An elderly relative of mine recently needed to spend some time in a nursing home, and I was enlisted to find a suitable establishment. I eventually succeeded, but only after much difficulty. Demand for places in these homes significantly exceeds supply. This demand will greatly increase in the future. Birth rates have dropped dramatically in Ireland, people are living longer, the elderly fraction of the population will grow considerably, and the concept of extended family is in decline.
Many of us will eventually live in nursing homes where up to 60 per cent of us will suffer from dementia. What quality of life have we the right to expect there? What support should we expect there for our emotional lives, specifically for romance and for sex, particularly if we develop dementia? I was spurred to think of this important issue in medical ethics when I recently read an article by Athena McLean, an anthropologist at the Philadelphia Geriatric Centre.
McLean tells the true story of Carl and Vicki, residents in an American nursing home, to illustrate the current situation. Carl was in his early 80s and Vicki was nearly 70. Both suffered from dementia, a progressive condition characterised by loss of short-term memory, disorganisation and confusion. Carl and Vicki were romantically attached to each other and would stroll hand-in-hand through the dementia ward.
Carl was married, but his wife lived independently in an apartment. She had cut off contact with Carl on the occasion of a previous romantic attachment he made in the nursing home. Carl referred to Vicki as his wife. Vicki was a widow, she rarely spoke and the staff reckoned she thought Carl was her husband. Before her husband died, he and Vicki also had the habit of walking hand-in-hand.
Relatives of some of the residents in the nursing home hire personal companions who visit and help the elderly residents. One such helper was Mary. One evening when her work was done, she noticed Carl and Vicki strolling as usual. They both entered Carl's room and closed the door. Mary was concerned and after several minutes she opened the door to behold, in her eyes, an appalling scene. Carl and Vicki were performing a sexual act. Mary ordered Carl to pull up his trousers, and scolded the pair. Carl yelled at Mary to leave them alone. Mary reported the incident to the staff.
Based on Mary's report, the head nurse categorised Carl's behaviour as "agitated" and sent a report to the state. Carl, the less impaired of the two, was seen by staff as the initiator of the act. In the subsequent investigation, the major issue was whether Vicki had provided informed consent to the sexual act.
It was decided to treat Carl's conduct with behaviour therapy. He was repeatedly shown photographs of his wife to reinforce that she, not Vicki, was his real wife. Next they treated Carl with anti-psychotic and tranquilliser medication for his agitation, and an anti-convulsant to reduce "disinhibited" behaviour. However, despite this treatment Carl remained attached to Vicki and reacted badly to attempts to keep them apart.
It was decided to separate the pair permanently. Vicki was relocated to another floor and Carl remained in the dementia unit. Vicki became withdrawn and aggressive and was placed on medication to make her more manageable. Carl remained distressed, but came back to himself after a while, when he started to make friendly advances towards other women in his ward. Neither Carl or Vicki again formed a relationship with another like the one they had shared.
The general practice in nursing homes in deciding how much attention to pay to residents' desires and wishes is to place a high value on cognitive capacity, i.e. the ability to reason, and awareness of identity and surroundings.
Medical ethics considers that every healthy adult is endowed with a moral agency that makes decisions and exhibits a consistent pattern of behaviour over time and across shifting contexts. In this model, changes in behaviour that are inconsistent with one's past pattern are evidence of pathology. Carl's feelings for Vicki are seen as disinhibition rather than as affection, and Carl and Vicki's affection and sexual desire are seen as products of pathology, outside their moral agency.
McLean argues persuasively that the medical model is an inappropriate tool for evaluating the behaviour and wishes of elderly people suffering from dementia. They may be unable to recall past events but usually can form meaningful relationships because "semantic memory" (words and meanings) remains intact. This memory enables people to give meaning to present experience, unrelated to personal history. Although cognitive memory is compromised in dementia, emotional memory may remain relatively intact. Victims of dementia are able to connect faces with feelings far longer than they can grasp relevant facts. People who suffer from dementia may show behaviours that diverge from the norm for their age-group or from their own past behaviour. These behaviours may appear alien to family and friends. However, McLean argues that these new behaviours may be new possibilities that help to ease the terrors of the isolation and fragmentation of dementia.
William Reville is a senior lecturer in biochemistry at UCC