Sex and dementia
Dementia causes many changes in people's lives. One area in which there are often changes, but which is seldom discussed, is that of sex and intimate relationships. This factsheet explains how dementia can affect the sexual feelings, desires and needs of people with dementia and their partners. It outlines some of the ways in which sexual behaviour can change and suggests some ways for those with partners to deal with these changes. It highlights some practical issues, and discusses forming new relationships and issues around consent.
Everyone has the right to express their sexuality without fear of judgement. This is no less the case for people with dementia.
Intimate relationships can take many different forms and sex is not important for everyone. Over time, some partners develop forms of physical intimacy, such as touching, that do not correspond with what they had previously thought of as 'sex'. By keeping an open mind about what 'sex' and 'intimacy' mean for you and your partner, you will be well placed to focus on the pleasurable aspects of your relationship and less worried by the rest.
The onset of dementia certainly doesn't have to mean the end of a happy sex life. It can lead to some big changes, but then all relationships change over time. Many couples find that they can still be close through their sexual relationship even when other means of expression have diminished, while others find that they come to discover different ways of sharing closeness, comfort and intimacy.
Some people find that when they, or their partner, are diagnosed with dementia, this answers some questions about puzzling changes in their sex lives. Once dementia has been diagnosed, you can at least feel assured that these changes are not a reflection on either of you, and you may find it easier to understand what is happening.
For many couples coping with dementia, physical intimacy continues to be a rich source of mutual comfort, support and pleasure for many years. Where sexual difficulties do arise, it's important to remember that there is no single 'normal' way of dealing with this very personal issue. While it may be a difficult issue to raise, you might find it helpful to talk to someone you trust. If you feel comfortable doing so, you may wish to talk to a good friend or raise the issue in a carer's support group to see how others in a similar situation have dealt with these issues.
Adapting to changes in the person with dementia
As the 'control centre' for behaviour and emotion, the brain is in charge of sexual feelings and inhibitions. 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, and what medication they are taking, a person with dementia may (but may not) experience any of the following:
- more interest in sex
- less interest, or no interest, in sex
- more or less ability to perform sexually
- changes in sexual 'manners' - for example, appearing less sensitive to the other person's needs or appearing sexually aggressive
- changes in levels of inhibitions (the person may do or say things that they would not have done previously).
Some couples feel able to adapt to these changes relatively easily, but sometimes one or both partners may feel varying degrees of upset, loss, anger, embarrassment, anxiety or frustration.
Reduced sexual interest
Some people with dementia seem to lose interest in sex at an early stage, and can become quite withdrawn. (This can also be true of their partners - see 'Adapting to changes in partners', below.) Being stroked, hugged or cuddled may give them reassurance, but they may no longer be able to initiate any affection themselves. Some people feel content if this side of their relationship ceases, as long as closeness and affection continue in other ways. Where partners no longer share a bed, some people with dementia find it comforting to have something to cuddle, such as a soft toy or hot water bottle.
Where one person does become less interested in sex than their partner, they may feel guilty. It is important for the other person to respect that choice, and perhaps to find other ways to maintain their intimacy as a couple, as well as an outlet for their own sexual frustration (see 'Ways of coping with frustration', below).
Increased sexual interest
Some people with dementia find that their desire for sex increases. Some partners find this a welcome change, while others feel unable to meet the level of sexual demand. Where this is the case, it can be difficult for the person with dementia. In this situation, some partners have said they feel wary of showing normal affection in case it is mistaken for a sexual advance. If the level of sexual demand feels overwhelming, it can be helpful to find something else to do together that can meet the other person's need for intimacy, rather than making an outright refusal.
Some people with dementia may become aggressive if their sexual demands are not met. This behaviour is likely to stem from the person's feelings and interpretation of the situation, and so a considered way of turning down sexual demands (ie one that acknowledges their needs, is respectful and does not hurt their feelings) may help prevent aggression. In some cases it may be 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. If you feel that you or another person is in danger then do not hesitate to seek help. If the person is behaving in a way that distresses care workers when they are providing personal care - for example, when they are providing help with washing - family members can become embarrassed and may feel they should stop employing outside help. It is important that families share these concerns with the care workers or with a care professional, who may be able to make suggestions about the ways such help and support are provided.
