Dementia is a progressive disease for which currently there is no cure. Treatment options are limited to medication aimed at slowing down the cholinergic degeneration that occurs in the brain at the onset of dementia (Roy et al., 2016). However, these treatments are limited and are only used with the small population of those diagnosed specifically with Alzheimer’s disease or mixed type dementia.
Due to limitations in identification and treatment, it is anticipated that one in three individuals over the age of 65 will die with dementia (Van der Steen et al., 2014). There is a growing recognition that the end of life care for people with dementia should be equal to the care of those with other life limiting conditions: those that already receive defined end-of-life planning and support.
Palliative care is routinely embedded in the care of terminal and life-limiting conditions (Sawatzky et al., 2016), yet evidence indicates that end-of-life and palliative care is often overlooked for patients with dementia (Candy et al., 2015). There is uncertainty about access to hospice care for patients with dementia or the availability of such care (Hospice UK, 2015). Further, patients with dementia are less likely to be prescribed anticipatory end-of-life medications (Kinley et al., 2013; Van Den Noortgate et al., 2016).
The palliative care movement originated from progressive exploration and research into the care of individuals with cancer and therefore, traditional models of palliative care have focused on advanced disease and symptom management for those with cancer (Kelley and Morrison, 2015). The hospice movement, founded in 1967, was driven by a paucity of specialist environments in which the terminally ill and dying cancer patients could receive a level of care that was dignified and served to address the physical, psychological and spiritual components of dying (Smith et al., 2014). Over the last four decades, the hospice and palliative care movement has provided a backdrop for the development of national palliative care organisations which serve to unify and regulate the provision of end-of-life care in the UK (NPELCP, 2015). However, while these organisations were established on the principles of cancer care, it may be questioned whether the requirements of patients with dementia are able to be served appropriately by these organisations.
In the UK, care for patients with dementia was first highlighted in the publication of the National Dementia Strategy (DOH, 2009) which emphasised the need for end-of-life care to be improved. It was recommended that in order to achieve this, the principles set out in the National End of Life Strategy (DOH, 2008) should be incorporated into the development of services at local levels in order to improve the quality of end-of-life care for patients with dementia. However, it needs to be noted that this recommendation was based on a strategy used by a palliative care organisation according to principles of care of those with cancer. There could be an issue with the specialist requirements of patients with dementia and that these may be negated by the implementation of these recommendations.
There is a large body of evidence that identifies the challenges in prognosticating end of life in those with dementia (Goodman et al., 2010; Alzheimer’s’ Society, 2014; Robinson et al., 2014; Sekerak and Stewart, 2014; Lee et al., 2015; RCP, 2015) and the reason for this relates specifically to the trajectory of disease progression in dementia. In dementia, the individual begins to experience lower levels of functioning over a long period of time. As the condition progresses, the patient with dementia faces comprehensive decline in physical, psychological, social, emotional and functional ability (Kinnaird, 2015) but this decline can be sustained over a period from one-and-a-half years to over five years (Mitchell et al., 2009). In contrast, the trajectory for cancer is that individuals at the end of life are able, in most cases, to sustain a high level of functioning over a long period of time. As the disease progresses, in the last weeks/days of life there would be a marked decline in functioning with death occurring relatively quickly (Thomas, 2010).
Another issue to consider is that the patient with dementia may actually die of secondary complications, making prognostication for the end of life more challenging.
Evidence demonstrates the following complications that may arise because of the dementia:
During the severe phase, patients with dementia may experience problems with recognising food, maintaining co-ordination in order to feed themselves in addition to developing swallowing and chewing difficulties (Aselage and Amella 2010; Chang, 2012; Stone, 2014). These challenges increase the risk of malnutrition and aspiration problems (Stone, 2014).
Figure 1. – The progression and trajectory of cancer versus dementia (Thomas, 2010)
Research by Brunnstrom and Englund (2009) and supported by others (Brown et al., 2012; Sandvide et al., 2015) has identified that bronchopneumonia is a key contributor to death in patients with dementia. The aspiration of food also contributes to death (Ebihara et al., 2016) and the likelihood of this occurring is raised because of the dietary and nutritional challenges faced by the patients with dementia towards the end of life.
Other factors that contribute to death include: cardiovascular and circulatory complications, digestive and genitourinary diseases and also falls/accidental injury (Desesquelles et al., 2014; James et al., 2014).
