My life until the end: Dying well with dementia report launched

'My life until the end' was launched by the Alzheimer's Society on 25 October 2012.  38 people with dementia, carers and former carers, were interviewed and recommendations for change were made based on their experiences.

• Read the full report

The report focuses around accounts of people with dementia and their carers' experiences. It exposes the choices and options that exist in the UK and addresses the key issues that dementia presents at the end of life such as:

• Public awareness, care planning and proxy decision making - A lack of discussion around death and dying amongst the public means that the wishes of people with dementia are often unknown.
• Dignity, Pain, Withholding and withdrawing treatment - People in later stages of dementia are sometimes treated without dignity as they are less able to communicate their needs and wishes this causes particular problems in cases where pain, discomfort, hunger and thirst are present. This is a particularly challenging aspect for clinicians.
• Emotional and spiritual concerns - Dementia is progressive and it can be difficult for people to make decisions towards the end which means that planning in the early stages is essential.
• Place of care and death - The report revealed that most people with dementia want to die at home but many die in hospital.

Findings and Recommendations

It was found that there are some examples of good practice in end of life care for people with dementia which made the person, their families and carers feel that they had the best death they could have had. This should be the case for all people dying with dementia in the UK.

There should be greater recognition of dementia as a terminal illness and greater support for people to plan for their future in formal as well as informal ways. This could be achieved if there was more training for clinicians and care home staff especially around initiating and conducting conversations about end of life care planning. There should also be more research into understanding the detection of pain in people with advanced dementia. People should be supported in the different models of care and in the different settings that they have chosen to die in.

For more information about this work please read the report, read our position statement, or email ppa@alzheimers.org.uk.

If you, or someone you know has dementia and wants to plan for their care in the future, read the leaflet from the National End of Life Care Programme.