Challenging sexual behaviour
Although for many couples sexual relations will carry on as normal, some people say that a partner with dementia can appear cold and detached during sex. Alternatively, the person might forget they have had sex immediately afterwards, or no longer appear to recognise who their partner is. These situations can be upsetting and painful for partners.
If the person mistakes someone else for their partner, try to approach the situation in a way that maintains their dignity as much as possible. Try not to make accusations or react in a horrified way but instead talk to them calmly in private. This reduces the potential for the person to feel embarrassed or distressed.
In rare cases, some people with dementia may go through a phase of being sexually aggressive - making repeated demands for sex from their partner or other people. In extreme cases, particularly if the person with dementia is a strong person, the level or threat of physical force may be difficult to manage. For some people this behaviour may be part of a long history of aggression, which may be made worse by the dementia.
It is important to try not to take the person's behaviour personally. Remember that it is caused by the illness, rather than the person. However, partners and carers must look after their own safety. If either person finds themselves agreeing to sex when they would rather not, or feels that they are at risk of violence, aggression or verbal abuse, it is important to talk to the GP or consultant, or phone Alzheimer's Society's National Dementia Helpline for confidential advice (0300 222 11 22).
Changes in levels of inhibitions
For most people, sex is a very private matter and many people find it difficult to talk about their sexual feelings to their partners - let alone anyone else. However, living with dementia brings all kinds of private issues into the public arena.
Dementia can reduce a person's inhibitions, which may expose their private thoughts, feelings and behaviours - including those relating to sex. Sometimes a person with dementia may appear to lose their inhibitions and make sexual advances to others or undress or touch themselves in public. They may use language that people have never heard them use before and which seems very out of character.
These situations may be embarrassing for those close to the person, but they may also be very confusing, distressing or frustrating for the person themselves - especially if they cannot understand why their behaviour is considered inappropriate. This kind of behaviour rarely involves sexual arousal. Sometimes what appears to be sexual is actually an indication of something quite different, such as:
- needing to use the toilet
- discomfort caused by itchy or tight clothes or feeling too hot
- boredom or agitation
- expressing a need to be touched, or for affection
- misunderstanding other people's needs or behaviour
- mistaking someone for their current (or previous) partner.
Some people will find that they want to protect the person with dementia from others laughing at them or from being shocked by their behaviour. They may ask certain people, such as their grandchildren, not to visit. If you think this is necessary, discuss it with another person first and review the decision later on as the situation may change over time.
Adapting to changes in partners
The partners of people with dementia describe a wide range of feelings about their continuing sexual relationships, ranging from pleasure that sex is something that they can still share to confusion at being touched by someone who at times seems like a stranger.
As dementia progresses, the situation often changes, and so may the feelings of those involved.
- Partners' feelings may not change towards the person they are caring for at all - they may find that they can connect with their partner through sex even if they are finding it difficult to communicate in other ways.
- Some partners who are carers feel exhausted by their caring responsibilities and don't feel they have the energy to enjoy sex. This can be frustrating for their partner.
- Some partners find that the intimate tasks they have to perform for the person with dementia can put them off the idea of sex. This can make a person with dementia feel they have lost their dignity and may affect how they feel about themselves and their partner.
- Many people 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. If this is the case, it's important to give the partner with dementia plenty of reassurance and affection in whatever ways feel appropriate.
- Some people feel that the dementia can make their partners clumsy or inconsiderate in bed. If this is the case, partners need to be proactive in finding new ways to be intimate together - whether or not this involves sex.
- Depending on how the dementia affects their relationship, some partners continue to sleep in the same bed as their partner while others choose to move to single beds or separate rooms. If a partner does decide to move rooms, this can be disorienting or distressing for the person with dementia, so it's important to discuss this with a GP, community nurse or support worker. Practical issues, such as knowing when the person has got up in the night, may be helped by certain aids such as sensors (see factsheet 437, Assistive technology - devices to help with everyday living).
Ways of coping with frustration
In any relationship, problems can arise when one person wants to have sex and the other doesn't. This is a situation that most people in long-term relationships go through at one time or another and it's important to remember that it can arise even when dementia is not involved. If this does happen, try to remember that it is normal, and look for realistic, practical solutions, as well as finding someone to talk to if you feel this might be helpful.
