Death and preferred end of life care can be a difficult discussion for any individual living with terminal illness. However, when that conversation is with someone diagnosed with dementia – and therefore, may not have the mental capacity to plan and organise for the future – it can become a lot more challenging.

Advanced Care Planning (ACP) is instrumental in ensuring a patient with dementia – and any other individual living with a life-limiting illness – has the right care and support in place to enable them to live their last days in peace and dignity. Yet, despite its obvious benefits, the responsibility of ACP doesn’t directly lie with one specific healthcare professional. Instead, it is up to any healthcare professional to raise the conversation when they think it is most appropriate for the individual.

‘Sorrow that finds no vent in tears may make other organs weep’

Sir Henry Maudsley, 1835 – 1918

 According to the British Pain Society, almost 10 million Britons suffer pain almost daily resulting in a major impact on their quality of life and more days off work at a cost estimated at around £5billion per annum, with around 20% of all new consultations involving pain. Long term pain is both disabling and distressing. The story of Gill Pharoah, a former palliative care nurse who passed away at the age of 75 at an assisted dying clinic in Switzerland in 2015 with chronic back pain raises important questions about euthanasia and the traumas that can come with old age not just in the context of terminal illness, but also for conditions which can ruin people’s quality of life. It also raises important questions about ageism and how society values elderly people.

Sue Lillyman, IAH Trustee

With dementia noted as the leading cause of deaths in England and Wales in 2015 (Office of National Statistics 2016) and with approximately 860,000 people living with dementia, which is still estimated to rise to 1,142,677 by 2025 (Alzheimer’s Society 2014) there is a need for people to discuss, prepare and provide optimal care for people with dementia at the end of life. Everyone has a fundamental right to die with dignity, be safe and protected from harm (DoH 2013) but, as noted by some researchers, the traditional palliative care model used for many other long-term conditions does not fit people dying with, and from, dementia (Bloomer et al 2011). Therefore, it is timely that we review specific needs for this group including behavioural concerns, discussions in relation to preparing for end of life, difficulty re placement of care, carer burden and over burdensome and/or under treatment in our discussions and education (Torke et al 2010).