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Dementia Palliative Care: It’s time to start talking


The World Health Organisation (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”[1]

I’m really pleased that Dementia is now internationally recognised as a life-threatening / terminal condition as this means that Dementia palliative care can be taken seriously. My interest in dementia palliative care came from caring for my mother, who is living with dementia. At one stage she was very ill; her memory plummeted and her communication was next to nothing. I had difficulties accessing services and I had poor knowledge of what was available for her, and the fact that she was from Africa created further cultural complications. I went through an emotional roller coaster; I had no clue what my mother’s preferences of care were when she was not able to contribute to discussions, and when we thought that she was about to die, we struggled with the decision of whether to transfer her back to her homeland of Zimbabwe.

Fortunately her dementia was due to a treatable illness and once I finally managed to get her treated she improved. This process took two long years of struggling; If I had had access to information sooner, a lot of pain and stress could have been avoided. I was working for the NHS then, yet lacking information, so people who do not have a direct link to health and social care systems must have even greater difficulty. People out there are struggling without dementia advisors and advocates.

This is why I was so thrilled to get involved in developing a pilot project for Dementia Palliative Care Services in the UK. This project, based in Westminster, was established as part of the government’s Dementia Care Strategy and End of Life Care Strategy in 2008. It was a huge success, enabling early discharges from acute settings, alleviating the problem of ‘bed blockers’ in the NHS, and allowing more than 75% of users to die in a place of their choice. From being involved with this, I learned that most people want to die at home, in the environment they know, with the support of friends and family. ‘Institutionalised’ dying in a hospital has proved to be very expensive to the government, yet provision of the resources needed for dying at home have been restricted by constriction of health and social care budgets. A lot of people who are blocking acute hospital beds could be treated at home if funding was available.

In palliative care, the person living with a life-threatening condition should be at the centre of the care process and all the planning and provision of care should be anchored on to their wishes. However, this is made complicated by dementia because the person is gradually losing the function of their brain due to progressive damage of the brain cells. This is irreparable, meaning that memory will continue to deteriorate until the person loses capacity to make intelligible decisions. It is therefore paramount to begin advanced planning as early as diagnosis stage to capture people’s own desires. If nothing was indicated when the person had capacity, then LPAs[2] and Best Interest planning should be pursued. My experience from the feedback I got from holders of LPAs is that they often felt guilty after making decisions. They always felt they should have been involved earlier on in the disease stages to help the person compile their end of life decisions.

In London, the development of the ‘Coordinate My Care’ system (www.coordinatemycare.co.uk) has been a major milestone. This is a resource, created by the NHS, that stores care plans for palliative care patients. I believe this resource should be accessible to all organisations dealing with people at the end of life and not just NHS and ambulance services. Dying Matters (www.dyingmatters.org) is another organisation that has made some big leaps, demystifying death through their awareness campaigns. Discussions on death planning are a taboo here in UK, as they are in most countries, and Dying Matters have given the nation an opportunity to openly discuss the topic. Developments such as these and the Westminster pilot project are encouraging. However, there still needs to be a much greater awareness of the principles of palliative care for dementia, and we need development of services centred around the individual across both public and private sectors.

1. www.who.int/cancer/palliative/definition/en/

2. “A Lasting Power of Attorney (LPA) is a legal tool that allows you to appoint someone to make certain decisions on your behalf.” (www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154)


Morejoy Sainetti
Nurse Consultant
Red & Yellow Care



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