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

The neglect of interpersonal issues

According to Martire, Schulz, Helgeson, Small, and Saghafi (2010), dyadic interventions differ widely regarding involvement of interpersonal issues, which is also shown in this review. Neglect of interpersonal, and ‘real world’ impact, occurs when caregiver–care recipient relationships are being viewed as homogenous (Purkis & Ceci, 2015) which has a tendency to occur when relationship factors are disregarded. More than two-thirds of the studies in this review had samples of mixed relationships, a factor leading to high risk of neglect of the different significance of outcomes such as burden, strain, losses and quality of relationship for a spouse as opposed to an adult child or friend. Reasons for embracing a less dyadic approach in dyadic interventions may be due to the desire to apply findings to a broader population, and the conduction of group interventions which have benefits in regard to financial resources but disadvantages in addressing interpersonal issues (Martire et al., 2010). The lack of relational understanding has been highlighted in previous reviews of dyadic interventions (Moon & Adams, 2012; Van’t Leven et al., 2014) as well as the importance of differentiating between caregiver subgroups (Braun et al., 2009; Smits et al., 2007). A clearer relational understanding and taking into account the nature of the relationship could enhance interventions in dementia (Merrick et al., 2016) thus leading to that outcome measures such as burden, strain and relationship quality can be interpreted in the right context.

Need for relationship sustaining care

Sustaining relationships, especially close emotional relationships (Smebye & Kirkevold, 2013), is a crucial factor for the person with dementia to be able to maintain sense of personhood (Hellström et al., 2005; Phinney, 2002; Smebye & Kirkevold, 2013). Caring within families should be viewed from an holistic, historical and systemic perspective as each relationship has a specific dynamic with different strengths and weaknesses that affect the relationship (Morhardt & Spira, 2013). Unfortunately, the findings of this review suggest that most interventions failed in regard to an holistic approach. Dyadic interventions, in which a holistic approach is applied, should have increased potential to support close relationships, thus contributing to sustained sense of personhood, and for partners’ also sustained sense of couplehood.

Lack of tailored support

Two previous reviews of dyadic interventions (Moon & Adams, 2012; Van't Leven et al., 2014), which included studies with joint and separate sessions for people with dementia and caregivers, showed promising effects on both members of the dyad’s well-being. However, both reviews highlighted the need for a couplehood approach and for tailored support. The lack of tailored support in dementia care was also highlighted in our previous review of couple-centred interventions (Review, Part A). In order to tailor support and determining appropriate outcomes, the nature of the relationship must become considered more important, as well as the target of the intervention must be adapted to the specific needs of the dyad. The latter was also discussed in our previous review (Review, Part A) with regard to the assumptions of that relationships in dementia are assumed to be burdensome. The majority of the outcomes in this review are illness-specific, symptom-oriented and are focusing on negative aspects of dementia. Arguably, such an approach is not beneficial for all dyads and does not match the needs of all dyads. We believe, therefore, in line with Van't Leven (2014), that a structured needs assessment of both the person with dementia and the caregiver prior to the intervention would enhance stronger and more realistic effects. Additionally, an illness-specific and symptom-oriented approach may even impact on the dyads views of their situation when presented to a battery of outcomes related to negative aspects of dementia.

Overlooking the views of people with dementia

Exclusion of the person with dementia’s views was a recurring feature in this review; nearly one-third of the interventions based all their outcome measures on caregiver views only (Baker et al., 2012; Hanser et al., 2011; Judge et al., 2013; Martin-Cook et al., 2005; Neely et al., 2009; Prick et al., 2015). These studies clearly overlooked the views of people with dementia, but this might be a too simplistic conclusion to draw when interventions had different targets and different objectives. Judge et al. (2013), for example, with only outcome measures for caregivers, makes it clear that they focus on caregivers with a battery of outcome measures related to burden. However, it has to be questioned whether or not caregiver burden can be viewed in isolation from relationship dynamics and the nature of the relationship. A similar issue arises in the one study focusing exclusively on people with dementia, which involves goal setting and goal achievement in regard to personal, relevant goals (O’Sullivan et al., 2015). Even though the goal setting was primarily related to memory function, e.g. everyday life, habits, routines and personal goals, there is a reciprocal impact on a relationship and vice versa, not least when it comes to couples living in the same household. The remaining studies can thus be considered to focus on dyads, but they still lack a dyadic approach (i.e. overlooking relationship factors, failing to report on dyadic data and/or failing to include the views of people with dementia in dyadic data), with the exception of the two studies with qualitative outcomes (Auclair et al., 2009; Osman et al., 2016). However, not asking for people with dementia’s views is always difficult to justify, despite the severity of dementia (Clare, 2017; Dementia Alliance International, 2016). In this review, in which studies focus on mild to moderate dementia, it should be even harder to justify this phenomenon. Overlooking the views of people with dementia is not the only way to produce a fragmented picture of dyad’s dynamics; a fragmented picture might also occur when outcomes are proxy-measured.

Lack of easy-accessible support

The studies in this review were dependent on the delivery of professionals and/or required dyads to travel to community sites or clinics. Given that the number of couples living with dementia will increase in the coming years, support should not only be dependent on resources in the care sector. In recent years, there has been an increasing interest in cost-effective interventions for people with dementia and informal caregivers such as self-management interventions (Quinn et al., 2016). Self-management for people with dementia, however, could be considered controversial due to a common (mis) conception that people with dementia are unable to learn new skills (Martin, Turner, Wallace, & Bradbury, 2013; Mountain, 2006) and that they should not be given too much responsibility over their situation (Ibrahim et al., 2017). However, in order to apply self-management for people with dementia, the target should focus on managing everyday life rather than managing the condition (Martin et al., 2013). A dyadic format of self-management could be appropriate in order for the person with dementia to be supported by a family member, as well as to apply the importance of relationship sustaining care, and in order to provide increased accessibility.

Some limitations need to be addressed in this review. A scoping review aims to provide an overall view of the research area and may therefore fail to include all relevant literature. We excluded care programmes and care management as they often involve multi-component interventions not described in detail, which leads to difficulties in reproducing the content of the intervention and in determination of joint participation. Some of the reviewed interventions did not explicitly state their objectives/goals, in those we identified sections in which some theory of impact for participants could be identified and might therefore not be the primary objective of the intervention. Outcome measures of the interventions were broad and difficult to compare among the studies. In order to summarise and obtain an overall view of the outcomes, the outcomes with related content were grouped and labelled. The significance of outcomes may be interpreted in different ways, and may therefore be considered when interpreting the findings. Another limit to this study was the exclusion of studies that not reported the proportion of couples/spouses in their sample (see for example Orrell et al., 2017). Considering that most participants in dyadic interventions are couples/spouses, some studies may have been overlooked. Additionally, our inclusion criteria of purely joint interventions excluded interventions with separate sessions for the members of the dyad. For example, in the study of Charlesworth et al. (2016), in which the majority of participants were couples/spouses, they combined joint and separate sessions and was therefore excluded. In this scoping review, we were interested in interventions where the couple participated together throughout the intervention and does not mean to insinuate that combinations of joint – and separate – sessions are always lacking a dyadic and/or relationship-focused approach.