This article comes from the Danish news source Kristeligt Dagblad (Christian Daily Paper). It’s about a particular gray zone in dementia care – the sex life of the spouse to someone with dementia. The original article is in Danish (you can access it by clicking on the title, below), and I have translated the article into English and edited the content to fit this blog.
I think it’s important to realize that the issue isn’t black and white and it isn’t just about sex or adultery. It’s about our very human need to connect with others, to share with others, and the emotional bond of companionship – all of which can also happen without sex. It is a similarly difficult issue when individuals with dementia find a new girl/boyfriend – they are acting on their emotional drive for closeness and attachment to others.
My social life changed over the years my wife’s dementia developed. There were fewer things we could do together. Our mutual friends, and even our children, held a little discreet, greater distance. I started thinking that I had three alternatives: suicide, become unstable/fragile, or divorce. So it was marvelous and a great stroke of luck came through a connection with an old girlfriend who had been divorced and found herself in an emotional vacuum, just as I did.
The letters show that more people have not had anyone to discuss these issues with. With her question, the woman pointed out some gray areas. The difficult, but necessary conversation about the issues related to living with a spouse with dementia will be updated many times in the coming years, when more people live longer with dementia, says Annette Due Madsen. Dementia is a widespread disease, which mainly affects people over 65 years old. Every year, around 15,000 new cases of dementia are diagnosed, and the disease is growing. The Health Protection Agency expects that by 2020 there will be over 100,000 with dementia in Denmark.
Spouses to the growing group of people with dementia are often caught in a difficult ethical situation, says chief medical doctor, Dr. Gunhild Waldemar, who is the center leader for the National Research Center for Dementia at Copenhagen University.
When a person with dementia moves in a nursing home, the healthy spouses often have delivered more than one would and should. When the person with dementia gets a place in nursing home care, the caregivers get a more free life. I think it is quite natural that the partner goes into a relationship with someone else and I would not call it adultery, said Gunhild Waldemar.
Anne Knudsen, dementia supervisor in the Danish Alzheimer’s Association who works in the association’s call in center, says that love and fidelity are still taboo topics in dementia. I meet relatives who confide in a relationship to another. Often they would like to hear me say that I think it is all right, but, at the same time, they have difficulty talking about it, says Anne Knudsen. Although dementia is a widespread disease, there is very little focus on what it is like to be married to a person with dementia, says psychologist Karen Skjøtt, the manager of the private treatment service The Dementia Contact in Helsinge, which is working with a number of municipalities in North Zealand.
The fact that a relative of a person with dementia has a relationship with someone else, I will not call adultery. In many cases, such a relationship may be a necessity because the situation can wear hard on the families. Although older adults may not play out their sex life in the same roles, they do miss the closeness and intimacy, and this is largely true with many relatives of someone with dementia, says Karen Skjøtt.