Pain is often not identified in patients with dementia and is therefore is undertreated at the end of life. One of the reasons for this is that the central nervous system is compromised because of the dementia, leading to a lack of ability to interpret, register and perceive pain (Cole et al., 2010). Another (more universally recognised) explanation for the poor recognition of pain in those with dementia is attributed to an inability to verbalise that they are in pain and behaviour such as agitation, restlessness and vocalisation are misinterpreted as being symptoms of dementia rather than signs of pain (Bracegirdle, 2012; Achterberg et al., 2013; Karlsson et al., 2014; Guerriero et al., 2016). The difficulty in identifying the presence of pain in patients with dementia at the end of life may account for why pain medication is underprescribed for this population.
Ageing is often accompanied by the onset of health conditions which may cause pain (Scherder and Plooij, 2012). These conditions include arthritis and other musculoskeletal disorders and neuropathic pain as a result of a stroke or the onset of diabetes. Dementia is also a condition which independently will contribute to pain. Patients who are bedbound may develop pressure areas or be left to lie in uncomfortable positions. Weight loss may cause changes to gum density resulting in ill-fitting dentures, causing sores. The side effects of medications may cause constipation resulting in pain and discomfort. It is also important to recognise that in advanced and severe dementia, lack of movement may result in loss of muscle tone, leading to the development of painful contractures (Riachi, 2016; Arnao et al., 2016).
Thus, it is apparent that those with dementia, especially in the advanced and severe stages, may experience severe pain for any number of reasons. Their inability to communicate that they are in pain results in many patients with dementia experiencing prolonged periods of untreated pain.
Specific guidance is available for those caring for the dying in the last days of life (NICE, 2015). A key feature of this publication is to ensure the needs of the dying are addressed so that the experience is as positive and comforting as possible for patients and those around them. These palliative principles, however, relate more to individuals with cancer than those with dementia and other non-malignant conditions. Unfortunately for older people with dementia, national guidelines have yet to be developed that will offer care commissioners and providers with clear evidence on how to address the needs of the dying patient with dementia.
Achterberg, WP. Pieper, MJ. van Dalen-Wok, AH. de Waal, M. Husebo, BS et al., 2013. Pain management in patients with dementia. Clinical Interventions in Ageing. 8, 1471-1482.
Alzheimer’s Society. 2014. Living and dying with dementia in the UK: Barriers to care. London, Alzheimer’s Society UK.
Arnao, A. Domenico, V. Raimondo, D. Tuttolomondo, A and Pinto, A. 2016. Neurotrophic and neuroprotective effects of muscle contraction. Current Pharmaceutical Design. 22(24), 3749-3763.
Aselage, MB and Amella, EJ. 2010. An evolutionary analysis of mealtime difficulties in older adults with dementia. Journal of Clinical Nursing. 19(1–2), 33–41.
Bracegirdle, L. 2012. A tormented death: End of life care for people with dementia. British Journal of Nursing. 21(12), 723-727.
Brown, M. Sampson, E. Jones, L and Barron, A. 2012. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliative Medicine. 27(5), 389-400.
Candy, B. Elliott, M. Moore, K. Vickerstaff, V. Sampson, E and Jones, L. 2015. UK quality statements on end of life care in dementia: A systematic review of research evidence. BMC Palliative Care. 14(51). DOI 10.1186/s12904-015-0047-6.
Chang, CC. 2012. Prevalence and factors associated with feeding difficulty in institutionalized elderly with dementia in Taiwan. The Journal of Nutrition, Health & Aging. 16(3), 258–61.
Department of Health (DOH). 2008. End of Life Care Strategy Promoting high quality care for all adults at the end of life. London, DOH.
Department of Health (DOH). 2009. Living well with dementia: A National Dementia Strategy. London, DOH.
Desesquelles, A. Demuru, E and Salvatore, MA. 2014. Mortality from Alzheimer’s disease, Parkinson’s disease, and dementias in France and Italy: a comparison using the multiple cause of-death approach. Journal of Aging and Health. 26, 283–315.
Ebihara, S. Sekiya, H. Miyagi, M. Ebihara, T and Okazaki, T. 2016. Dysphagia, dystussia, and aspiration pneumonia in elderly people. Journal of Thoracic Disease. 8(3), 632-639.
