Almost all people with dementia exhibit behavioral changes during the course of their illness, such as restlessness, indifference, or hallucinations. Some affected individuals also experience “sexual disinhibition.” According to a study, this is particularly stressful for family caregivers and increases their desire to move into a nursing home.
Previous studies assume that between 15 and 18 percent of people with dementia exhibit sexually disinhibited behavior. Kimberly R. Chapman and her colleagues wanted to find out how such behavior affects caregivers and their desire for a transition to a nursing home. According to the researchers, previous studies have already proven a link between behavioral problems in people with dementia and the burden on caregivers. However, the impact of sexual disinhibition on family members in particular has so far been hardly researched. This is despite caregivers typically being more burdened by such behavior than professional caregivers, partly due to social stigma and partly because they are less prepared for it than trained professionals.
Sexual disinhibition is difficult to assess
For their study, the researchers surveyed 620 family caregivers whom they contacted through various social media groups. The participants were, on average, 56 years old, educated (92 percent had at least 12 years of education), and almost exclusively female (94.5 percent). On average, they stated that they provided approximately 80 percent of the care for the family member with dementia.
While Chapman and her colleagues could rely on established survey instruments regarding the care burden, the occurrence of sexual disinhibition was more difficult to assess. They opted for a two-pronged approach: Participants were first asked if their family member with dementia had made sexually offensive or abusive remarks or exhibited sexually offensive or abusive behavior within the previous two weeks. They were also asked to indicate the frequency on a scale from 1 (never) to 7 (several times per hour). Additionally, they could describe any behavior they found socially inappropriate and/or embarrassing in a free-text field. 16.5 percent of respondents reported sexually offensive or abusive remarks, and 11.1 percent reported corresponding behavior. 7.6 percent mentioned sexually disinhibited behavior in the free-text field.
Uniform assessment procedure necessary
The study's results show that sexually disinhibited behavior in people with dementia has a greater impact on the burden of family caregivers than other behavioral abnormalities. It also intensifies family members“ desire to move those affected into nursing homes. According to the authors, this clearly demonstrates the significant importance of this specific behavioral abnormality in relation to caregiving burden. They therefore call for a standardized assessment procedure, a ”gold standard procedure," to determine the occurrence and severity of sexual disinhibition, as well as the shame or embarrassment that relatives may experience. In addition, further research and activities are needed to support relatives in this difficult area. Corresponding offerings should promote a better understanding of sexually disinhibited behavior in order to reduce shame and stigma.
The authors mention several limitations of their study, including online recruitment via social media, which may have attracted participants who were already comparatively burdened. Furthermore, the dementia diagnoses were solely reported by relatives, without medical confirmation. Chapman and her colleagues also see a limitation in the lack of diversity among respondents: they were predominantly educated, female, and white. The researchers therefore recommend further research on the topic with a more diverse group of participants.
A summary of the study can be found here:
The Role of Sexual Disinhibition in Predicting Caregiver Burden and Desire for Institutionalization Among Family Dementia Caregivers (June 2019)
