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Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention


Sampson, Elizabeth L., Jones, Louise, Thuné-Boyle, Ingela C. V., Kukkastenvehmas, Riitta, King, Michael, Leurent, Baptiste, Tookman, Adrian, Blanchard, Martin R.


Palliative Medicine, Volume: 25, No.: 3, Pages.: 197-209

Year of Publication



Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer-patient dyads were randomized to ‘usual care’ or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further.;

Bibtex Citation

@article{Sampson_2011, doi = {10.1177/0269216310391691}, url = {}, year = 2011, month = {jan}, publisher = {{SAGE} Publications}, volume = {25}, number = {3}, pages = {197--209}, author = {E. L. Sampson and L. Jones and I. C. Thune-Boyle and R. Kukkastenvehmas and M. King and B. Leurent and A. Tookman and M. R. Blanchard}, title = {Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention}, journal = {Palliative Medicine} }


adult, advance care planning, advanced, aged, aged, 80 and over, care, caregivers, deglutition disorders, dementia, feasibility studies, female, humans, male, middle aged, nursing, pain, palliative care, patient selection, pilot projects, plan, quality of life, questionnaires

Countries of Study


Types of Dementia

Dementia (general / unspecified)

Types of Study

Randomised Controlled Trial

Type of Outcomes

Carers’ Mental Health, Quality of Life of Carer, Satisfaction with care/services

Type of Interventions

End of Life Care

End of Life Care

Other, Palliative Care