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We Need to Talk About Sex and Dementia

Dr Karen Harrison-Dening , Head of Research and Publications, at Dementia UK

Dementia can result in a range of behavioural changes, which can make it challenging for partners to maintain personal as well as intimate relationships.

These changes can include the person with dementia becoming hypersexualized or even indifferent about engaging in any sexual activities. Conversely their partner may also find it difficult responding to these changes.

But where do people go to get this kind of support and how do we talk about it more openly, comfortably and confidently? Family members and friends, and even healthcare professionals, often see this as a conversational stumbling block.

With incidences of dementia rising, we need to ensure that this topic is no longer seen as taboo. This can only be solved through clear and open communication amongst families, healthcare professionals and wider society.

How do we start this conversation?

We need to advocate more that everyone should be entitled to the best quality of life possible, regardless of whether they have dementia or not. Relationships form a huge part of this and we need to stress that people with dementia and their partners should be entitled to these (in response to their needs, rights and wishes). 

When talking about sex and intimacy in dementia, we tend to gear the conversation towards the person who has been diagnosed or we may simply just look to the carer. It’s important to maintain an inclusive and relationship-centred view which can help to open up conversations around this issue. 

Who should be part of this conversation?

Health and social care services must ensure that the advice and support they offer is available to people in all kinds of relationships and of different sexual preferences. Admiral Nurses, as specialist dementia nurses, can play an important role as they offer tailored advice and support to each family they work with. They can often provide a listening ear to families who are starting to have initial concerns around sex and intimacy, ultimately before it reaches a crisis point.

Nevertheless, it is important for families and healthcare professionals to acknowledge the following points:

  • Any relationship changes can be talked through with someone they can trust. This could be a friend, a GP or an Admiral Nurse
  • There are different ways of being intimate outside of sex, such as massaging or cuddling
  • A partner’s decision should be respected if they are less interested in sex and/or intimacy
  • Consent can fluctuate and just because someone has consented on one occasion does not mean that they will consent on the next
  • Acknowledge that relationships are inherently different and one piece of advice, whilst suitable for one relationship, may not be suitable for another 

How do we continue this conversation?

In the same way that mental health and death have become more widely talked about, the same should be true for sex and intimacy in dementia.

Everyone should be able to have healthy relationships for as long as possible and healthcare professionals play a key role in supporting this to happen. It’s essential that we stop seeing sex and dementia as a ‘difficult topic’ but something that can be approached open-mindedly to allow families with dementia to continue living happy and fulfilling lives.

Anyone with questions or concerns around sex and intimacy in dementia, or dementia more generally, can visit our website at dementiauk.org or ring our Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. You can also r download the full Dementia UK Sex and Intimacy leaflet here.

 

About Dementia UK

  • Dementia UK provides specialist dementia support for families through Admiral Nurses.
  • If you need advice or support on living with dementia contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. The Helpline is staffed by experienced Admiral Nurses, who give vital support by telephone or email.

 

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