Maintaining a social network
Taking care of yourself
"Visits from friends have become quite rare. I don’t think they know how to react towards me. I miss the contact but fortunately I have got one good friend who still comes round regularly. Sometimes I can’t follow what he’s saying but he’s very patient and we always end up having a good laugh." (Gladys)
"I’ve started going out bowling on Friday evenings like I used to. I miss George being there but when I get back I feel full of energy and enthusiasm. I think it does us both good in a way." (Kit)
Carers often give up things they enjoy (e.g. holidays, hobbies, work, activities and contact with friends and relatives) in order to have more time and energy to care for the person with dementia. Many have a list of priorities and a tendency to put their own needs and wishes low on the list, perhaps thinking that they are less important. However, leisure activities are linked to psychological and physical wellbeing in that they contribute to self-esteem, relaxation and satisfaction with life. They may also reduce loneliness and the risk of social isolation and depression. Furthermore, they can act as a buffer against the effects of stress. It is therefore important to keep up some leisure activities. Support groups may help and exist for both carers and people with dementia.
People with dementia also risk becoming more and more isolated and depressed as the disease progresses (please see section on dealing with depression). It is not uncommon for them to lose interest in activities that they previously enjoyed. Indeed, certain factors can make it difficult for them to keep up activities - perhaps it is hard to remember the rules of a game, to follow a conversation or to find one’s way to an event. Contact with others may be confusing and people with dementia may be afraid of making mistakes. However, with a bit of support, people with dementia can often manage more than they or others might think. Even if it is necessary to keep repeating the rules of a game or explaining something to them, what counts is being able to enjoy an activity with others.
Maintaining contact with friends and relatives is important. If you want to invite friends or relatives round, concentrate on enjoying their company and don’t be over concerned about the state of your home or making mistakes. You may find that some people are a little uneasy at first, not knowing what to do or say. It may help to talk to them about the disease, how it has changed your lives, how you value their friendship and continued support, what kind of activities you can all still do together etc.
Finding people whom you can trust and who care about you is also an important step in building up a support network. Try to do this before you get to the stage of needing support from others
Another possibility is to socialise with other carers and people with dementia. In Europe, Alzheimer’s Cafés are becoming popular. These are places where people with dementia and carers can get together and talk in an informal setting without having to worry about what others might think. If this appeals to you, find out from your Alzheimer’s association if there is one in your area.
For the person with dementia
- Try to maintain contact with other people.
- Try to accept that some people may have difficultly dealing with their own fears about dementia and may therefore avoid contact with you.
- Keep up activities and hobbies you enjoy for as long as you can.
- Accept help from others in order to enable you to pursue your interests if necessary.
- Learn something new or get someone to “re-teach” you an old hobby.
- Adapt what you do in line with your abilities which will change over time.
- Enjoy being with friends and don’t worry about making mistakes.
- If you do make mistakes, go easy on yourself.
- Ask people to repeat what they said if you don’t understand or can’t remember.
For the carer
- Try not to overlook or neglect your own needs and interests. It is normal that your concentration is on the needs of the person with dementia. Nevertheless, try to avoid radically reorganising your life in terms of your own interests and social contacts.
- Try to arrange for someone to sit with the person with dementia and then enjoy a bit of time to yourself. You could also have some time on your own if the person with dementia is in safe hands at a support group.
- Try to find solutions for things that are preventing you from maintaining your social life e.g. lack of time, transport problems, no energy etc.
- Enlist the help of friends and family. If this is not possible, get in touch with other people e.g. support groups, members of a church, voluntary associations or Alzheimer associations. They may be able to help you.
Last Updated: Friday 11 September 2009