Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review

Abstract

Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden. Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief. Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4-16 sessions of which 1-3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention, but not at three month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention 2 over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the GRADE system we judged the quality of evidence to be very low for depression and low for burden, knowledge and predeath grief, reducing our confidence in any of the effect estimates. Conclusion: There was not sufficient evidence to support nor refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

Development of a Caregivers’ Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study (Preprint)

“…A systematic review conducted by Godwin et al [14] on technology-driven interventions for caregivers of PwDs found that these interventions showed positive results in the potential reduction of the caregivers' burden, improvement in their mental health, increase in their caregiving skills, and increase in competence as a direct benefit from online education, internet-based support groups, computer-mediated interactive voice response systems, and online skill building [14]. This is in line with the current trends of digital interventions for facilitating patients' and caregivers' empowerment [15][16][17]. Another reason for this growing interest for CH in supporting dementia home management is that it can offer a cost-effective alternative to face-to-face care, and it has been progressively integrated into hospitals, physician's offices, patient homes, and other settings.…”

Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

“…Educational interventions for caregivers of people with dementia are a commonly tested intervention; however, improved knowledge, the direct outcome expected of an educational intervention, is often ignored. Our systematic review of educational interventions on the progression of dementia found only two of eleven studies measured dementia knowledge as an outcome, while all studies measured outcomes of burden and depression (Moore et al, 2019). Given that only 39% of participants (data not shown) in the current study accurately identified dementia as life shortening, it appears that the availability and effectiveness of caregiver education interventions require review and consideration of health literacy.…”

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

“…There is a need for continuing education and advanced training to increase knowledge about dementia for both informal and formal dementia caregivers to offer appropriate ongoing care . Two reviews found educational interventions for formal and informal caregivers were able to improve mental health and burden, while another study found that improving knowledge can improve care …”