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24-04-2012 | Psychology | Article

Palliative dementia care lacks advanced planning


Free abstract

MedWire News: End-of-life care for dementia patients in the UK lacks advanced planning and is characterized by many unnecessary acute hospitalizations prior to death, an audit shows.

Using the rapid participatory appraisal method, the reviewers identified barriers in care pathways, which were presented to the stakeholder group, who generated feasible solutions to stimulate change.

In the UK, one in three people over the age of 65 years will die while suffering from dementia.

"Despite this high mortality, clinicians often fail to adopt a palliative or supportive approach, and many people with dementia have poor access to good quality end of life care; services have struggled to meet their needs and provide adequate support for professional and family carers," Elizabeth Sampson (University College London, UK) and colleagues comment.

They therefore performed a rapid participatory appraisal in Haringey local authority in London. With this technique, information is gained from different sources in a study community and the results combined to describe the present delivery of, and possible improvements to, service provision. Researchers and participants then work collaboratively to address issues in specific systems.

The participants were carers of nine people who had died of dementia, as well as health and social care staff. Of the dementia patients, six were cared for in their own home, one in a care home, and two on continuing care wards.

Two-thirds of the patients had a care plan documented in the 6 months prior to death. However, there was only one case where advance care planning discussions had occurred and none had completed any formal advance care planning documents.

Care costs over the 6 months before death were higher in care homes or continuing care (£ 37,029; US$ 59,616; € 45,411) than for those living at home (£ 19,854; US$ 31,964; € 24,348).

Five of the patients required one or more unplanned emergency hospital stays (median length of stay 12 days) with pneumonia and dehydration being the commonest causes of admission. Carers described how the person with dementia often experienced a marked deterioration during admission.

No record was found of the palliative care team being involved in any case and only one person was on an end-of-life care pathway. Nursing staff in the acute setting had limited knowledge or resources to cope effectively with behaviors associated with dementia.

"This work has illustrated that people dying with advanced dementia have complex medical and social needs," Sampson et al comment.

"We involved family carers and a wide range of professionals from health and social care sectors to generate ideas regarding feasible and realistic service improvements, mostly within existing resources."

The research is published in BMJ Supportive & Palliative Care.

MedWire ( is an independent clinical news service provided by Springer Healthcare Limited. © Springer Healthcare Ltd; 2012

By Andrew Czyzewski

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