Organising help and support within the family
After diagnosis - What next?
"We started off with a meal. Then, we cleared the table and started to discuss the important issues. I felt comfortable with it and was quite moved to see how my family had rallied round to help my wife… and me of course!" (Bernard)
"I was hesitant about organising a family meeting as my two sons don’t always see eye to eye. They were great though. I think that working out a care plan together did them some good." (Pauline)
It is best not to consider any one person as the automatic main carer but rather to discuss the issue within the family. It is always nicer to feel that one has some choice in the matter and this makes it easier to accept. Women are not necessarily better carers than men and nowadays, men are becoming increasingly aware of their responsibilities and abilities in this domain. Some may need a bit of encouragement in certain cases though. It is very important to sort out who is going to help, in what way and to what extent right at the beginning.
Organising a family meeting is a good way to start. Try to make sure that everyone attends. Of course, some people with dementia might feel ill at ease organising or attending such a meeting whereas others would be offended were it to take place in their absence. This may depend on the person’s character and the dynamics of the family. It is best to try to discuss the issue before going ahead. If you think that there could be conflict between some family members or on certain issues, ask someone who is neutral to be in charge of the meeting e.g. a priest, counsellor or social worker.
Be prepared for conflict or disagreement about who should do what, about legal and financial issues, about people “not pulling their weight”, and about the “best way” to organise care. If you can, try to read up a bit about the disease and its consequences so that you can explain this to the other family members if necessary. Some may want more information, others may be in denial about the disease. During the meeting, try to make sure that everyone has the chance to speak (without being interrupted) and to ask questions.
Make an initial list of things that people could do. Don’t be too restrictive. Maybe you don’t need help to go shopping, walk the dog and do the laundry now, but later you will probably be very grateful for it. You could perhaps decide to do the task yourself at first but with the knowledge that someone will help at a later stage.
Make a note of the offers of help as you and those who have volunteered may forget. Try to make sure that everyone helps in some way. Even family members who live far away could perhaps provide emotional support through regular contact (e.g. by telephone or email), advice on finances, financial support or help organising outside services.
Try to agree on concrete offers of help. An invitation for you to “just ask if you need help with anything” may be well intended but far less useful than a more specific offer e.g. an invitation to take you shopping every Tuesday evening whilst someone keeps the person with dementia company.
Children can help too e.g. by taking care of a family pet, helping with household chores, running errands etc. For some children, this can help them come to terms with the disease but others may prefer to ignore the disease and try to get on with their lives as before. The situation for children is somewhat different than for adult members of the family as they are still at the stage of being cared for themselves and may find a role reversal disturbing.
It is best to give children the opportunity to help and to respect their feelings but at the same time avoid letting them become the “carer of the carer”. (Please see the section on talking to children and adolescents on page 63).
Periodically assess the kind and extent of assistance needed as the needs of carers and people with dementia tend to change as the disease progresses. Regular family gatherings can provide a good opportunity to discuss each others’ responsibilities, problems and feelings.
Have a support plan drawn up which sets out what your needs are and how they can be met. This could be discussed at the family meeting and the necessary arrangements made to discuss it later with those responsible for the provision of services.
For the person with dementia
- Take part in the meeting if you can and if you feel up to it.
- Try to express what kind of help you would appreciate and from whom.
- Don’t feel ashamed about needing assistance. Remember that it is due to a disease which anyone may develop.
- Letting other people support you gives them a chance to show you that they care.
- If you live alone, try to pay particular attention to ensuring that you manage to get nutritious food, help preparing it and delivered meals if necessary.
For the carer
- Ask for and accept offers of help without feeling guilty about it.
- Respect people’s limitations and wishes.
- Try to make sure that the person with dementia is involved in discussions if this is what they want.
- Avoid treating the person with dementia like an object or “the problem”.
- You may have heard or read about “good carers”. However, generally speaking, it is not a good idea to think about yourself or others as being a “good” or “bad” carer. Each person can only do his/her best. Try to learn what you can from other people’s experience or knowledge but don’t feel less worthy or judge others just because you or they do things differently.
Last Updated: Friday 11 September 2009