sailor girlSex, Sex & No Sex
Penelope Roques

Sex is usually a fundamental part of any intimate relationship and can be a source of anguish when one partner is affected by Pick’s disease, FLD or other form of dementia. In discussions during group meetings we have highlighted some problems. We will be hearing from a carer about his problems in the next issue. However, many sufferers of Pick’s/FLD have no change in their normal sexual pattern.

A good description of Pick’s/FLD is that the wiring in the front part of the brain has gone haywire. Sometimes there is no message getting through at all and sometimes messages are bombarding and cannot be switched off. When this happens more rational signals of caution seem to fail.

In some cases a sufferer of Pick’s/FLD will have loss of libido and show no interest in sex or consideration for the partner’s feelings. This may lead to suddenly having separate bedrooms and leaving the partner feeling shut out and isolated. Suggestions from the partner that they too have needs are totally ignored and there is no room for negotiation. After a long and close partnership this can be very hurtful.

Sometimes when rejection happens later in the illness we may wonder if perhaps the sufferer fails to recognise the face of the partner who after all, in their mind, is not this fifty plus person but is only 24 and very good looking!

The carer may also be so tired by their role of caring that they may not want any intimacies and in any case their feelings for their partner may have changed. Often a carer feels that the person they are caring for is not the person they married and their feelings have altered. They still love the person for whom they are caring but not in a sexual way.

We often describe a sufferer of Pick’s/FLD as being selfish and childish and appearing not to consider other people’s views. This can also be apparent in a sexual relationship. Failure to consider the partner’s needs is often mentioned. Encouraging the partner and explaining needs can work in some instances, but by no means in all cases.

Sometimes in cases of Pick’s/FLD we hear of changes in personality, particularly with patients becoming disinhibited. This may start with crude jokes told at inappropriate times and inappropriate comments. Such patients may also show increased interest in mildly perverted magazines for example. Disinhibition may also occur in the physical sense such as touching a partner inappropriately, which may cause great distress, particularly added to all the other stresses caused by Pick’s/FLD.

Pick’s/FLD causes immense sadness and the loss of small intimacies such as holding hands or the little pat on the shoulder can add to the sense of isolation and loneliness that these illnesses bring. Obtaining a diagnosis may provide some comfort. It is often only with hindsight that a carer can see when the onset of the illness and the symptoms occurred and can understand that although it was no help when they felt rejected and hurt, the changes in behaviour were in fact part of the illness.

The above letter was taken from the newsletter of The Pick's Disease Support Group August 98 Volume 4

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