Coping with dementia can generate two different types of family problem. The first is the stress that can be caused by the demands that the disease process makes on the carers and often their children. The second, connected with the first, is the ill-feeling that can sometimes be fostered within families because one or two members feel that they are taking most, if not all, of the responsibility and providing the greater part of the care.
It is important that all members of the family are involved in making decisions about the pattern of care that is to be provided and the support that is required. If you are a lone carer among others who are helping only a little or not at all, it may help to arrange a family conference so that they are all aware of how you are feeling and what you are having to cope with. If you are beginning to feel that you have gone as far as you can on your own, make this plain in a sensitive way and ask the others not just whether they can help, but how they can help. If the time has come when lack of additional support means the sufferer will have to go into an institution, for example, they have to realize that this is a family decision and not just yours. You have done all that you can and they are saying that they have done all that they can. Even if you are the mainstay of the care that is being given to your relative with dementia, it is not just you that is responsible for any change in the pattern of care, but all your family together. In other words, the change is occurring not just because you can’t carry on but because they can’t help either. Above all, don’t carry on nurturing ill feelings beneath an apparently unworried outward appearance. Dementia is a family disease, and the whole family has a responsibility to anyone suffering from it.
When younger relatives take an aged parent with dementia into their household, this often has an impact on their own children. Children can suffer anything from the loss of their bedroom to less personal attention from their parents, though they tend to be remarkably good at coping with situations like this and adapt very well. It is often the parents’ worries on behalf of their children that are the problem, rather than the effect on the children themselves. Sometimes, however, children can be affected adversely and there is no way of predicting this in advance. Fear, particularly in younger children, can often be overcome by explaining what is going on and why their grandparent is now so different, and also letting them see how you handle situations and relate to their grandparent. Very often children form a delightful relationship with a demented elderly person, particularly in the earlier stages of dementia, and this is probably beneficial to all involved. Children’s love can be very different from that of adults — a natural expression of affection rather than a feeling of duty, which is so often a part of the emotional relationship between an adult and his or her ageing parent.
The biggest problems usually involve teenagers. They may be embarrassed to bring their friends home and feel isolated as a result; they can feel reluctant to let their friends know the situation, in case they become the object of ridicule. There may also be clashes, either because they are asked to help or because although they would like to, it would conflict with the demands made upon them by the usual teenage activities. It is very important that they understand what is going on; sometimes, as is the case with younger children, teenagers can make a major and very positive contribution to the care of a person with dementia.
It is essential, when accepting an older person with dementia into your home, not to expect that the whole family should arrange their lives around the sufferer. The other family members will still need time and attention from each other, possibly even more so than before, and everyone will have to be very sensitive about one another’s needs. Hostility or aggression in one member of the family should not be allowed to spread; rather, the underlying stresses and strains should, if possible, be addressed.
In some cases, despite the best of intentions, taking a relative with dementia into the family is disastrous. If this happens, you have to rest content with the knowledge that you have at least tried to do the best that you can. It is important not to feel guilty about exploring alternative approaches to care. It is the integrity of your own immediate family that is most important. If this breaks up, not only will the sufferer lose out, but so will everybody else. Take seriously any tendency to arguments and family unhappiness before it goes too far.
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