I always considered my father to be an obstinate, solitary and hardworking man. I have now discovered an affectionate, kind and tender father. That side of his character had always been well hidden, perhaps as a result of embarrassment or inhibitions. It’s thanks to Alzheimer’s disease that I have now discovered it.
My wife and I had a very close physical relationship, but since she was diagnosed about four years ago she has gradually lost interest. It bothered me a lot at first but we still share a bed and that helps me feel close to her. It’s something I have come to accept.
You may have found that your relationship with the person with dementia has changed somewhat as a result of the disease. Behavioural changes such as suspiciousness, false accusations, paranoid delusions and aggressive behaviour can put any relationship under considerable strain. Some carers feel that the heart of the relationship is lost and that the person with dementia is no longer the same person. As a result of communication difficulties and memory loss it can become increasingly difficult to share experiences and memories. You may feel that you have lost a companion and confidant(e). You might also feel isolated and alone. This can be the same for the person with dementia who might not even recognise you. If this person is also your sexual partner, you may at some stage be faced with changes in your sex life. Although it is important to realise that sex is not always a problem, you may find that the needs and interests of the person with dementia change. They might lose interest in sex or become excessively demanding. Even, if you can adapt to their changing needs, you may nevertheless feel uneasy, frustrated, rejected or even guilty about your own sexual needs. You might miss the physical contact and touch involved in a sexual relationship.
Some people find it difficult to reconcile their role as carer with that of sexual partner, or find changes in the personality of the person with dementia off-putting. However, by adapting your behaviour and bearing in mind their changing needs, you may be able to maintain a satisfying relationship and even discover qualities you never knew existed. But you should also try to find a solution for your own needs which are equally important.
How to cope with changes in your personal relationships
The changing face of your relationship
As the disease progresses the personality and abilities of the person with dementia may change considerably. You may tend to see these changes as losses and negative. They might also have a particular significance for you such as a change in roles and responsibilities or a redistribution of power. It might not always be easy to adapt as accepting changing roles often involves accepting other losses, e.g. the loss of a spouse might entail the loss of a cook, driver or organiser. Taking care of personal hygiene and taking over major responsibilities can sometimes mean crossing boundaries. You may find this difficult, particularly if the person with dementia used to care for you in the past. However, by accepting changes and losses, you might find new qualities in yourself and perhaps see a side to the person with dementia that was previously well hidden.
Coping with the changing sexual needs of the person with dementia
If the person with dementia is your sexual partner, you might find that it is possible to carry on sleeping together and engage in gentle touching and stroking, without having a full sexual relationship. Some people are surprised when they realise just how much they miss the closeness involved in sexual intercourse. Maintaining physical contact may help you to deal with the loss of the sexual side of your relationship. On the other hand, you might prefer to change your sleeping arrangements to sleep in separate beds or separate rooms. This might help if the person with dementia has a tendency to become aggressive as a result of unmet sexual needs. It might also help if you were to encourage the person to masturbate in private. You should not feel guilty about taking such measures because by doing so, you may be able to preserve a satisfying relationship.
You may find that the person is interested in sex but experiences difficulties which lead to anxiety or frustration. They may have forgotten the traditional practices of foreplay and intercourse. In this case, you could perhaps try to take the lead more and experiment with new ways of sexual gratification. You could also try to find non-sexual ways of promoting intimacy in the relationship, e.g. walking arm in arm or massaging round the shoulders.
Coping with your own physical needs
You may find yourself in the situation of having sexual needs but no way to satisfy them with your partner. However, your sexual needs are unlikely to disappear overnight and it is not selfish to try to cater for them. There are a few possible solutions. You could, for example, have a sexual relationship outside of the couple or masturbate. Some people are reluctant to pursue an alternative due to moral or religious beliefs or may feel embarrassed about masturbating and prefer to channel their energies in other ways.
Some people with dementia behave in an aggressive manner when their sexual needs are not catered for. It is important to look after your own safety. If the problem seems to be getting out of control, your doctor might be able to help. He or she might prescribe medication to reduce the sexual demands of your partner. There may be side effects but you have to consider you own safety and find a solution to the problem.
Talk about your feelings with someone you trust
It may help to talk about your feelings and any problems with someone you trust. If you feel uneasy about discussing such problems with a member of your family or a close friend, you might find it easier to talk to a trained professional such as a doctor, social worker or trained psychotherapist who understands dementia and the problems you are facing. He or she might be able to help you to disentangle your feelings. Talking to other people is unlikely to alter the situation, but it may help you to come to terms with things that are bothering you and help you to make choices yourself. Talking to people in a carers group may help you understand that you are not alone or abnormal. It can also give you the chance to have a laugh or cry about things.
Last Updated: Thursday 06 August 2009