End of life care for people with dementia: results of a survey

David Metz | 29th March 2017 | Feature post

A recent contribution to thinking about end of life care for people with dementia has been made by the NHS Directors of Clinical Care for Dementia and End of Life Care. One issue highlighted is a fear that people in the later stages of dementia lack mental capacity and so there is reluctance in staff to be more proactive in proposing the most suitable treatments. Yet it is precisely because people with dementia will ultimately lose capacity that the opportunity to offer Advance Care Planning (ACP) at an earlier stage must not be lost, particularly because dementia is now considered the leading cause of death in England and Wales.

ACP consists of three different activities: preparing a Lasting Power of Attorney, an Advance Statement of wishes and preferences, and an Advance Direction to refuse treatment (ADRT). A recent survey of memory clinics carried out by the Memory Services National Accreditation Programme for MyLivingWill showed that ACP is discussed in 75% of clinics and focuses on the LPA. There is no lead person for ACP in 80% and there is no protocol. Wishes and preferences and ADRT are discussed in only 10% of clinics.

ACP requires trained staff to have sufficient time for ongoing discussions with patients in early stages of dementia, as well as with the family, if appropriate care is to be given when the patient has lost capacity. Empowering staff for these difficult discussions requires on-going training to all. A useful tool for training is MyLivingWill

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