Introduction Dementia is a devastating illness. The clinical criteria for dementia focus on cognitive and functional impairment. However patients' relationships are also affected, including their intimate and sexual relationships. These relationships are an important part of an adult life, particularly in young adults and are part of a person's identity and self-esteem. A great deal of research has explored the impact of late onset dementia on couples' relationships. This study aims to explore the impact of young onset dementia (YOD) on intimate and sexual relationships.
Objectives (a) To explore the lived experiences of couples with YOD with regard to their sexual and intimate relationships; (b) To explore any issues in this area and to report what these problems are (for both the partner and the pwYOD); (c) To identify strategies that couples have found helpful in maintaining a close sexual and intimate relationship where one person has a diagnosis of YOD; (d) To identify issues frequently raised by study participants (as well as strategies/actions that have helped to maintain a close relationship) and (e) Use these issues to inform the development of an appropriate future clinical intervention. Where enough data is available, to relate the findings to: (i) The severity of the pwYOD's illness; (ii) The type of dementia; (iii) Gender and (iv) The type of relationship the couple had before the pwYOD developed dementia.
Methods We are in the progress of interviewing patients and their partners, with the plan to recruit in total 10–20 individuals from 8–12 couples. We have completed five interviews with further interviews planned for the near future.
Interviews will be transcribed and thematically analysed. To date, interviews have highlighted important challenges and needs, including the setup of group, individual, and couple interventions.
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