Living well with Living Wills – giving people with dementia a choice in their future health care

The Alzheimer’s Society of the United Kingdom (UK) has produced the only Living Will specifically designed for people with dementia. This is available to download from the Alzheimer’s Society website on www.alzheimers.org.uk/have/livingwills.htm

Many people with dementia want a Living Will (sometimes called an Advance Directive) because they want to ensure that their wishes regarding their future care and treatment are taken into account.

A Living Will allows a person in the early stages of Alzheimer’s or another form of dementia to state what care they would like when they are no longer able to communicate effectively or understand the choices that have to be made about their care.

Living Wills are legally binding in the UK and can be used to specify wishes as serious and complex as ending kinds of treatment, or to give instructions on general beliefs and aspects of life which someone values, for example, food likes and dislikes. The form can also be used to nominate a friend or relative who should be consulted.

Peter Ashley, a trustee of the Alzheimer’s Society and a person with Lewy Body dementia says:

‘Although I can make choices about my health care now, I want my views taken into account in the future. A Living Will helps both my family and my doctors make decisions about my care knowing what my preferences would be.’

The Alzheimer’s Society advises all people in the early to moderate stage of dementia to consider making a Living Will or Advance Directive.

We believe this is the best way for a health care team to decide on the best course of treatment, based on your personal preferences. Also, a statement can lead to a dialogue with both the healthcare team and members of your family that might otherwise be delayed until it is too late.

Harry Cayton, chief executive of the Alzheimer’s Society said:

‘A Living Will enables a person with a degenerative, terminal illness to have their views and wishes respected. These days, with earlier diagnosis and new drug treatments, people with dementia can express their views for longer and we feel this is a very important and significant step in modern dementia care.

‘A lot of people think that Living Wills are about euthanasia, in fact they cannot be used to authorise a doctor to do anything unlawful or act against their clinical judgement. Neither can they include a refusal of basic care, such as pain relief or food or water.’

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