An extended review of couple-centred interventions in dementia: Exploring the what and why — Part B

Abstract

This scoping review is an extended version of a narrative review of couple-centred interventions in dementia shared in part A and the previous publication in this edition. The rationale for expanding study A emerged through the fact that most dyadic interventions have samples consisting of a majority of couples. The exclusion of interventions with samples of mixed relationships in part A therefore contributed to a narrow picture of joint dyadic interventions for couples in which one partner has a dementia. The aim of this second review is to explore the 'what' (types of interventions) and the 'why' (objectives and outcome measures) of dyadic interventions in which sample consists of a majority of couples/spouses and in which people with dementia and caregivers jointly participate. Method A five-step framework for scoping reviews guided the procedure. Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus, and Web of Science. Results Twenty-one studies with various types of psychosocial interventions were included. The main outcome measure for people with dementia was related to cognitive function, respectively caregiver burden and depression for caregivers. Conclusions The findings of this extended review of joint dyadic interventions in dementia are in line with the findings of part A regarding the negative approach of outcomes, lack of a genuine dyadic approach, lack of tailored support, neglect of interpersonal issues and the overlook of the views of people with dementia. This review also recognises that measures of caregiver burden, as well as relationship quality should be considered in samples of mixed relationships due to the different significance of burden and relationship quality for a spouse as opposed to an adult child or friend.

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

“…These core skills can be found in several of our themes, for example in "adapting activity to capability", "meaningful activities and relationships" and "communication and interaction", and seem to be suitable goals for self-management in Another important aspect of self-management for people with dementia would be easy access. According to the review conducted by Quinn et al (2016a) and the review of Bielsten & Hellström (2017b), self-management interventions for people with dementia are dependent on the delivery of professionals and on particular locations, which leads to various limits such as limited access and wider dissemination. Given that the number of couples where one partner has a diagnosis of dementia will increase in the coming years, there is a need for support that are not solely dependent on resources in health care.…”

“…As a first step of the "Living Life and Doing Things Together" study, the research team undertook a narrative review (Bielsten & Hellström, 2017a) and a scoping review (Bielsten & Hellström, 2017b) of the literature with the aim to map interventions for couples where one partner has a diagnosis of dementia. The reviews provided an overall view of types and objectives of couple-based interventions and to what extent they addressed the couple´s relationship.…”

“…In recent years, several authors have highlighted the urgent need for interventions that support couples’ relationships and interaction (see, for example, Ablitt et al, 2009; Balfour, 2014; Bielsten & Hellström, 2017a, 2017b; McGovern, 2011). Support aimed at couples where one partner has a diagnosis of dementia would be advised to target the couples’ interaction, communication, and closeness in the context of everyday life, as communication and interaction often become problematic areas for couples living with dementia and have a significant impact on relationship quality (Boots, de Vugt, Withagen, Kempen, & Verhey, 2016; Reilly, Relkin, & Zbrozek, 2006; Wherton & Monk, 2008).…”

What is important to people living with dementia?: the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions

“…Indeed, outcomes that are salient to the intervention may not always be consistent with what people living with dementia value. This is perhaps symptomatic of a wider societal issue where people living with dementia are all too often positioned as a ‘seldom heard group’, encounter stigma on a regular basis[16], and are often not consulted about what outcomes are important to measure and, by implication, what interventions therefore might be desirable [16, 17]. Whilst the perspectives of people living with dementia and carers on desirable outcomes of community care captured by Bamford and Bruce constitutes important research [18], it is nearly two decades old.…”

Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial

“…In the United Kingdom, alongside mainstream health and social care services, some charities such as the Mental Health Foundation, Age UK and the Alzheimer’s society have long provided localized support services and opportunities for people with dementia and their families to access community engagement programs. While welcome, there remains a dearth of dyadic, couple-centered approaches [ 18 , 19 ], with most interventions for couples where one partner has a dementia overwhelmingly emphasizing the condition (the dementia), rather than on the needs of partners as a couple [ 20 - 24 ]. In Sweden, most people with dementia live in their homes, in which they require care and support.…”