Planning a personalised future with dementia: ‘the misleading simplicity of advance directives’

1. Elizabeth L Sampson
   1. Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London Medical School, London, UK; Barnet Enfield and Haringey Mental Health Trust, London, UK
2. Alistair Burns
   1. Manchester Academic Health Science Centre, University of Manchester, Manchester, UK; Manchester Mental Health and Social Care Trust, Manchester, UK

1. Elizabeth L Sampson Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London Medical School, 1st Floor, Charles Bell House, 67-73 Riding House Street, London, W1W 7EJ, UK. Email: e.sampson@ucl.ac.uk

Advance care planning (ACP) has been defined as a process ‘that usually takes place in anticipation of a future deterioration of a person’s condition, between that person and a care worker’.¹ It is a cornerstone of end-of-life care policy in many countries. Ab initio, it appears a simple and pragmatic intervention to help people consider what their current or anticipated preferences for care in the future might be and subsequently ensure that they are respected. Studies in other life-limiting conditions have demonstrated how ACP can improve outcomes, allowing people to die in their preferred place of care,^2,3 reducing ‘aggressive’ medical interventions near death^2,4 and costs.⁵ ACP also improves outcomes for families, reducing anxiety, depression and post-traumatic stress disorder.^2,4

The number of people diagnosed with dementia is increasing, the condition may significantly shorten life expectancy, and concerns have been raised about the quality of end-of-life care people with dementia receive. Contemporaneously, the dementia care agenda across the world has shifted towards earlier and more timely diagnosis. Given the paucity of disease modifying treatment, it has been suggested that one benefit of diagnosis is that it allows the person to plan for their future care while they still have capacity.⁵

 

In their methodologically rigorous article, Louise Robinson and colleagues explore key issues of ACP for people with dementia in a large representative sample of professionals, some of whom, such as solicitors …