What happens for informal caregivers during transition to increased levels of care for the person with dementia? A systematic review protocol

Abstract

BackgroundDementia is a globally prevalent disease that requires ongoing and increasing levels of care, often provided in the first instance by informal caregivers. Supporting transitions in informal caregiving in dementia is a pertinent issue for caregivers, care providers and governments. There is no existing systematic review that seeks to identify and map the body of literature regarding the review question: ‘What happens for informal caregivers during transition to increased levels of care for the person with dementia?’Methods/designASSIA, CINAHL+, MEDLINE, PsycINFO, SCIE, Social Service Abstracts and Web of Science will be systematically searched. Specialist dementia research libraries will be contacted. Reviews identified as relevant during the search process, their reference lists, and reference lists of accepted papers will be hand-searched. Qualitative, quantitative and mixed methods studies that seek to represent the experiences of, or examine the impact upon, informal caregivers during transition to increased formal care for the person with dementia will be eligible for inclusion. Synthesis will be segregated into qualitative and quantitative papers. Findings will be summarised, and the review will be prepared for publication.DiscussionThe review will seek to identify potentially vulnerable groups in need of support and as such, inform the practice of those offering support. It will also inform future research by highlighting areas in which current literature is insubstantial.Systematic review registrationPROSPERO CRD42017067248Electronic supplementary materialThe online version of this article (10.1186/s13643-018-0755-0) contains supplementary material, which is available to authorized users.

Bibliometric Analysis of the Informal Caregiver’s Scientific Production

“…Alzheimer's disease is a progressive, disabling and long-term neurodegenerative disease, characterised by cognitive impairment, progressive loss of autonomy and behavioural disorders, often manifesting with memory loss and subsequent progression to an inability to perform basic activities of daily living [23][24][25][26][27][28].…”

“…Lack of strategies to cope with these demands may have a negative impact on the quality of care provided to the person as well as on the quality of life of the informal caregivers themselves. The literature shows that the quality of life of informal caregivers of people with Alzheimer's disease has been shown to be lower than that of informal caregivers of people without Alzheimer's disease, which may be one of the driving factors for the abandonment of care provision, as well as the increase in work restrictions and decrease in productivity rates [24,26].…”

The transition of care from farm-based daycare for people with dementia: The perspective of next of kin

“…In this study, a “transition” is understood as a shift between FDC to another service in the municipality. Next of kin typically experience transitions several times because the person with dementia will require more comprehensive care during the dementia course (Cranwell et al, 2018 ). In Norway, a person with dementia who stops attending an FDC most often transitions to nursing-home care.…”