Agreements needed to ensure good palliative care for people with learning disabilities and advanced dementia


In common with other European countries, Ireland’s national database of people with learning disabilities has shown increasing ageing trends in prevalence rates and the biggest proportional increase in the next 5-10 years is expected to be will be among persons aged 50 years and over with the associated risks of developing diseases such as dementia.

Specialist palliative care services have begun to work with people with people with learning disabilities, but in common with the general population this has been mainly in the area of cancer. Extending this work to people with advanced dementia provided the Researchers in this study with the opportunity to better understand the role and timing of palliative care in supporting people with learning disabilities and such advanced dementia.

The team held interviews with thirteen focus groups involving staff in six services and one specialist palliative care provider

Emerging from the analysis was the view that specialist palliative care staff identified person-centred care delivery in learning disability was consistent with palliative approaches. Staff but learning disability services did not consider advanced dementia care as ‘palliative care’. It appeared that for both groups there was uncertainty about the role of palliative care at the early stage of dementia, although there was an appreciation of the specialist contribution of palliative care in addressing pain and symptom management

The authors conclude that to successfully extend palliative care principles, philosophy and services to people with learning disabilities and advanced dementia will require a more in-depth understanding of care philosophies and better agreement around the timing and unique contributions of specialist palliative care services.

The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia, McCarron M et al, in Journal of Applied Research in Intellectual Disabilities, 24: 189–198

You can read the executive summary of the research project here

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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