3. 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. Because dementia affects the brain, sexual feelings can change unpredictably for someone who has been diagnosed with dementia. Depending on which parts of the person's brain have been damaged and what medication they are taking, a person with dementia may 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. However, sometimes one or both partners may feel varying degrees of upset, loss, anger, embarrassment, anxiety or frustration at these changes.
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Some people with dementia seem to lose interest in sex at an early stage, and can become quite withdrawn.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. They may enjoy or feel reassured by being stroked, hugged or cuddled, but no longer be able to initiate any affection themselves. Some people feel content if this side of their relationship ceases, as long as the closeness and affection continue in other ways. For example, 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.
One person in a relationship may feel guilty if they become less interested in sex than their partner. It is important for the other person to respect that choice, and perhaps to find other ways to maintain their intimacy as a couple. It is equally important that they find 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. A considerate and sensitive approach towards turning down sexual demands may help prevent aggression. In the first instance, it is best to politely turn down sexual demands, and do so in a manner that acknowledges the person's sexual needs, is respectful and does not hurt their feelings. In some cases it may be a good idea to keep safely out of their way until the mood has passed.
Though this is often a difficult and sensitive topic to discuss, ask your GP or consultant for advice if this happens frequently, or if you have any concerns. 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 - eg helping 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. They may be able to make suggestions about the person's individual likes, dislikes and preferences that can help when assisting them with their personal care.
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 their partner. 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 be offended by their behaviour 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 when the person with dementia is physically strong, 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 - something that may be worsened by the dementia.
It is important to try to not take the person's behaviour personally. Remember that such behaviour is likely to be caused by difficulties and changed perceptions related to dementia. However, partners and carers must look after their own safety. If either partner finds themselves agreeing to sex when they would rather not, it is important to talk to their GP or consultant. The same applies if either partner feels that they are at risk of violence, aggression or verbal abuse. They can also phone Alzheimer's Society's National Dementia Helpline for confidential advice on 0300 222 11 22.
Changes in levels of inhibition
Dementia can reduce a person's inhibitions, which may mean they make public what were 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 also use language that you have never heard them use before or that seems very out of character.
These situations may be embarrassing for those close to the person. However, 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. For example, someone who is inappropriately underdressed may be too warm or may have simply forgotten to get dressed.
Other reasons for behaviour that may appear sexual include:
- needing to use the toilet
- discomfort caused by itchy or tight clothing 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 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.