COuple Sexuality in Young onset dementia (COSY)
Research type
Research Study
Full title
Exploring the Impact of Young Onset Dementia on Sexual and Intimate Relationships: a Qualitative Study
IRAS ID
147599
Contact name
Zuzana Walker
Contact email
Sponsor organisation
North Essex Partnership NHS Foundation Trust
Research summary
Dementia is an illness that is life-changing for someone of any age, but it can be particularly devastating for patients who develop the disease early. People who are diagnosed with/show symptoms of dementia under the age of 65 are described as having ‘Young Onset Dementia’ (YOD). Although the symptoms of dementia are similar between younger and older people, the psycho-social impact of the disease is likely to be different between these groups. People can be diagnosed with YOD as early as in their 40s; as such they may have family responsibilities, employment and a mortgage/rent to pay. In every other way, they might be a young and healthy person. A diagnosis of YOD also impacts on the relationship with their partner. Thus, YOD is increasingly recognised as an important clinical, psychological and social problem (Williams, Barrett, & Muth, 1997). This study recognises that when someone is diagnosed with YOD, it is not just their memory and various abilities which are impacted, but other aspects of their lives, including their intimate and sexual relationships. Sexual and intimate relationships are part of adult life, and form part of everybody’s identity, so a change in a person’s sexual and intimate relationships can have a detrimental effect on their sense of self and quality of life.
Despite research studies previously exploring the sexual relationships in people with late-onset dementia (>65); sexual relationships of couples affected by YOD is an underexplored area (with very few studies touching on this topic; Lockeridge & Simpson, 2012 / Harris & Keady, 2009), and we cannot assume that research findings from patients over 65 can be generalised to younger age groups. This study aims to explore the sexual relationships of people affected by YOD to identify the following: key themes, commonalities, areas of support needed and intimate personal experiences.
REC name
London - Bromley Research Ethics Committee
REC reference
14/LO/1057
Date of REC Opinion
25 Jun 2014
REC opinion
Favourable Opinion