Designing meaningful dementia care

Abstract

In this issue, Csipke et al. (2020) report acceptability and feasibility of the Promoting Independence in Dementia (PRIDE) three-session intervention, delivered to people living with mild dementia together with a family or friend supporter, by facilitators after a short training. The intervention supports participants to increase activities and build on communication skills and plan changes they would like to try out between and after sessions (Lord et al., 2020). The intervention proved acceptable to participants and facilitators, being completed by nearly three-quarters of participants. These initial feasibility findings from a study evaluating a brief, manualized intervention targeted at people with dementia soon after diagnosis are promising. If the effectiveness of the PRIDE intervention is demonstrated in a future trial, its wide availability might potentially contribute to national priorities to enhance currently available dementia post-diagnostic care. A progress review for the UK Prime Minister’s 2020DementiaChallenge indicated that theUKpostdiagnostic care provision was improving, but care standards remained variable and work was needed to ensure consistent, high-quality meaningful care (Department of Health and Social Care, 2019). NHS England’s Well Pathway for Dementia and other national initiatives stress the importance of promoting independence for people living with dementia, and work is ongoing to develop metrics around what constitutes “meaningful care” (Public Health England, 2018). Living well with dementia has been conceptualized as living with quality of life, choice, autonomy, dignity, and as independently as possible. There can be a tension between independence as an expression of full autonomy and the interdependence that can enable people with dementia to live in their own homes for longer. To our knowledge, only two interventions have been associated with longer duration living independently in people with dementia, to date. Both were delivered by clinically trained staff (Lord et al., 2020). Thus, the development of a new intervention to improve postdiagnostic care that promotes independence and could be delivered by a broad range of facilitators (voluntary sector staff, and people with and without clinical training), as in Csipke et al. (2020), could potentially be an important advance. Csipke et al. (2020) included a broad range of measures to identify a suitable primary outcome for a future pragmatic trial of PRIDE. They propose a measure of self-management, reflecting findings of many studies, that people with dementia prioritize autonomy and living independently as possible, especially early in their illness (Rapaport et al., 2020). This fits with one of the plannedmechanisms of action of PRIDE, to reduce “prescribed disengagement”, a term coined by Kate Swaffer to describe post-diagnostic advice which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This can result in isolation, loss of hope, self-esteem and self-identity, and threaten social health. This theory posits that a decline in activities and engagement in self-management of care and other activities can be explained by a functional loss related to these social processes, additional to any losses related to the symptoms of the dementia illness itself. Such a decline is potentially reversible with intervention and empowering care (Low et al., 2018; Swaffer, 2015). PRIDE is an intervention focused on empowering and self-management. If effective and implemented in practice in future, it may benefit people living with dementia with and without regular supporters. As in most previous randomized controlled trials evaluating psychological interventions delivered directly to people living with dementia, the involvement of a family carer (termed a supporter in this study) is a prerequisite of participation. In their paper describing development of the PRIDE intervention, the PRIDE group comment that “whether those who did not have a supporter could engage with the manual warrant[s] further investigation” (Yates et al., 2019). As the authors describe in the paper in this issue, the inclusion of supporters in intervention sessions can be key to implementation because “social factors (such as relationships with family or friends) influence the dynamic balance between opportunities and limitations in dementia” (Csikpe et al., 2020). In addition, to accurately assess the likely utility of a study, the perspective of family carers/supporters can be critical. The limited opportunities for people living with dementia to participate in intervention studies unless their family carer/supporter is willing and able to do so (Bethell et al., 2018) too are problematic. We cannot assume that interventions that work when delivered to dyads will also be effective when delivered to people with dementia alone. Consequently, the evidence base for International Psychogeriatrics (2021), 33:6, 547–549 © International Psychogeriatric Association 2021