TREATMENT STRATEGIES OF ALZHEIMER’S DISEASE: SUPPORT GROUPS

Thursday, April 2, 2009 4:25

The value of support groups for members of families of patients with dementia is now proved beyond any doubt. As everybody reading this book will be aware, caring for a demented family member creates tremendous practical, psychological, and social problems. Carers will talk of a lack of support and information from doctors, poor understanding of the disease processes, depression, feeling trapped, angry and fearful of the sufferer’s behavioural problems, the feeling of isolation, and so on. Taking part in a group especially established for the relatives of people with dementia has been shown to be especially beneficial for spouses and others who are the main providers of care. It can reduce their isolation, provide practical and moral support, increase understanding of the disease processes, and help them to become more aware of their own needs.

Although support groups are becoming an increasingly important feature of the care provided by the health service, social services, and voluntary organizations, many relatives will be living in an area where such a group does not exist. If you find yourself in this situation you have three choices. The worst is to do nothing. The most difficult, because of the time required and also because you may well be feeling drained and exhausted, is to start up a group yourself. Or, you can try to persuade somebody else to establish a group. A local social worker, community psychiatric nurse, or member of the staff of a day hospital or nursing home may be prepared to act as the focal point for the establishment of a carers’ group. It is most likely, however, that you will have to take the initiative yourself, in which case it is a good idea to take advice and counsel from one of the voluntary bodies that already exists to support those caring for relatives with dementia. Probably the most experienced in this field, and certainly the largest in the United Kingdom, is the Alzheimer’s Disease Society whose address and telephone number are included in the list of useful names and addresses at the back of this book. The society has a network of regional offices with trained staff who, although stretched very thinly, will be able to provide information and advice that is relevant to your local area.

A group doesn’t have to be large; three or four people, even if they can only meet once or twice a month in one another’s houses, may be able to give each other valuable support. The names of others in a similar situation can often be discovered by consultation with your local health visitor, a community psychiatric nurse, the social worker, or by putting up a notice.

Different groups will be run in different ways, but there are several important points that are common to all those that are most successful. You need to decide realistically how frequently you can meet and how long a meeting should last. Put aside some meetings for general discussion, but try to invite a speaker to at least alternate meetings if possible. Good speakers to have might be the sister of the local psychiatric day hospital, a community psychiatric nurse, an occupational therapist, a doctor, and so on. Each can let you know how he or she works and can give advice on your problems. More importantly, you will be able to feed back to them how you feel about what they are doing and very often this will result in a useful rapport. The other advantage of inviting such speakers is that they will inevitably know of many other people who might well be helped by joining your group, and who in turn may help the group.

Although it may be difficult, it is a very good idea to go and talk to people who are running other groups if you can manage this. Even a single visit to an established group in a neighbouring town may give you a lot of useful help.

The first thing to think about, however, is the most difficult problem of all; who will look after those with dementia while their relatives attend the group meetings? In many instances, families or neighbours will be able to help, but there will always be some people who are not in this position and some groups manage to recruit a small body of helpers who are prepared to give up a few hours once a month. These can sometimes be recruited from voluntary organizations such as churches and youth clubs, but it is important to remember the particular qualities that are needed in a person who is going to look after somebody with dementia. If possible, allow them to get to know each other in the presence of the relative who wishes to attend the group, before they are left together for the first time. The best sort of helper in such circumstances is often the relative of a dementia sufferer who has died or moved to institutional care.

Establishing and running a support group can be an extremely rewarding and fulfilling occupation, but it can be very tiring and time-consuming. It may also mean that you will be contacted from time to time by people who have been given your name and who will telephone you for advice about their problems or to inquire about joining the group. Think carefully about this before embarking upon such a course, but do remember that it is usually possible to share out the tasks involved; not only does this relieve the strain on you, but it also adds to the fulfilment experienced by others.