Self-Management of Dementia by Family Carers: A Scoping Review

Abstract

Family carers increasingly take on the responsibility of self-management of dementia as the condition progresses. However, research on this topic is scarce. This scoping review aimed to identify the key characteristics related to self-management of dementia by carers including its components, theoretical/conceptual frameworks that underpinned these components and measurements. A scoping review was conducted in 8 databases and 16 publications met the inclusion criteria. Twenty-two components were identified and grouped into two categories: activities and carer characteristics and skills. The identified theoretical/conceptual frameworks were numerous and varied as were the measures. There was a little consistency of the key characteristics of self-management of dementia by carers. The findings assist carers and healthcare providers to understand the components involved in self-managing dementia which will guide the development and delivery of self-management support interventions for carers. Further research is required to validate these findings and to develop specialized conceptual frameworks and measures.

A Novel Instrument for Caregivers in Managing Neuropsychiatric Symptoms of Dementia: Baycrest Quick-Response Caregiver ToolTM *

“…There is limited literature on the use of reflection and caregiver management of affect when responding to behavioural symptoms of the PWD. ( 26 , 27 ) The current study expands the scope of self-management support resources for family caregivers by describing a new online educational tool that assists caregivers to calm down, pause, and reflect empathically before responding to the PWD. Future studies could include both informal and formal caregivers in the community and in institutional settings.…”

Development and Validation of the Self-management of Dementia by Family Carers (SMDFC) Scale

“…First, the researchers conducted a scoping review to investigate how the concept of self-management of dementia by family carers. 16 Then, the researchers explored the perceptions of this concept by interviewing 5 experts in dementia care and 7 family carers with various socio-demographical variables. The results of the literature review, and the interviews with the experts and carers were refined, combined and discussed by performing a hybrid concept analysis.…”

“…The results of the literature review, and the interviews with the experts and carers were refined, combined and discussed by performing a hybrid concept analysis. 16 This process ensured generating comprehensive and thorough items to fully capture the concept under investigation. Each of the generated item had a 5-point Likert scale with 1 indicating “strongly disagree” and 5 indicating “strongly agree.” The items were phrased to avoid vagueness and biases, double negatives, and double-barreled questions.…”

“…16 This review also revealed a lack of any measure specific for this concept. 16 Instead, instruments measuring other concepts, such quality-of-life, caregiving self-efficacy and burden, were used. This presents an important gap which this study aimed to fill by developing and validating the Self-management of Dementia by Family Carers (SMDFC) scale.…”

“…12 In 2006, the concept of self-management was applied to people living with dementia. 13 Since then, most of the literature has focused on self-management by people living with dementia in the early stages [14][15][16] and possibly this focus relates to the implication that "self" is only the responsibility of the person living with dementia. However, it is acknowledged that self-management of a chronic health condition may involve others.…”