Single people also have sexual needs and may become frustrated when these are not met. This is perfectly normal and a person should not be judged for having such feelings. If you are arranging the personal or household care for someone who is living alone you may want to talk regularly with the care worker to see if there is anything that they are finding difficult. For a variety of reasons the care worker may find inappropriate behaviour difficult to mention, but it is important to know about their experiences.
There are a number of ways to relieve pent-up sexual tension - for example, 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 special to another person. Some people find that if these other needs are met, their desire for sex is reduced. For example, close platonic friendships can help to meet some of the need for emotional intimacy and therapies, such as massage and reflexology, involve physical contact and can be very relaxing.
Practicalities of sex in care homes
If you or your partner are in a residential, nursing or shared home, this does not need to mean an end to your sex life together. Talk to the manager or key worker about your need for private time together and discuss how that can be made 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 a resident becomes confused and shows affection or sexual feelings towards another resident or staff member?
- If you have a same-sex relationship, will your wishes for privacy be treated with equal respect to those in a heterosexual relationship?
If you are in a same-sex relationship ask to see the home's equal opportunities policy or ask about staff training - care homes are now required to train staff on working with lesbian and gay people. Every home should also have an anti-discrimination policy and you can ask for evidence that the policy has been put into practice.
Forming new relationships
Just because someone has dementia does not mean that they are incapable of forming new and intimate relationships. Family, and especially the children of people with dementia, can often feel uncomfortable in recognising that the person may still have sexual needs, or find it difficult if the person finds a new partner who appears to be taking the place of a parent who has died. However, if the person wants to pursue the relationship and is not at any risk of harm as a result, family and friends should try not to interfere.
Difficulties can arise at times. For example, it may appear that the person with dementia is being exploited or 'groomed' so people can take advantage of them. This can occur in residential settings or when the person is living in the community. For example, the person may build up a relationship with someone who is actually trying to make them part with their money.
As long as the person with dementia has the mental capacity (ability) to make decisions about their life (see 'Capacity to consent to sexual relations') then it is important to respect their decisions.
Sometimes relationships break down between people with dementia and their partners. Some partners will opt to continue caring for a person even if their relationship has ended. This situation may be relatively simple for people to accept, or it may lead to conflict and distress for both parties, and for their families. It's important that both parties seek support and have an opportunity to talk about what they are feeling. You may wish to contact Alzheimer's Society's National Dementia Helpline or Relate, a voluntary group that offers confidential relationship counselling and advice (see 'Useful organisations' for details). Alternatively your GP surgery may have a counselling service.
Capacity to consent (agree) to sexual relations
By law, both parties must always consent to sexual relations. A person consents if she or he agrees by choice and has the freedom and capacity to make that choice. When someone has dementia, it is sometimes unclear whether they have the 'mental capacity' to consent to sexual relations.
In England and Wales people are said to be able to make decisions for themselves if they are able to do the following:
- understand information that is given to them
- retain that information long enough to be able to make a decision
- weigh up the information available to make a decision
- communicate their decision - by any possible means, such as talking, using sign language or even simple muscle movements such as blinking an eye or squeezing a hand.
Northern Ireland has different laws around capacity. For more information contact Alzheimer's Society's National Dementia Helpline on 0300 222 11 22.
Sometimes, someone with dementia may seem to passively accept sexual overtures without being very responsive. Some partners find this confusing, and may be left feeling guilty if it is not clear whether the person really wanted to have sex, while others find it normal to continue having sex as before. This situation can raise some complicated ethical as well as legal issues, such as whether or not the person with dementia has the mental capacity to consent to sexual relations. If the person cannot express their wishes, it is important to learn to recognise non-verbal signs and to stop at any sign of reluctance. At other times, the person with dementia may be insensitive to the needs of the person they want to have sex with (see 'Challenging sexual behaviour' section above) and it is the partner who needs to show that they do not consent.
Simply having a diagnosis of dementia does not mean that someone does not have the mental capacity to make their own decisions and to understand the implications of those decisions. However, the ability of a person to understand the implications of a decision may vary from occasion to occasion. It is important to consider whether the person with dementia has the ability to recognise who the other person is and, most importantly, whether they have the ability to say no or to express their wishes in other ways.
(For more information about mental capacity, see factsheet 460, Mental Capacity Act 2005.)