Guerriero, F. Sgarlata, C. Maurizi, N. Francis, M. Rollone, M et al., 2016. Pain management in dementia: so far, not so good. Journal of Geriatrics and Gerontology. 64, 31-39.
Goodman, C. Evans, C and Wilcock J. 2010. End of life care for community dwelling older people with dementia: an integrated review. International Reviews in Geriatric Psychiatry. 25, 329–37.
Hospice UK. 2015. Hospice enabled dementia care: the first steps: a guide to help hospices establish care for people with dementia, their families and carers. London, Hospice UK.
James, BD. Leurgans, SE. Hebert, LE. Scherr, PA. Yaffe, K. and Bennett, DA. 2014. Contribution of Alzheimer disease to mortality in the United States. Neurology. 82, 1045–50.
Karlsson, C. Ernsth-Bravell. M, Ek, K. and Bergh, I. 2014. Home health-care teams’ assessments of pain in care recipients living with dementia: A Swedish exploratory study. International Journal of Older People Nursing. 10, 190-200.
Kelley, AS and Morrison, RS. 2015. Palliative care for the seriously ill. New England Journal of Medicine. 373, 747-755.
Kinley, J. Stone, L and Hockley, J. 2013. Anticipatory end-of-life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes. End of Life Journal. 3(3), 1-6.
Kinnaird, L. 2015. Advanced dementia model. Edinburgh, Alzheimer’s Society Scotland.
Lee, RP. Bamford, C. Exley, C and Robinson L. 2015. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC Palliative Care. 14(32). DOI: 10.1186/s12904-015-0028-9
Mitchell, SL. Teno, JM. Kiely, DK. Shaffer, ML. Jones, RN. Prigerson, HG. Volicer, L. Givens, JL and Hamel, MB. 2009. The clinical course of advanced dementia. New England Journal of Medicine. 361(16), 1529-1538.
National Institute for Health and Care Excellence (NICE). 2015. Care of dying adults in the last days of life. London, NICE.
National Palliative and End of Life Care Partnership (NPELCP). 2015. Ambitions for palliative and end of life care: A national framework for local action 2015-2020. London, NPELCP.
Riachi, M. 2016. How pharmacists can help their patients. Canadian Pharmacological Journal. 149(2), 67-69.
Roy, R. Niccolini, F. Pagano, G and Politis, M. 2016. Cholinergic imaging in dementia spectrum disorders. European Journal of Nuclear Medicine and Molecular Imaging. 43, 1376-1386.
Royal College of Physicians (RCP). 2015. Acute care resource: End-of-life care in the acute care setting. London, RCP.
Sandvide, A. Hanson, E. Abreu, W. Jackson, G. Waugh, A. MacRae, R and Tolson, D. 2015. Experiences of Advanced Dementia: A Literature Review. [Unpublished] University of the West of Scotland, Paisley.
Sawatzky, R. Porterfield, P. Lee, J. Dixon, D. Lounsbury, K. Pesut, B et al., 2016. Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care. 15(5). DOI 10.1186/s12904-016-0076-9
Scherder, EJ and Plooij, B. 2012. Assessment and management of pain, with particular emphasis on central neuropathic pain, in moderate and severe dementia. Drugs and Aging. 29, 701-706.
Sekerak, RJ and Stewart, JT. 2014. Caring for the patient with end stage dementia. Annals of Long Term Care. 22(12), 89-99.
Smith, S. Brick, A. O’Hara, S and Normand, C. 2014. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliative Medicine. 28, 130-150.
Stone, L. 2014. Eating/feeding issues in dementia: Improving the dining experience. End of Life Journal. 4(1), 1-7.
Thomas, K. 2010. Gold Standards Framework: The GSF Prognostic Indicator Guidance. End of Life Journal. 4(1), 62-64.
Van Den Noortgate, NJ. Verhofstede, R. Choen, J. Piers, RD. Deliens, L and Smets, T. 2016. Prescription and deprescription of medication during the last 48 hours of life: Multicentre study in 23 acute geriatric wards in Flanders, Belgium. Journal of Pain and Symptom Management. 5296), 1020-1026.
Van der Steen, JT. Radbruch, L. Hertogh, CM. de Boer, MJ, Hughes, JC et al., 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, 197-209.
Copyright © 2005-2018 Ivory Research Co Ltd. All rights reserved. All forms of copying, distribution or reproduction are strictly prohibited and will be prosecuted to the Full Extent of Law.