“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2019).
Appropriate management of advanced dementia requires the understanding that it is a life limiting condition without curative treatment and therefore requires palliation; interventions should be chosen carefully to ensure the improvement or maintenance of quality of life. Advance care planning is an important component of dementia care along with the education of the individual, carers and relatives in issues such as artificial nutrition, CPR and other burdensome interventions to facilitate discussions (Kumar & Kuriakose, 2013).
Evidence indicates that a palliative approach is not always undertaken for several reasons, including: the lack of recognition that the person with dementia’s condition is deteriorating and approaching end of life; lack of staff confidence to initiate and discuss palliative care and systemic barriers. The clinical features of end stage dementia are not always recognised by clinicians or carers, leading to sub-optimal end of life care (Potter, Fernando & Humpel, 2013).
It is important to understand that although dementia begins by affecting the brain, as the disease progresses the whole body is affected, therefore changing the focus from active medical treatment to palliative care. It is recognised in the literature and anecdotally that it is beyond the skill of clinicians to give an accurate estimation of how long the patient will live, although research is being done to formulate tools to estimate the lifespan of people with dementia. Disease trajectories for other diseases, such as cancer, are more established and well-defined, whereas dementia there may be a prolonged decline and severe disability will persist for a protracted period of time (Van der Steel, 2014).
The differences in disease process require dementia-specific care strategies which include the consideration of co-morbid disease and developing expertise in managing behavioural problems which may manifest due to unmet physical needs (James & Jackman, 2017). Clinicians and carers also require the ability to anticipate, assess and manage physical and cognitive problems with good communication skills to facilitate communication, not only with the person with dementia but also families and/or carers, to allow them to support any proxy decision making required as well as high burden of care and chronic grief caused by the protracted deterioration of the individual (Amador et al., 2019).
Gaining knowledge in dementia, terminology and the disease trajectory as well as signs and symptoms of deterioration can assist carers and clinicians in anticipating when end of life care should be addressed, such as ensuring the required documentation is in place (i.e. verification of death form) as well as ensuring anticipatory prescribing has taken place or at least been discussed with the prescriber, and superfluous medication has been discontinued (NHS Scotland, 2015). It is important to bear in mind that end of life care for individuals with dementia is often longer than those with other life-limiting illnesses.
Find out more about end of life care through DSDC’s Recognising End of Life in People with Dementia training course.
James, I.A. and Jackman, L. (2017) Understanding behaviour in dementia that challenges: A guide to assessment and treatment. 2nd ed. London: JKP.
Kumar, S.C.T and Kuriakose, J.R. (2013) End-of-life care issues in advanced dementia. Mental Health in Family Medicine, 10, pp. 129-132.
NHS Scotland (2019) Scottish Palliative Care Guidelines. NHSScotland. Available: https://www.palliativecareguidelines.scot.nhs.uk/guidelines/ [accessed on 19/11/2019]
Potter, J.M., Fernando, R. and Humpel, N. (2013) Innovations in Aged Care: Developemnt and Evaluation of the REACH (Recognise End of life And Care Holistically) out in Dementia Toolkit. Australasian Journal of Aging, 32 (4), pp. 241-146.
Van der Steen, Jenny T, Radbruch, L., Hertogh, C.M., de Boer, M.E., Hughers, J.C., Larkin, P., Francke, A.L., Junger, S., Gove, D., Firth, P., Koopmans, R.T. and Volicer on behalf of the European Association for Palliative Care (EAPC). (2014) 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, 28 (3), pp. 197-209.