Dementia: Barriers and facilitators at the end of life

Tony Ryan, PhD, Senior Lecturer/SY-CLAHRC Stroke Theme Lead, Postgraduate Research Tutor, University of Sheffield School of Nursing and Midwifery, UK, introduces the background to his longer article selected as ‘Editor’s Choice’ in the July 2012 issue of ‘Palliative Medicine’.

Tony Ryan

Open any newspaper or switch on your TV and you will not fail to escape the message that the number of people with dementia in our communities, hospitals and care homes is on the rise. Indeed, the number of people with dementia in Europe currently stands at around 10 million and is expected to rise to nearly 19 million by the year 2050. This represents a staggering 87 per cent increase and whilst policymakers continue to grapple with this challenge the existence of dementia places huge demands upon the person, the family and the professionals charged with meeting their palliative care needs.

Barriers
Despite this knowledge, research has consistently demonstrated that people who have dementia often fail to receive appropriate support and palliative care when they most need it, with surveys, observational studies and personal accounts drawing attention to the use of regimes of care aimed at prolonging life. A UK study selected recently as ‘Editor’s choice’ in the latest issueof ‘Palliative Medicine’¹,draws attention to some of the barriers and facilitators in achieving palliative care for people with dementia. Taken from the perspectives of medical and nursing staff these include:

• Failure to recognise dementia as a cause of death
• Failure to predict when palliative care is required
• Perennial problems around people with non-malignant diseases not meeting criteria for palliative care
• Resource problems and rationing
• Challenges around skills, competence and inter-professional working.

Facilitators
Alongside these, however, professional aspirations and good practices were identified. Many research participants believed that people with dementia deserve high quality palliative provision. They thought that the key to good decision-making was in getting to know the person with dementia and their family and saw a ‘shared history’ as important. Good communication with other members of the health care team also contributes to improved care and above all a commitment to the basic principles of palliative care as essential in achieving high quality care.

The paper demonstrates that there is much work to do in this difficult area of practice. The EAPC is right to continue to explore these issues and we look forward to the publication of the forthcoming White Paper on palliative care in dementia². But further work is required to enhance the skills of specialist palliative providers in order that supporting people with dementia becomes an integrated part of practice. Finally, a commitment to the development of longer-term relationships is required to help in shared decision making. This final point is the most challenging, especially given the reliance on brief episodes of care, but it is a challenge that must be addressed if people with dementia and their families are to feel secure in the care plans being made for them.

References
1. Ryan T, Gardiner C, Bellamy G, Ingleton C & Gott M. (2012) Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff. Palliative Medicine 26(7) 879–886. Originally published online 3 October 2011. (To download a copy of this paper, please see below).

2. EAPC White Paper on palliative care in dementia (scheduled for publication in 2013).

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