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Arranging who will be responsible for care

The onset of the disease

Arranging who will be responsible for care

You may find it useful to arrange a family meeting in order to discuss how to best care for the person with dementia. Many people who do not consider their family to be particularly close, are surprised by the support they receive through such a meeting. Depending on how far advanced the dementia is, this could be an ideal opportunity to include the person with dementia in arrangements for their care. Periodic family meetings could be held both at the onset of the disease and as the needs of the person with dementia change. It might help to bear in mind the following guidelines when organising a meeting :

  • All members of the family should try to attend the meeting, even if it means travelling some distance.
  • Everyone should try to find out as much as they possibly can about the disease before they arrive. In this way, they will have a better idea of what dementia is and what the implications are for caring for someone with dementia.
  • It is a good idea to prepare a brief agenda of the main points to be covered in the meeting.
  • During the meeting everyone should at some point be allowed to say what they think without interruption or criticism. If certain members of the family tend to be disruptive or do not respect the rights of others to speak, it might be worth asking an outsider to mediate the meeting, e.g. a doctor, minister or professional counsellor.
  • Some families prefer to agree on one person who will be the main carer, whereas others tend to share the responsibility. However, even if one person has been designated as having the main responsibility for care, other members of the family can still provide a great deal of assistance. They can help the main carer by providing transport, sorting out paperwork or keeping the person with dementia company etc. A family meeting can be useful in sorting out who and to what extent people can and are willing to help. It might help to draw up a timetable. A family meeting can also be useful to highlight potential practical problems that might interfere with someone’s ability to provide care. Some members of the family may be unable to involve themselves with caring due to distance or financial reasons. This can be frustrating and cause feelings of guilt. Such feelings can be discussed at a family meeting, as can any problems, which may have already arisen due to the illness.
  • Neighbours and friends can also play a valuable role in caring. They may be able to help in ways that family members would be unable to do due to their proximity. They could keep an eye on the person if they have a tendency to wander and help you with household tasks such as shopping. This would take some of the strain off you and give you more time to look after the person with dementia. Also, when you just need someone to sit with the person for a short period of time (e.g. 10 minutes) you could ask a neighbour, whereas you would probably feel guilty about asking someone to travel some distance unless it was a really important matter.



Last Updated: Thursday 06 August 2009