Gray zones and sexlife in dementia

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.

Taboo and infidelity among spouses to someone with dementia 

By ELSE MARIE NYGAARD 23. March, 2012
Mens de internationale hjælpeorganisationer langt fra er parate til en krig mod Irak, så er internationale fredsvagter på plads i Irak. Her en amerikansk fredsvagt foran Aldorra-olieraffinaderiet nær Bagdad. (Foto: Nordfoto)

One woman’s letter about the difficult dilemma for Kristeligt Dagblad’s delivery box has elicited many reactions from readers who miss love as a result of the spouse’s dementia. Stock photo. Photo: Monkey Business Images

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.

So writes a man who is married to a woman with dementia. Today, his spouse is in a nursing home, and he has a girlfriend. The letter is one of many voices in a debate that was initiated by a reader in the paper Friday, March 16. “Am I the only unfaithful wife to a man in a nursing home?,” wrote a woman who is married to a man with dementia, to the letterbox Ask About Life. Since then, many readers responded and sent letters and mail to the mailbox with their positions and reports on the dilemma, as more people know from their own lives.
It is a relevant ethical dilemma, as there is no easy answer, but we welcome the debate that has occurred, says psychologist Annette Due Madsen, who together with her husband, psychiatrist Jørgen Due Madsen, is the editor of the letterbox Ask About Life.

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.

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5 thoughts on “Gray zones and sexlife in dementia

  1. Pingback: Gray zones and sexlife in dementia | racer2055's Blog

  2. Marriage is only a social contract made for specific purposes. The most important is to have children and raise them. Once a wife or a husband is affected by dementia it practically stop to function as a companion therefore if a person with a demented partner wish to find another he/she is totally free to do so. If people of that age decide to have another partner is for companionship rather than sexual reasons, at least in the case of normal people, Therefore what the person is choosing to have is basically a friend. It’s important to have an independent mind and be free from restrictions and taboos imposed by society or religion otherwise one is simply a slave of them.

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    • I agree with most of what you said, thanks for the comment. It’s a controversial topic, so it is apt that you comment, Controversialcook 🙂 I don’t think that having and raising children is the most important purpose of marriage, and I also don’t think that companionship stops with dementia. However, it is not uncommon that the spouse who does not have dementia begins to have unmet needs (companionship, meaningful relationships, intimacy, etc.). When this spouse takes a lover or another type of emotionally intimate companion, it can cause distress and tension in the family as well as in the spouse. Nearly everyone has an opinion on marriage and what “should” happen when one spouse is ill. It is also distressing if the spouse with dementia takes a new companion or lover while in the nursing home. I have heard many more people talk about this issue (how do I deal with my husband having a new girlfriend in the nursing home) than about the topic in this post. I think the important thing is that people find what works for them – not what they think others would expect of them. It’s not easy, it takes some soul-searching, and it’s important that they know they are not the only ones to ever have to figure this stuff out.
      As a side note, I want to stay away from the word “demented,” if we can 🙂

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      • Ahah.. Sorry about the word demented. English is not my mother language so i sometimes do such slips of the tongue. Sometimes they can be very funny and others totally inappropriate like in this case ^..^. But then what adjective should one use for a person with dementia?

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        • It’s alright, learning is growing! It’s more respectful to say person living with dementia, person with dementia, someone who has dementia, etc. They have it, they are living with it, but it does not take away that they are still a person (just like you wouldn’t say “cancered”). Thanks for asking!

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