Between sexual assault and compassion: The experience of living with a spouse’s dementia-related hypersexuality—A narrative case-study

Abstract

Background Hypersexuality is one of the behavioral and psychological symptoms of dementia. This symptom can lead to poor quality of life for the person who lives with dementia, as well as for his or her caregiver, who might be exposed to sexual assault. Aim This study aimed to highlight the experience of an older woman living and coping with a spouse who exhibits dementia-related hypersexuality. Method A narrative case-study of a single case was designed, composed of four semi-structured interviews conducted over a 10-month period. The data were analyzed through thematic, structural, and performance analysis. Findings Four phases were revealed, depicting the experience of being a partner and caregiver of a spouse with dementia-related hypersexuality: a) “I need help”: A distress call; b) “It depends how long I agree to go on with it”: Living with the ambiguous reality of dementia-related hypersexual behavior within an ongoing intimate relationship; c) “It’s as if I’m hugging someone who’s no longer alive”: The transition from the previous couplehood identity to a new couplehood identity; and d) “I am just taking care of him as if he is a child”: A compassionate couplehood identity construction. Conclusions Living with a partner with dementia-related hypersexuality is a distressing experience for the caregiver-spouse. Yet, positive memories from a long intimate relationship can lead to the creation of a compassionate identity, which supports the caregiving process, and creates a sense of acceptance and meaning making. This, in turn, enables a positive aging experience. These finding have some practical implications for supporting and intervening in such cases.