Dementia and Sexuality: A Story of Continued Renegotiation

This article presents a new conceptual framework that shows how dementia may affect the sexual relationship between partners, and how different actors become progressively more involved in "managing" the sexual relationship during consecutive phases of dementia, that is, the premorbid, preclinical, and clinical phases. Each phase challenges couples in different ways and these challenges may affect the expression of sexuality in their relationship. The person living with dementia and/or the partner's desire to continue to be sexually active may result in conflicts with health care professionals and family members who want to protect the person living with dementia from becoming the perpetrator and/or the victim of "inappropriate" or "harming" sexual behavior. The framework posits that a diagnosis of dementia instigates a journey of renegotiating sexuality in which gradually more actors-who often approach sexuality from a sex-negative point of view-become involved. Therefore, the new framework starts from a sex-positive perspective and is presented together with a new research agenda that ensues from this framework. Research based on this framework that starts from the experience of both people living with dementia and their partners will help us to better understand the relational and sexual effects of a dementia diagnosis. This knowledge will enable health care professionals to provide tailored care with respect for the sexual needs of couples living with dementia. Hence, clinical implications arising from the framework are presented.