I was invited to join a meeting of the Memory Support Group of a North London Memory Clinic. The meeting was led by the nurse who is part of the Memory Clinic team. There were 6 carers, 5 of whom were caring for their husbands and one carer who was caring for her mother. All the patients had advanced dementia and were at home.

All the carers were unaware of advance care planning. The carers were all surprised to hear about the Advance Decision to Refuse Treatment (ADRT) and that this is a legally binding document. None of the carers had been made aware of the journey down which they had come nor were the possible future health crises discussed.

Since all the patients had advanced dementia and no ability to make decisions, it was felt that this discussion was too late for both them and their carers. However the carers recognised the advantage to themselves and their children of having discussions about the issues raised by an ADRT, even if no official ADRT could now be put in place. The carers, especially those with large families, agreed that such discussions would be most helpful in avoiding family difficulties at the time of an inevitable crisis.

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