Contact and communication
"I don’t know how dementia will affect our relationship, but I know that I will always be able to count on a smile, a gentle touch and a kind word from Dora." (Ernest)
"I’ve lived next door to Geraldine for over 20 years. She’s a bit like a sister to me. She seems more distant now and we can’t talk in the same way but I visit her regularly and make sure she’s OK. She’s still very important to me." (Kitty)
Over the years, people build up numerous different kinds of relationships with other people i.e. with partners, parents, close friends, relatives, neighbours, children, workmates and other people with whom they come into contact. People with dementia and those close to them may find that certain aspects of these relationships change. As already mentioned in previous sections, they might experience difficulty communicating with each other, feel stressed or frustrated and find changing roles problematic. Sometimes, the personality of someone with dementia may seem to change slightly and/or they may act a little bit out of character.
Such changes are not necessarily negative and may even strengthen some relationships. However, if you do find any of the changes in your relationship difficult to handle, try to remember that they are most probably due to the effects of dementia. In some cases, for example where it took a long time to obtain a diagnosis, changes due to dementia may have had a negative effect on a relationship without either person realising. In general, it may help to talk to somebody about how you feel. Having difficulties is not a reflection on the quality of the relationship but rather on your ability to cope with problems.
The onset of dementia does not necessarily mean the start of problems in your sexual relationship with your partner. For many people, this continues to be one of the good things in life that they can still enjoy and share. Hopefully, this will be the case for you.
However, it is not the case for everyone. Some people with dementia appear to lose interest in sex or, on the contrary, want it more often than their partners do. This can be somewhat problematic and even more so if it has become difficult to communicate. Sometimes, the person with dementia becomes moody and irritable in addition to having lost interest in sex. If this happens prior to diagnosis, their partner may wrongly interpret this as a sign that there is a problem in the relationship.
Carers may also experience a change in their needs and desires. Some may find it difficult to combine their new role of carer with that of partner. Others may simply be too tired or stressed to enjoy intimate contact. Unfortunately, if the person with dementia does not have the same insight as before, they may take this as rejection. For some carers, it is important for the whole relationship to be good in order to have a satisfying sexual relationship.
It is difficult to give specific advice on how to deal with the issue of sexual relationships as attitudes towards sex and relationships differ greatly from one couple to the next. One approach would be to continue a sexual relationship for as long as it is enjoyable for both partners, provided that the person with dementia is fully aware of what is happening. Common sense and love or respect for each partner should dictate what happens.
For the person with dementia
- Concentrate on the positive aspects of your relationship(s).
- Try to adapt to changes.
- Avoid blaming yourself or your partner for any changes.
- Find ways to maintain contact and communication.
- If you experience sexual problems, talk to your partner, a counsellor, a doctor or a trusted person about them.
- Although such problems may be linked to dementia and/or medication, it may nevertheless be possible to find a solution.
- Try to maintain some kind of physical contact with your partner even if your sexual relationship has changed somewhat.
For the carer
- The above points may also be relevant to you.
- Concerning sex, some people with dementia forget how they used to please their partner but still have a need for intimacy and touch.
- · Think about different ways to respond to this need and to give pleasure to each other.
- You may find that it is necessary to take the initiative more than before.
- Bear in mind that at some point in time, the person with dementia may, due to difficultly communicating, be unable to consent to the sex act.
- If you or your partner feel uneasy about your sexual relationship and cannot find a suitable solution, you could perhaps consider separate beds or rooms.
Last Updated: Friday 11 September 2009