Intimacy with Dementia: Is There a Time to Stop Having Sex?
The issue of expressed sexuality during dementia remains something of a taboo. Within residential settings the complexity of the topic is often compounded by the attitudes of caregivers or even the design and layout of the building. In this posting I fall back on just a couple of my own experiences to illustrate how, with sensitive management, it is possible for couples to maintain their physical relationship so long as they both appear content for this to happen.
I once worked in a nursing home for the elderly where a married couple was amongst the residents. Many of the younger caregivers appeared shocked by the fact they still had an active sex life. The husband had several physical problems resulting from chronic heart failure and a number of small strokes, and the wife had advanced Alzheimer’s disease.
At one level some of the caregivers simply had problems with the idea that anyone over the age of forty would want sex A bit like being unable to grasp the idea that your parents might have done "˜it’ when you were a child! However, the situation also revealed some very interesting issues that surrounded their prejudices.
Of particular concern was the fact that a loving relationship should include sex when the woman had dementia. They worried that the desire for sex was a form of male dominance, perhaps a non-consensual act in which the woman had no awareness to protest or way to articulate her concerns.
The head of the care home found herself in the center of controversy. She tried to act in both of their best interests by talking to the husband, their doctor, and speaking to the nurses most closely involved in their care to ensure that the wife was not being abused in any way. Rape can of course occur in marriage. The situation required a lot of sensitivity. The wife’s ability to communicate verbally was severely impaired by her late stage of Alzheimer’s.
It had to be decided on a non-verbal level whether she was being abused. Did she express distress or exhibit agitated behavior during or after sex? She had no history of distress, the current situation appeared settled, and the husband who appeared sensitive to concerns, assured staff that there were no problems. This combination of factors meant staff did try to be sensitive and diplomatic.
This was two decades ago. Then, as now, the basic human rights of disabled, sick and frail people may conflict with the caregiver in terms of the judgements they may have to make over the welfare of those in their care.
In contrast to the previous anecdote I have seen doctors intervene and stop visits when it was felt the patient, also with Alzheimer’s, was being abused by her partner who felt entitled to have sex.
Some nursing homes can, at worst, be de-humanizing and institutionalized in their philosophy of care. Lack of privacy is a major problem. In fairness, staff are often under huge pressure simply to meet the basic physical needs of their patients. This, coupled with low staffing numbers who may also be looking after patients with challenging behaviors, can lead to a situation where regimentation is most effective and interpersonal needs come second. It is not uncommon for caregivers to walk into a room and be met with an embarrassing situation.
What do we take from all this? Well, from my perspective one of the most important things to try and remember is that people with dementia, as with all people, are entitled to express their individuality which therefore must include their sexuality. However, as the severity of dementia symptoms increase, there is likely to be a point when the person is no longer considered to be acting with informed consent. It may be imperfect but I believe this point is reached when caregivers express concern based on their clinical observations of the person in their care, rather than the personal belief and attitudes of their colleagues.