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

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 to 16 sessions of which 1 to 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 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 grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates. CONCLUSION: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes.

BACKGROUND: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. METHODS: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. RESULTS: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. CONCLUSIONS: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Public sector residential aged care: identifying novel associations between quality indicators and other demographic and health-related factors.

OBJECTIVE: To explore associations among quality indicators (QI; e.g. pressure ulcers, falls and/or fractures, physical restraint, use of multiple medications, unplanned weight loss) of the Victorian Public Sector Residential Aged Care Services (VPSRACS) with other demographic and health-related factors. METHODS: Data for 380 residents over a 3-month period were extracted retrospectively from client databases at four VPSRAC facilities. RESULTS: Four significant logistic regression models were developed. The strongest models related to falls and polypharmacy. Significant associations for these models included the following: (1) residents with a higher body mass index were 6% less likely (95% confidence interval (CI) 1%-11%) to fall, whereas high levels of cognitive impairment increased the risk of falling by 8% (95% CI 2%-14%); (2) being ambulant with a gait aid more than doubled the risk of falling compared with non-ambulant residents (95% CI 19%-546%); and (3) higher cognitive impairment was associated with a 6% (95% CI 1%-11%) reduction in the likelihood of polypharmacy. CONCLUSIONS: Identification of significant relationships between the VPSRACS QI and other demographic and health-related factors is a preliminary step towards a more in-depth understanding of the factors that influence the QI and predict adverse events.