From loving husband to loving caregiver: the lived experience of intimacy and sexuality in the transition to caregiver for men who care for their female partner with dementia

Abstract

Dementia is a syndrome in which memory, thinking, behavior and the ability to perform everyday activities deteriorates. It is estimated that there were 47.5 million people living with dementia worldwide in 2016 and this number is projected to increase exponentially in the future. It has been suggested that informal family caregivers are the invisible and hidden backbone of health and long-term care systems in Canada. Spousal caregivers are often informal caregivers for their loved one with dementia. A diagnosis of dementia for one spouse has a major impact on all aspects of the marital relationship. Research has shown that satisfaction in sexual and intimate relationships increases the quality of life and overall health of older adults. A gap in the literature exists in understanding men’s experiences of sexuality and intimacy in their relationship with their wife with dementia. A qualitative phenomenological study was conducted to describe men’s lived experience of sexuality and intimacy in their relationship with their female spouse with dementia. Three men were interviewed and the essence of the lived experience is described as a transition from loving husband to loving caregiver. Two themes were developed to support this essence: 1) caregiver first and 2) a new form of intimacy. These themes are explored in detail with quotes from the men woven throughout. A discussion of these findings and comparison to current literature are presented as well as future recommendations for research and implications for practice.