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8. High quality end of life care

Context

Dementia is a progressive condition for which there is currently no cure. All people who develop dementia will have dementia at the end of their lives, either as the condition they die from or as a factor which may complicate the care of a different condition. People with dementia have the same right to a good death as people with other health conditions.

Diminishing capacity means that it is important for the person with dementia to plan for the end of their life at an early stage. Problems with capacity and communication can also contribute to undignified treatment and the treatment of pain in people with dementia at the end of their lives.

The Department of Health (2008) suggests that, for many, a good death would involve being treated as an individual, with dignity and respect, without pain and other symptoms, in familiar surroundings and in the company of close family and friends. However people with dementia may not be referred for specialist end of life care or receive appropriate treatment.

Ongoing work

We offer courses for managers and practitioners who work with people with dementia to consider approaches and practices that work well when connecting with people who live with dementia as the disease progresses.

The End of Life Coordination Centre operates seven days per week and coordinates referrals for end of life care in the last few months of an individual’s life to enable people to choose where they want to be cared for. We know that most people want to die at home instead of in hospital but it doesn’t always happen. We want to make sure individuals and their carers feel supported and confident to cope at home at end of life where this is a person’s preference and that the right care is provided at the right time by the right services and staff.

Our practice ensures that there is a specific focus on good end of life care and planning for people with learning difficulties and dementia.

Future plans

Dementia advisors will encourage all people with dementia to record their wishes for person with dementia to plan for the end of their life at an early stage.

We should always focus on quality of life, rather than length of life, in the final stages of dementia. Withholding or withdrawing treatment is especially ethically complex and emotionally challenging for a person with dementia as they may lack the ability to communicate, the capacity to make decisions and may not have prepared instructions about their wishes. There should always be an honest and open discussion between medical professionals and family, friends and carers about any decisions to withhold or withdraw treatment.

The quality of life and comfort of the person with dementia is paramount. Palliative and comfort care should be available to the person at all times and appropriate emotional support should be available for families.

Declining ability to communicate characterises the later stages of dementia.  All health and social care professionals should be trained to provide high quality, person centred care to improve dignity and quality of life even when communication has diminished. We need to ensure that people working with someone at the end of their life are able to communicate honestly and sensitively, both to the person with dementia and their families.