Dementia caregiving in spousal relationships: A dyadic perspective

Abstract

Objectives: The number of couples facing a dementia diagnosis for one partner of the spousal dyad increases. Spousal caregiving can be a highly stressful experience associated with negative caregiver outcomes such as depression and poorer immune function. However, surprisingly little is known about how the illness and the required care effects patient's well-being and relational changes experienced by afflicted couples. The aim of this study was to provide a literature review on how the dyadic perspective is taken into account and on how dementia effects both parts of the dyad. Methods: In order to outline findings about individual and dyadic well-being of affected couples, we conducted a literature search to review the three types of studies. First, studies focusing on one partner's perspective, usually the perspective of the caregiver; second, studies including the caregiver's and partially the care receiver's view; third, studies directly referring to both partners' perspectives. Results: The majority of studies neglect the individual with dementia by exclusively assessing caregiver variables or only indirectly including patients' characteristics. Very few studies embrace dyadic and relational variables to execute how both partners experience the illness, spousal caregiving, and changes in the relationship. Despite the arguable validity of self reports of individuals with dementia, some studies demonstrated the usefulness of including both partners' perspectives. Discussion: Results indicate the urgent need of integrating the perspective of the individual with dementia to improve the understanding of the effects of dementia caregiving. AbstractIn the next few years, an increasing number of older couples will have to face a dementia

Caregiver rating bias in mild cognitive impairment and mild Alzheimer's disease: impact of caregiver burden and depression on dyadic rating discrepancy across domains

“…Guidelines suggest interpreting severity of burden as follows: 61-88 as severe, 41-60 as moderate, 21-40 as weak, and scores under 21 as hardly at all (Braun et al, 2010). To assess depression in caregivers, we used the short form of the Allgemeine Depressionsskale (ADS-K; Hautzinger and Bailer, 1993), the German version of the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff, 1977).…”

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

“…It is possible that FCs' negative thoughts and feelings of burden could cause them to focus on their relatives' weaknesses, creating a vicious cycle in the family, during which the FCs' negative orientation lead to negative responses and actions from the PMD, exacerbating tension. Previous research has shown that good quality of daily relationships and positive reciprocal communication can promote FCs' wellbeing [31,45,46] and support the positive adjustment of PMDs. It has also been found that enhanced relationship quality can maintain better emotional wellbeing of both the PMD and the FC, which can lead to more positive experiences of living with a memory disorder [9] .…”

“…Issues relevant to family members' experiences that have been studied include changes in relations as well as caregivers' challenges, well-being, burden and coping mechanisms [8,[26][27][28][29] . Intrapersonal processes are usually of interest, and investigators highlight a need to understand the interpersonal and dyadic processes involved in giving and receiving care [30,31] . The challenge of living with memory disorders can be seen as a collaborative journey on which family members work together in response to their impact [32,33] .…”

‘Can't cook, won't cook’: men's involvement in cooking when their wives develop dementia

“…A study by Brittain et al (2010) explored how the social model of disability might be used to promote the citizenship of people with dementia, but whether their experiences of citizenship might also be gendered was not considered. Indeed, as research into the lived experience of dementia tends to explain the domestic lives of couples solely in terms of the illness, the possible influence of gender dynamics (past and present) on roles and responsibilities is given little consideration (for example, Braun et al 2009). Hence, there was a need for indepth research into how people with dementia -especially women -exercise agency within couple relationships, notably through their involvement in everyday decisionmaking processes.…”

“…Although previous studies examined the challenge that dementia poses to maintaining couple relationships (for example, O'Shaughnessy et al 2010), the authors did not consider whether gender inequality might continue to influence the agency that women with dementia exercise within their relationships, particularly in relation to the microaspects of their daily lives, such as domestic decision-making. Indeed, although research into couple relationships in dementia has frequently explored only the views of the carerspouses, this study examined the perspectives of both spouses (for example, O'Shaughnessy et al 2010, see also Braun et al 2009). …”