvement; and (c) caregivers need timely information and competence as the dementia progresses. To stimulate collaboration among adult-child caregivers, their parents with dementia, and community healthcare services, we claim that a relationship-centred care framework could be emphasised as a way of supporting sustained motivation among caregivers to parents with dementia as part of community healthcare services.
Highlights
Dementia affects approximately 50 million persons worldwide and is one of the main causes of disability and dependency among older persons (WHO, 2020)
A range of community healthcare services is available to support home-dwelling parents with dementia, informal care provided by family caregivers constitutes a major portion of that care (OECD, 2018)
Our analysis has identified three categories that represent adult children's experiences with community healthcare services and how these influence their motivation in caring for home-dwelling parents with dementia
Summary
Dementia affects approximately 50 million persons worldwide and is one of the main causes of disability and dependency among older persons (WHO, 2020). In line with the current aging policies, the majority of older persons with dementia live as long as possible in their own homes. A range of community healthcare services is available to support home-dwelling parents with dementia, informal care provided by family caregivers constitutes a major portion of that care (OECD, 2018). With the need to handle a wide range of physical tasks and distressing emotional and behavioural symptoms in the home-dwelling period, caregiving has been described as progressively demanding, stressful and frustrating (Chiao et al, 2015; Yu et al, 2018). Previous research has often focused on the drawbacks of caregiving, while some studies emphasise the importance of a more balanced view (Lloyd et al, 2016) with a shift from ‘reducing stress’ to ‘optimising positive experience’ in the development of caregiving support services. Studies that have tried to explain the more rewarding aspects of caregiving are at a relatively early stage and the topic deserves greater attention (Lloyd et al, 2016; Yu et al, 2018)
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