Abstract
BackgroundThe knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. This feeling may also suggest an experience of moral distress. The aim of this systematic review is to synthesise qualitative evidence relating to these experiences.MethodsThis review adopts a narrative synthesis approach. A search will be conducted for studies written in the English language in the bibliographic databases MEDLINE Complete, CINAHL, EMBASE, PsycINFO, Web of Science and Academic Search Complete covering periods from 1984 to present. Included studies will be qualitative or mixed-methods designs. The search terms will be related to dementia and caregivers, and the process will be focused on dementia at the moderate to the advanced stages within the domestic home setting. Reference lists of included papers will also be searched for additional relevant citations. Search terms and strategies will be checked by two independent reviewers. The identification of abstracts and full texts of studies will be done by the author, while the quality and the risk of bias will also be checked by the two independent reviewers.DiscussionPsychological distress is cited as an experience reported within informal caregiving. For the caregiver, it is associated with a negative impact on general health. To date, no synthesis exists on the specific experience of informal caregiving for people with moderate to advanced dementia within the domestic home setting. This review considers that variation of accounts contributes to how the informal caregivers’ general experience is explored in future research. This may enable gaps in current knowledge to be highlighted within the wider context of caregiving in the domestic home setting.Systematic review registrationThis review is registered with PROSPERO (CRD42020183649).
Highlights
The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited
Review aims and question The aim of this review is to explore informal caregivers’ experiences of home-based caregiving for people with a moderate to advanced dementia as the review question is ‘How do informal caregivers describe their experience of providing home-based care for people with moderate to advanced dementia? Many tools have been suggested on how reviews such as this may be conducted
Accounts of the duration of time spent caregiving and caregivers’ feelings or emotions during care provision will be of interest. Examples of these may include the duration of time spent providing care, relationship-based factors, isolation and feelings of guilt experienced. Those experiences relevant to caring for people with moderate to advanced dementia will be reviewed and other experiences aimed at the general population or other illnesses will be excluded
Summary
The knowledge about the experience of informal caregivers who provide care to people with moderate to advanced dementia in a domestic home setting is limited. A consequence of long hours of caregiving in addition to dealing with normal challenges of daily living is their experience of a poor quality of life. Some of their experiences may be described in terms of a feeling of powerlessness to make changes during care provision. Dementia is described as a progressive disease that affects cognitive abilities and causes everyday functional capabilities to deteriorate [10, 16]. Regardless of the age, the overall number of people with dementia is predicted to rise to over 2 million by 2051 unless a cure is found [24, 28]
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