Sexual difficulties

If you are caring for a partner with dementia there will be a great many changes in your relationship over time and these may include changes in your sexual relationship. Of course, every couple and each situation is different but sexual problems, when they occur, can often be a cause of great distress.

You are likely to experience a sense of loss if a good sexual relationship ceases or no longer becomes enjoyable. It may help if you can express your feelings to an understanding professional or a good friend rather than bottling them up. It is important to remember that any strange or uncharacteristic sexual behaviour is likely to be part of the dementia and not directed at you in any personal way.

Of course, this may not be an area of concern for you at present. You may be able to continue with a satisfying sexual relationship for quite a few years to come or you may feel happy that you can remain affectionate and close in other ways.

Before the diagnosis

You may become aware of rather puzzling changes in the period before dementia is diagnosed. Perhaps your partner has become less interested in sex and you feel hurt or rejected or perhaps they have become more sexually active but less loving and considerate.

With a diagnosis of dementia you can at least feel assured that nothing personal is involved and perhaps make allowances for changed behaviour. It may help to talk to the doctor or other professionals about why the dementia affects your partner's sexual behaviour in a particular way.

Diminishing sexual interest

Many people with dementia do seem to lose interest in a sexual relationship and the person may become quite withdrawn at a fairly early stage. Being stroked or cuddled may give them reassurance but they may not be able to initiate any affection themselves.

Sometimes people with dementia may passively accept sexual overtures without being very responsive. For some carers this is better than nothing as it helps the relationship to feel more normal. Others may be left feeling guilty because the person does not seem to be making a choice. Only carers can decide what seems right in the circumstances but it may help to talk things through with someone who understands.

Increased sexual demands

You may find that your partner's desire for sex has increased, sometimes resulting in quite unreasonable and exhausting demands, often at odd times or in inappropriate places. This may make it difficult for you to show normal affection in case your partner mistakes it for a sexual overture.

Increased sexual demands can be particularly upsetting if your partner seems cold and detached. You may feel demeaned and as though you are being treated like an object. Such feelings will be even stronger if your partner forgets they have had sex immediately after it occurs or no longer recognises who you are. Do seek support for yourself.

If the person appears to be very frustrated it may seem appropriate to encourage masturbation in private. Some people with dementia may become aggressive if their demands are not met. If this occurs it is a good idea to keep safely out of their way till the mood has past. Ask for advice from the GP or consultant if this is a frequent occurrence or if you are frightened. Medication may be considered as a last resort. The person may become calmer as the dementia progresses.

Carers reactions

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

• Some carers find it impossible to contemplate sex because they are caring for their partner as a parent might for a child. They find that intimate tasks they have to do for the person put them off the idea of sex.
• Many carers find it hard to enjoy a sexual relationship when so many other aspects of the relationship have changed and little else is shared. They feel they are living with a different person.
• Some carers find that their partners are clumsy and inconsiderate due to the dementia but they don't want to undermine their confidence. Sex becomes something to be endured rather than enjoyed.

Carers often feel guilty about their reactions and feel the need to talk to someone who understands the situation.

Ways of coping

• Some carers continue to sleep in the same bed while others find this unacceptable and move to single beds or separate rooms.
• A discreet relationship with someone else provides a safety valve for some carers. Others may find this impossible while the person remains at home though they may perhaps consider it if the person goes into long-term care.
• Masturbation may bring relief and enjoyment for some carers. Others find this unacceptable. They may prefer to channel their energies in other ways.

Everyone is different.

Getting support

There are no magic solutions but support and affection from friends and family may help you to cope with the situation.

• You may find that discussing problems in a carers group with others who have had similar experiences may enable you to feel less unusual or alone. Having a good laugh or cry in the company of others who understand can also help.
• You may prefer to talk about your feelings on a one-to-one basis. Perhaps your GP, community psychiatric nurse or a good friend can give you the time and understanding you need.
• If you find it difficult to talk to someone you already know about such an intimate subject, talking to a trained counsellor may help. Counselling won't alter the situation but it may help you come to terms with the situation and make some choices for yourself.

If you do seek help from a counsellor make sure it is someone who is properly trained and experienced in this field because anyone can set up as a counsellor. Ask for a recommendation from someone you trust. Fees vary considerably so check on these beforehand.

The British Association for Counselling, 1 Regent Place, Rugby, Warwickshire CV21 2PJ can give you details of trained counsellors and psychotherapy organisations. Write, sending a C5 stamped addressed envelope.

June 1997

Page Text supplied by The Alzheimer's Disease Society of Great Britain