Alzheimer's Society

If you are caring for a partner with dementia, there will be a great many changes in your relationship as time passes. These changes could affect your sex life and in some cases may be upsetting. This sheet explains how dementia can affect the sexual feelings and desires of people with dementia and their carers, and offers some ways of coping with this sensitive issue.

For most of us, our sex life is a very private matter. However much sex is discussed in the media and our world around us, many adults find it difficult to talk about their deepest sexual feelings to their partners - let alone anyone else. We are all sexual creatures, but what we do with that sexuality and how we choose to express it is another, very personal, story.

However, living with dementia brings all kinds of private issues into the public domain. By changing the way a person feels, and reducing their inhibitions, dementia can expose their private thoughts, feelings and behaviours - including those relating to sex.

Dementia does not necessarily have a negative effect on people's sex lives. Many couples find that they can still be close through their sexual relationship even when other means of expression have diminished. It may continue to be a rich source of mutual comfort and support and pleasure for many years to come.

Some carers find that when their partner is diagnosed with dementia, this answers some questions about some puzzling changes in their sex www.alzheimers.org.uk May 2006 514 If you are caring for a partner with dementia, there will be a great many changes in your relationship as time passes. These changes could affect your sex life and in some cases may be upsetting. This sheet explains how dementia can affect the sexual feelings and desires of people with dementia and their carers, and offers some ways of coping with this sensitive issue. lives. Once the dementia has been diagnosed, you can at least feel assured that these changes are not a reflection on you, and you may find it easier to make allowances for their behaviour. It's important to remember that any strange or uncharacteristic sexual behaviour is likely to be part of the dementia and is not directed at you personally.

Changes in feelings

As the 'control centre' for behaviour and emotion, the brain also determines sexual feelings. This means that in a person with dementia, sexual feelings can change unpredictably. Depending on which parts of the person's brain have been damaged, a person with dementia may experience:

• more interest in sex 
• less interest, including no interest, in sex 
• more or less ability to perform sexually 
• aggressive sexual expressions and demands.

All of these changes can leave partners feeling varying degrees of upset, loss, anger, anxiety or frustration. 

The onset of dementia doesn't have to mean the end of a happy sex life. But it can lead to some big changes. Above all, it's important to remember that there is no single 'normal' way of dealing with this very personal issue and that, whatever you are going through, other people around the country will be going through something similar.

Diminishing sexual interest

Many people with dementia seem to lose interest in sex at an early stage, and can become quite withdrawn. Being stroked or cuddled may give them reassurance, but they may no longer be able to initiate any affection themselves. Some carers feel content if this side of their relationship ceases as long as closeness and affection continue in other ways.

Sometimes people with dementia may passively accept sexual overtures without being very responsive. Some carers find this confusing, and may be left feeling guilty if it is not clear whether the person really wanted to have sex. This situation can raise some complicated ethical issues. If you have been in this situation, it may help you to talk these feelings through with someone.

Increased sexual demands

Some carers find that their partner's desire for sex has increased, sometimes resulting in unreasonable and exhausting demands, perhaps at odd times or inappropriate places. This can make it hard for the carer to show normal affection in case their partner mistakes it for a sexual overture.

Increased sexual demands can be particularly upsetting if at the same time your partner seems cold and detached. This could make you feel demeaned, or as though you are being used and treated as an object. These feelings will be even stronger if your partner forgets they have had sex immediately afterwards, or no longer recognises who you are. This can be very painful. If you have found yourself in this situation, do make sure you get some support.

Some people with dementia may become aggressive if their sexual demands are not met. If this happens, it's a good idea to keep safely out of their way until the mood has passed. Ask for advice from your GP or consultant if this happens frequently, or if you are concerned about it. Medication might be considered as a last resort, but it is likely that the person will become calmer as the dementia progresses.

Changes in carers' feelings

Carers describe a wide range of feelings about continuing a sexual relationship with their partner, ranging from pleasure that this is something that they can still share to confusion at being touched by someone who at times seems like a stranger. As the dementia progresses, the situation often changes, and so do the feelings of those involved. 

• Some carers find that the intimate tasks they have to perform for the person with dementia puts them off the idea of sex. 
• Many carers find it hard to enjoy a sexual relationship if many other aspects of the relationship have changed and little else is shared. This can make it feel that the sex has no meaning. 
• Some carers find that the dementia can make their partners clumsy or inconsiderate in bed, but because they love their partner and don't want to undermine their confidence, they have sex even though they don't want to. 
• Depending on how the dementia affects their relationship, some carers continue to sleep in the same bed as their partner while others choose to move to single beds or separate rooms.

All of these situations are complicated, and inevitably bring up a whole range of emotions. Carers often feel guilty about the way they feel. Talking to someone who understands the situation can be a huge weight off your shoulders.

Ways of coping with frustration

Particular problems can arise when one person wants to have sex and the other doesn't. However, it's important to remember that this situation can arise irrespective of dementia. When you're thinking about how to manage this situation, it can be useful to think about how you have managed it at other times in the past.

There are a number of ways to relieve pent-up sexual tension. Taking exercise and other energetic activities can help reduce the physical tension, as can masturbation. Sometimes, sexual desire can be confused with a need for closeness, touch, belonging, security, acceptance and warmth, or the need to feel prized by the other. Some people find that if they can meet these other needs, their desire for sex is reduced. For example, close platonic friendships can help meet some of the need for emotional intimacy, and therapies such as massage and reflexology involve physical contact and can be very relaxing.

Getting support

There are no ideal solutions to this complicated situation. Part of dealing with it may involve altering your expectations and making sure you have a rich and satisfying life in other areas. But what you can do is make sure that you have plenty of support to help you adjust to any changes. Consider talking through your feelings with the following: 

• friends and family. Choose to talk to someone who you feel might understand.
• your GP, social worker or community nurse. They may be able to explain why the dementia is affecting your partner's sexual behaviour in a particular way. 
• a carers' support group. Discuss how you feel with other carers, who may well be experiencing similar emotions. 
• a counsellor or therapist. You may be eligible for referral through your GP, or contact the British Association of Counsellors and Psychotherapists on 01788 578328 or online at http://www.counselling.org.uk/. The Alzheimer's Society information sheet  Counselling - how can it help? may also be helpful. 
• a helpline adviser on the Alzheimer's Society Dementia Helpline. England and Wales (8.30am - 6.30pm weekdays) 0845 300 0336; Northern Ireland (9.00am - 1.00pm and 2.00pm - 5.00pm weekdays) 028 9066 4100. 

Practicalities of sex in residential care

If your partner is in a residential, nursing or shared home, this does not need to mean an end to your sex life together. Talk to the manager about your need for private time together, and discuss how that can be available to you. Ask what training is available to staff about relationships. Other questions you might want to ask include: 

• Does the home have a 'sexuality policy'?
• What might happen if your partner becomes confused and shows affection or sexual feelings towards another service user?
• Do you have special needs that should be taken into consideration? 
• If you have a same-sex relationship, will your wishes for privacy be treated with equal respect to those in a heterosexual relationship?

Carers' advice sheet 514

Last updated: May 2006
Last reviewed: May 2006