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.

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.

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.

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.

It can be assumed that patients' participation in a phase I study will have an important impact on their partners' life. However, evaluation of partners' experiences while patients are undergoing experimental treatment and of their well-being after the patient's death is lacking. We aimed to explore partners' experience of patients' participation in phase I studies and to investigate their well-being after a patient's death.

This was an observational study conducted after the patient's death. Partners of deceased patients who had participated in a phase I study completed a questionnaire designed by us for experience evaluation and the Beck Depression Inventory for Primary Care, the Hospital Anxiety and Depression Scale, the Inventory of Traumatic Grief, and the RAND-36 Health Survey.

The median age of the 58 participating partners was 58 years (range: 51–65), and 67% was female. Partners reported negative effects on patients' quality of life, but only 5% of partners regretted patients' participation. Approximately two years after the patients' death, 19% of partners scored for depression, 36% for psychological distress, and 46% for complicated grief, and partners generally scored significantly lower on social and mental functioning compared to normative comparators.

Although partners reported negative consequences on patients' quality of life, most did not regret patients' participation in the phase I studies. Prevalence of depression, psychological distress, and complicated grief seemed important problems after a patient's death, and these must be considered when shaping further support for partners of patients participating in phase I trials.

The notion of person-centered care has been important in investigating relationships between people with dementia and paid carers, and measures are available to assess this. It has been suggested that person-centered care may be a useful construct to apply to understand family-care relationships. However, no measures of person-centered care in this context exist. The study aimed to develop an observational measure of person-centered care for this purpose.

First, a coding system incorporating a range of behaviors that could be considered person-centered or non-person-centered was constructed. Examples included a code relating to whether the person with dementia was involved in planning a task, and a code relating to how the spouse responded to confusion/distress. Second, 11 couples, where one partner had a dementia, were recruited and videotaped cooperating on an everyday task. The system was applied to the care-giving spouse's behaviors, labeling examples of behavior as person-centered or non-person-centered. The final step involved assessing the inter-rater reliability of the system.

The system captured nine categories of behavior, which were each divided into person-centered and non-person-centered types. The system had good reliability (Cohen's κ coefficients were: 0.65 for category and whether behaviors needed to be placed in a category; 0.81 for category excluding the decision about whether behaviors needed to be placed in a category; and 0.79 in relation to whether behaviors were person-centered or non-person-centered.)

Although the small sample size limits the implications of the results, the system is a promising quantitative measure of spousal person-centered care.

Bone-anchored hearing aid recipients experience well documented improvements in their audiometric performance and quality of life. While hearing aid recipients may understate their functional improvement, their partners may be more aware of such improvement. We sought to investigate patients' partners' perceptions of functional improvement following bone-anchored hearing aid fitting.

Surveys were sent to 153 patients who had received a bone-anchored hearing aid through the Nova Scotia bone-anchored hearing aid programme. The validated survey asked patients' partners to give their subjective impression of the bone-anchored hearing aid recipient's functional status.

Surveys were completed by 90 patients (58.8 per cent), of whom 72 reported having a partner. Partners reported a significant improvement in hearing (p ≤ 0.0001). Partners reported improvement in 87.0 per cent of functional scenarios, no change in 12.6 per cent, and a decline in 0.4 per cent. These findings demonstrate a significant improvement in the emotional and social effects of hearing impairment, as perceived by bone-anchored hearing aid recipients' partners.