End of Life Care in Frailty: Dementia
The aim of this guidance series is to support clinicians and others to consider the needs of frail older people as they move towards the end of their lives and help them to provide high quality care.
This chapter addresses specific issues which may arise in people living with dementia towards the end of life. Please click here to view the other chapters in this series.
Dementia is a condition that kills. According to one study,1 the average life expectancy from diagnosis to death is 4.5 years, and average survival rate in this study varied from a high of 10.7 years for the youngest patients (65-69 years) to a 3.8 years for the people diagnosed after their 90th birthday.
People may die with dementia because of the dementia itself (which may lead to poor mobility, poor nutrition, poor appetite, etc) – but many more die with complications, which are more likely to result in death in someone with dementia than in healthy individuals.
One example is pneumonia, which has poorer survival among those with dementia, as they are more likely to present late, forget to comply with treatment or resist treatment altogether, and may not engage in exercise, rehabilitation and other aspects of care. Outcomes are worse for people who struggle to understand that they are ill, why they are ill and what they need to do about it.
Despite this poor outlook, we do know that the prognosis of dementia in any individual is difficult to determine. Deterioration can be sudden, unpredictable, related to current illnesses, and also caused by extraneous factors such as carer changes, broken down care plans. The data set which the National Institute for Health and Care Excellence (NICE) used to inform its guidance on end of life care2 was very clear that diagnosing and prognosticating the last few days of life is very hard, and harder in frailty and dementia than it is in cancer. We know that we do not know.
Needs versus prognosis
In many ways, for those who have dementia, this is a very helpful message. Each day is to be lived for what it is, despite difficulties and disabilities. Most families and friends of people with dementia are just glad that their loved one is around, and can be supported and cared for.
The style of care as dementia progresses cannot be prognosis based, as we do not know the prognosis. It must therefore be needs based, with sensible and appropriate care provided according to need and the ability to participate in care and also to benefit from it (see European Association of Palliative Care Statement).3
The need for appropriate limitation of care springs easily from these requirements. For example; a diagnosis of moderately severe or severe dementia combined with distress, physical frailty and or a progressive co-morbidity indicates the need for a more palliative approach.4 Once it is clear that such an approach is needed, the key priorities must be to reduce distress and enhance comfort.
Common symptoms seen in the last weeks of life in people with advanced dementia include pain, dyspnoea and agitation. Evidence suggests that these symptoms are persistent, and people with advanced dementia are vulnerable to long-term suffering from poor identification and management of such symptoms,5 all of which need appropriate palliation.
Distress in dementia
An important part of good dementia care is to recognise that ‘challenging behaviour’ is a harmful concept in advanced dementia care. While challenging behaviour is clearly a problem for staff, patients may be appropriately challenging. For example, most people faced with someone trying to undress them without explanation and without warning (as a carer might do to someone with dementia) would be likely to challenge this action.
Similarly, if care is poor, if pain is severe, or if someone is hungry, depressed or hallucinated then they may well display some behaviours that staff find difficult. ‘Challenging behaviour’ is too often treated with antipsychotics. Policies frequently state that the alternative to antipsychotic medicines is non-pharmacological strategies. However it may be that the cause of the challenging behaviour does need medication (for example analgesia for pain or laxatives for constipation).
A much better way to think this is to see it as distress. Distress in dementia is common, and requires a differential diagnosis of its cause with treatment aimed at the cause.
|Signs of distress||Differential diagnoses of distress|
Assessment of the causes of distress will require good conversations (people with advanced dementia are far more able to tell us what is wrong than we often realise) and may also involve examination and appropriate investigations.
Treatments of distress are therefore directed at the cause, noting that infection is a common underlying cause of several of the above - but not the only cause, and is not diagnosed by dip sticking urine alone.
Building carer resilience
Supporting carers while they support people with dementia is central to the possibility of good outcomes in dementia care. The Kings Fund6 found that being available, being supportive and enabling carers to believe that they will be supported in a crisis is a central issue. Successful models of advanced dementia care at home are effective because they work with carers and support them, alongside providing expertise and knowledge of advance dementia and advanced frailty care.
End of life indicators in dementia
End of life care in advanced dementia
The progression of dementia is as unpredictable as it is inevitable. As the illness progresses, needs evolve. Fortunately, some of the most distressing symptoms may subside with progression of the dementia. Advancing dementia sometimes brings remissions and improvements in symptoms such as wandering. Good palliative care of dementia is about living well and palliating symptoms in those who suffer so that they can live better. We look after, care for and treat people with dementia throughout their illness until they die. Intensive medical care carries more problems for a person with dementia - in particular, hospitalisation can rapidly cause physical deconditioning, distress and delirium, with prolonged recovery and a heavy impact on quality of life. Therefore talking about the goals of care and discussing drawbacks and benefits of treatment becomes even more crucial.
The most important therapeutic agent for the person with dementia is so often their carer, so it is vital to involve them as much as possible in treatment decisions and in the person’s care, particularly in unfamiliar places like hospitals.
Care towards the end of life, or just good palliative care, appear far better descriptors of what we must do. We must help people to live well until they die, and not simply see the outcome of what we do as death.
- Xie J, Brayne C, Matthews FE and the Medical Research Council Cognitive Function and Ageing Study collaborators. Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up BMJ 2008; 336:258-262.
- National Clinical Guideline Centre. Care of dying adults in the last days of life. Clinical guideline NG31. 2015. Available at: https://www.nice.org.uk/guidance/ng31/evidence/full-guideline-pdf-224061...
- Van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Jünger S, Gove D, Firth P, Koopmans RT. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative medicine 2014;28(3):197-209.
- Gibson L, Hughes J, Jordan A, Matthews D, Regnard C, Sutton L, Treloar A. The Power of Partnership . Palliative Care in Dementia. 2009. National Council for Palliative Care.
- Sampson EL, Candy B, Davis S, Gola AB, Harrington J, King M, Kupeli N, Leavey G, Moore K, Nazareth I, Omar RZ. Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliative medicine 2018;32(3):668-81.
- Sonola L, Thiel V, Goodwin N, Kodner D. Oxleas Advanced Dementia Service. Supporting carers and building resilience. 2013. The Kings Fund.