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

Tony Ryan

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.

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.

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.

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).

Find out more…
EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website.

Click here to view other EAPC-originated papers on the EAPC website.

Exciting news!
‘Palliative Medicine’, the research journal of the EAPC, is free to access during the month of October as part of the SAGE Global Free Trial. Click here to register for your free access. This will allow you to access all the ‘Palliative Medicine’ content including the current issue, online early, and our archives.

This entry was posted in Dementia, EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice and tagged , . Bookmark the permalink.

2 Responses to Dementia: Barriers and facilitators at the end of life

  1. cna schools says:

    Hmm is anyone else having problems with the images on this blog
    loading? I’m trying to figure out if its a problem on my end or if it’s the blog.
    Any feedback would be greatly appreciated.

    • pallcare says:

      I’m sorry to hear that you’ve been experiencing problems though this is the first comment that we have received about difficulty with images. We try to use as high resolution images as possible but sometimes I am afraid that they are rather lower than we would wish. Best wishes Avril

      have tried have been on to the site

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