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).
With recent elections and new parties mandates we have heard much about the ‘dementia tax’. Not specifically aimed at this group but used as an example of how care is costly, not only in care homes but also providing good care at home. This is in relation to financial costs, resources, time and personal input for the person and their family. Often this care is left to family members and informal carers to cope and seek information for themselves, especially in the latter stages of their journey.
Areas that need some discussion and help with include the potential danger of too much intervention at the end of life (such as tube, enteral feeding) with little benefit to the individual or, on the other hand, too little intervention (such as poor pain control, dehydration and malnutrition, emotional or social neglect, absence of spiritual care and support of families). Both the over burdensome treatment and/or underuse of treatment noted above can result in discomfort and a poor death experience for the person and their families. As health care professionals we need to understand the persons needs and get it right for them and their families.
Knowing what is in the best interest for the person can include educating those caring for the person in the disease trajectory and signposting them to resources available that can help. Useful information can be found at the Alzheimer’s Society at https://www.alzheimers.org.uk/info/20046/help_with_care/80/end_of_life_care/2 . It is important to note that this information is not only for those with Alzheimer’s disease but for those living and dying with any type of dementia. They also include information on after care for the people left following the death of their loved ones from this disease.
To prevent over burdensome treatment the risks and benefits of any proposed treatment should be contextualised within the broader understanding of frailty and prognosis balancing the potential non-beneficial interventions against the under treatment of symptoms (Van der Steen 2010). There are some treatments that at end of life for the person with dementia such as the use of antibiotics have been found to not prolong life or improve comfort at this stage (Congedo et al 2010) especially as older people are particularly at risk of adverse effects of drug therapy. Therefore solid evidence to guide optimal pharmacotherapy should be undertaken (Cruz Jentroff et al 2012). Other treatments that can increase the level of suffering include external feeding (Moorhouse and Mallery 2012) and painful investigations.
Too little or underuse of treatment can be a result of the presentation of symptoms which can be misunderstood or comorbidities that mask each other (Bracegirdle 2012). This may include insufficient use of medications for pain where this cannot be verbalised by the person dying with dementia. Therefore we need to find new ways of assessing pain for people who cannot verbalise their needs.
Although we cannot wave a magic wand and provide all the resources for people and their families, comfort should be an overriding goal of care along with maintaining dignity at this stage of their journey (Gillick 2012). It is wrong to assume that one solution or intervention suites everyone (Hennings et al 2013) and therefore a person-centred care approach is needed to meet their needs and provide the care they all deserve.
Alzheimer’s Society (2014) Dementia UK update. Alzheimer’s Society, London
Bloomer M, Tan H., O’Connor, Digby R (2011) Managing terminal dementia. Australian Nursing Journal 19 (9): 36-37
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Department of Health (2013) Dementia: A state of the nation report on dementia care and support in England. DoH, London.
Gillick MR (2012) Doing the right thing: A Geriatrician’s Perspective on Medical Care for the Person with Advanced Dementia. Journal of Law, Medicine & Ethics. Spring: 51-56
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Torke, AM (2014) Building the evidence base for palliative care and dementia. Palliative Medicine 28(3) 195– 196
van der Steen JT (2010) Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer’s Disease. 22 (2010): 37–55 37