#57: Intimacy and Dementia

Show notes: Special edition

CASE STUDIES

Intimacy and dementia

In this series of podcasts, we are exploring varies topics through case studies – and today we are looking at intimacy and dementia.

In this episode you will learn:

• Rights of elders when it comes to their intimacy needs
• The impact of dementia on intimacy
• Safety awareness and the barriers to intimacy in late life.

In this episode we’ll look at a case study of a couple and their need for intimacy in a residential care setting, with one of the parties experiencing dementia. Even today, this is not a subject that is discussed often, but it is an area we need to learn more about as there is an increased awareness about human rights of residential care residents despite changes in their health status.

Interestingly, when we talk about dementia and intimacy, it tends to focus on the inappropriate behaviours, and we can fail to acknowledge the actual need for intimacy and how to address that. In the last couple of years, the rights of those within aged care settings have significantly changed, so much so that a person from outside can come in and have intimate relations with a resident so long as there is consent, they know the person and the resident has the capacity to make that decision. I know that a number of aged care homes also allow sex workers to visit. We can’t say who can and cannot have intimate relations with another person, unless there is a lack of consent.

The story I am sharing centres around a couple I knew a few years ago, who have both since passed away. This beautiful couple moved into residential aged care after they had a car accident and the wife could no longer walk and was experiencing dementia. She needed residential care due to her support needs, while the husband moved to a nearby low-care facility as he was able to walk and he didn’t have memory changes. The wife was saying to me that she was missing the intimacy and felt her husband didn’t love her anymore as they were unable to be intimate. She had limited insight into where she lived, she knew who her husband was and presented well, but didn’t really understand why they couldn’t be living together in the same room.

‘When it comes to intimacy and dementia, you might notice changes in intimate and sexual expression. The person living with dementia may seem demanding or insensitive to others, feel more or less need for sexual expression and intimacy, and display sexual behaviours in inappropriate social context.’

For this lady, she was not expressing inappropriate behaviors but she did feel the need to be intimate with her husband. Just to add some context, for many elders living in residential care when they talk about making love they can mean just laying together and cuddling, so it is interesting to note what that terminology can mean in later life. But with this lady in the case study, she really wanted intimacy with her husband and was quite upset that she couldn’t due to her physical restrictions and the barriers she faced. When I think about some of the barriers in aged care settings, stereotypes and agism, staff attitudes, lack of privacy, family attitudes, lack of partner,  and the attitudes of other residents all come to mind.

For this couple, they were allowed to do what they wanted to do, because they were both adults, they were married, and there was no issues about the wife’s choice of partner. There was some elements about her consent and awareness, but she was quite clear about what she wanted. So there was no need to seek permission, they were just given the space. For her, cuddling with her husband was very reassuring, especially after the car accident which was quite frightening. Although they lived apart, he was able to visit, and while we won’t explore whether they did the deed, she became much calmer once she was told her room was her environment and she had the right to do what she wished in there.

When we talk about intimacy and dementia, topics around being aware and consenting are often raised. In the case of my lovely couple, it was something they both wanted to, so there really wasn’t any barriers other than her mobility.

For those without partners who wish to express their needs, they may wish to talk to families about the possibility of sex workers. Or if an elder meet someone within the aged care setting and both are consenting, they have the right to do what they wish in the privacy of their rooms.

There is a really good book and resource on the topic written by Gail Doll and it covers a lot about sexual behaviours of those with dementia. It also talks about environment, health and safety, staff and family attitudes, and lesbian, gay and transgender relations too. This is a good resource to explore, it is quite practical, giving examples on how you might address some of these things and divert inappropriate behavious if they happen.

When a person has more advanced changes in their brain in later life that might be masturbating in public, using sexualized language, undressing, might become aggressive or request excessive genital care. It’s important to know the policies and where you can escalate concerns.

I was referred once to an older man who was masturbating in his shared room, and it was suggested he needed psychological help and even medication. He didn’t need any of those things, just the space to do what he wanted to do in private. It’s important to look objectively at sexual behaviours in a residential care setting and be mindful whether they are hurting others, or if the elder involved is simply exercising a right.

Resources:

Sexuality and Long-Term Care, by Gail Appel Doll