While early diagnosis of younger-onset dementia (YOD) is crucial in terms of accessing appropriate services and future planning, diagnostic delays are common. This study aims to identify predictors of delay to diagnosis in a large sample of people with YOD and to investigate the impact of a specialist YOD service on this time to diagnosis.

A retrospective cross-sectional study.

The inpatient unit of a tertiary neuropsychiatry service in metropolitan Victoria, Australia.

People diagnosed with a YOD.

We investigated the following predictors using general linear modeling: demographics including sex and location, age at onset, dementia type, cognition, psychiatric diagnosis, and number of services consulted with prior to diagnosis.

A total of 242 inpatients were included. The mean time to diagnosis was 3.4 years. Significant predictors of delay included younger age at onset, dementia type other than Alzheimer’s disease (AD) and behavioral-variant frontotemporal dementia (bvFTD), and increased number of services consulted. These predictors individually led to an increased diagnostic delay of approximately 19 days, 5 months, and 6 months, respectively. A specialized YOD service reduced time to diagnosis by 12 months.

We found that younger age at onset, having a dementia which was not the most commonly occurring AD or bvFTD, and increasing number of services were significant predictors of diagnostic delay. A novel result was that a specialist YOD service may decrease diagnostic delay, highlighting the importance of such as service in reducing time to diagnosis as well as providing post-diagnostic support.

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.