What to do in cases of suspected abuse
If you are concerned that you, your partner, or someone you know is at risk of any form of abuse, whether emotional or physical, it is important to share these concerns. Sexual abuse is a criminal offence, and in cases of abuse the local authority or police may need to intervene to protect the person. While sexual abuse might seem to have to involve violence or force, it can also take the form of making a person watch or participate in activities, such as watching pornography. Talk to a professional such as the GP or a community nurse if you are concerned. Initially, you may find it helpful to talk in confidence to Alzheimer's Society's National Dementia Helpline or Action on Elder Abuse to discuss what to do.
If you do decide to talk to professionals about matters that will disclose information about the sex life of someone with dementia or their partner, you must respect the dignity and privacy of both parties. The professionals involved need to consider whether both parties are:
- comfortable in the relationship
- not being exploited or taken advantage of
- acting in a way that is in keeping with their values
- able to consent to the relationship.
Maintaining a healthy relationship
Living with dementia can put a strain on relationships, both for the person with dementia and for their partner, particularly if they are in the early stages of dementia. However, there is much you can do to keep a relationship positive. Spending time apart socialising, or following satisfying or creative pursuits can boost each partner's self-esteem and give them something to share with the other. Taking part in activities as a couple or a family unit, such as putting together photo albums, joining a local group, or going on day trips, can also help people focus on the positive aspects of the relationship.
It is also important that you both have plenty of support to help you adjust to any changes. If you are worried or upset by something, discussing your feelings and concerns with someone who understands can often help.
Consider talking your feelings through with:
- 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 causing particular changes to you or your partner.
- A counsellor or therapist - you and/or your partner may be eligible for referral through your GP, or contact the British Association for Counselling and Psychotherapy (see 'Useful organisations', below). See also factsheet 445, Talking therapies (including counselling, psychotherapy and CBT).
- A helpline adviser - Alzheimer's Society's National Dementia Helpline (0300 222 11 22) can provide information and advice as well as pointing you towards other organisations that could help. The helpline advisers offer support to all people with dementia and carers, including lesbian, gay, bisexual or transgender (LGBT) people.
- A carers' support group - if you are the carer of someone with dementia, you may find it helpful to discuss how you feel with other carers, who may well be experiencing similar emotions. In some areas, carers' centres also offer opportunities to talk to someone in private. Details of local groups are available from Alzheimer's Society's National Dementia Helpline (see the end of this factsheet for details).
Some health problems and medications can affect sexual pleasure and performance. If either partner has joint pain or arthritis their local physiotherapy department should be able to suggest ways to make sex more comfortable. If either partner has recently had an operation or had a heart attack it is a good idea to wait to be 'signed off' by the consultant before having sex. This is usually about eight weeks after treatment.
People of all ages who are sexually active are at risk of sexually transmitted diseases (STDs) and STDs in older people are increasing. Anyone starting a new relationship, or people in a long-term relationship who haven't already done so, should have a discussion about safe sex. Information and advice on safe sex is widely available from health centres and on websites such as NHS Choices. Your GP can also offer confidential advice about safe sex. It is also important to remember the need for good hygiene to avoid the risk of infection for both partners - such as a urinary tract infection (UTI).
Any sign of unusual discharge, itchiness, discomfort, or any blisters, sores, spots or lumps around the genitals or anus should be checked with your GP. Many people with STDs do not have symptoms. If you've had unprotected sex but feel healthy it is still important to get tested.
Action on Elder Abuse
Charity that works across the UK to protect, and prevent the abuse of, vulnerable older adults.
British Association for Counselling and Psychotherapy (BACP)
Organisation working to promote counselling and psychotherapy. Provides information about different types of therapy and contact details of local counsellors and therapists.
Offers advice, relationship counselling, sex therapy, workshops, mediation, consultations and support face-to-face, by phone and through its website.
London SE1 7NX
T 08000 502020
A charity offering information on lesbian, gay and bisexual issues.
Last reviewed: March 2012
Next review due: March 2015
Reviewed by: Jill Manthorpe, Professor of Social Work, King's College, London and Dr Claire Surr, Senior Lecturer and Head of Education Programmes, Division of Dementia Studies, University of Bradford, Bradford
This factsheet has also been reviewed by people affected by dementia.
A list of sources is available on request.
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