The impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples: a systematic review.

BACKGROUND: The impact of dementia on relationships, intimacy, and sexuality has been documented in later life couples. However, little is known about the experiences of couples living with younger-onset dementia. The aim of this systematic review was to analyze the literature describing the impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples. METHODS: A systematic literature search was conducted in July 2016 for relevant research papers. Five databases were searched: Web of Science, PsycINFO, MedLine, Scopus, and CINAHL. A quality appraisal checklist was used to assess the methodological quality of included studies. RESULTS: Eleven studies were identified that explored relationships, intimacy, and sexuality from the perspective of the spouse, the person with dementia or both members of the dyad. Several themes were identified including shifts in roles and responsibilities, declines in relationship quality, changes in identity, and self-esteem, increasing social isolation and loneliness, shifts in intimacy, and changes in sexual activity. CONCLUSIONS: Many of the reviewed studies were subject to a range of methodological issues including small sample sizes, small number of studies, and a reliance on the perspective of only one member of the dyad. Future research should follow couples longitudinally to gain a clearer picture of the impact of younger-onset dementia on the couple relationship over time. The inclusion of people living with younger-onset dementia in research will assist in developing a deeper understanding of the experiences of the individual and dyad.

The Impact of Dementia on Relationships, Intimacy, and Sexuality in Later Life Couples: An Integrative Qualitative Analysis of Existing Literature.

OBJECTIVES: The onset and progression of dementia can have a profound effect on the couple dyad. The aim of this systematic review was to analyze the literature investigating the impact of dementia on the relationships, intimacy, and sexuality in older couples. METHODS: A systematic literature search was conducted in May 2016 for relevant research articles. Five databases were searched: Web of Science, PsycINFO, MedLine, Scopus and CINAHL. The reference lists of articles included in the review were screened along with the reference list of other relevant reviews. RESULTS: Thirteen studies were identified that investigated relationships, intimacy, and sexuality from the perspective of the partner, the person with dementia or from the perspective of the couple jointly. The analysis revealed several themes including changes in responsibilities and roles, identity and self-esteem, affection, commitment, reciprocity, and sexual activity and satisfaction. CONCLUSION: The results strongly suggest dementia has a significant impact on the couple relationship. There is a dearth of research involving the perspective of the person with dementia or the couple jointly. Future research should investigate the impact of dementia on relationships, intimacy, and sexuality from the perspective of partners, the person with dementia, and the couple jointly to ensure the development of appropriate information and services that meet the needs of both people in the couple relationship. CLINICAL IMPLICATIONS: Clinicians should work closely with couples to develop tailored information and supports to assist couples in managing the multiple changes that occur in their relationship, intimacy, and sexuality due to dementia.

The Role of Elders in the Wellbeing of a Contemporary Australian Indigenous Community.

BACKGROUND AND OBJECTIVES: Traditional Elders are integral to the social structure of Australian Indigenous communities. Due to progressive loss of traditional way of life, however, the role of Elders has been eroding. This study aims to develop a conceptual model of the role of Elders in an Australian Indigenous community, with the goal of attaining strategies to strengthen the role of Elders. RESEARCH DESIGN AND METHODS: The study, conducted in a regional Indigenous community in Australia, adopted a community-based participatory approach. Design and focus of the project were informed by a community forum (Yarning Circle). One-on-one semistructured interviews and focus groups with community members were conducted by Indigenous researchers. Group concept mapping (GCM) was applied to elicit major themes in qualitative data, from the point of view of community members, and to derive a conceptual model of the role of Elders. RESULTS: Fifty members of the Indigenous community took part in interviews and focus groups. The participants' median age was 45 years (range 18-76 years); 31 (62%) were female. An additional 24 Indigenous community members took part in the data sorting task of GCM. GCM identified seven major aspects of the role of Elders, including Community relations, Passing down the knowledge, Dealing with racism and oppression, Building a better resourced community, Intergenerational connectedness, Safeguarding our identity, and Caring for our youth. DISCUSSION AND IMPLICATIONS: Elders fulfill many important roles in contemporary Indigenous communities. Our results can be used to assist the community to codesign a program to increase community wellbeing.