Written by Raymond H
Dementia is a common condition in the population and is associated with a decline in memory and cognitive function, along with challenging behavioural symptoms (Brodaty et al., 2015). The underlying cause of dementia can vary with Alzheimer’s disease the most common form seen in the United Kingdom (UK) (Wu et al., 2016). Regardless of the dementia subtype, decline in function and worsening of symptoms is associated with advancing age and has a significant impact on the wellbeing of the individual and their family members (Wu et al., 2016). As many patients with dementia are elderly, there is an increasing recognition of the need to provide appropriate end-of-life (EoL) to this patient group when dying or approaching death (Halpern, 2015). This report considers the challenges facing patients with dementia with respect to EoL care and the potential strategies that may be used to meet the needs of this service user group.
The principles of EoL care are to maintain the dignity of the individual, while addressing clinical, social, emotional and psychological needs (Halpern, 2015). The needs of patients approaching death are diverse and include those relating to symptom management (e.g. pain) as well as personal needs and preferences during palliative and EoL care (Dening et al., 2012). It has been shown that patients with dementia have specific needs in the EoL care setting and that these needs may largely go unmet in current practice (Sampson et al., 2018). This includes the need for adequate symptom management, as well as needs relating to advance care planning and documentation of patient preferences (Sampson et al., 2015). Indeed, patients with dementia are the most likely group to lack advanced care directives or planning documents when approaching the end of their life, highlighting inequalities in care planning for this group (Kupeli et al., 2016).
Part of the reason for these unmet needs relates to the clinical characteristics and symptoms experienced by people with dementia, particularly advanced dementia (Dening et al., 2012). Behavioural symptoms and communication challenges may present difficulties to pain assessment and management, leading to the observation that many patients with dementia receiving EoL care do not receive adequate pain relief (Brorson et al., 2014). In addition, many patients may be located in care homes or nursing homes, where the provision of proactive approaches to palliative care is lacking or inadequate (Toscani et al., 2013). This increases the risk of adverse care experiences and the need for hospitalisation, which can negatively impact the life of the patient, increasing the risk of disorientation and infection (Afram et al., 2014). Therefore, management of dementia patients with EoL care needs should take into account the specific challenges seen within this group.
When considering the optimal strategies to meet the needs of this patient group it is important to consider broad approaches to care delivery and fundamental principles of maintaining patient dignity, care quality and safety (Lillyman and Bruce, 2017). Furthermore, a holistic approach should be encouraged to ensure that the needs of patients beyond those relating to symptom management are considered within defined care pathways (Kupeli et al., 2016). A fundamental aspect of delivering EoL care in patients with dementia is the adoption of a person-centred approach (Lillyman and Bruce, 2017). Person-centred care aims to place the individual at the centre of all care decisions, taking into account patient preferences, expectations and needs during the care planning process (Kupeli et al., 2016). There is good evidence to support the use of person-centred care in EoL care, with data suggesting that this approach is associated with more positive care experiences and improvement in symptom management (McCallion et al., 2017).
Application of the person-centred care approach to patients with dementia has the potential to overcome many of the challenges seen in the delivery of EoL care in this setting. Exley et al., (2009) have also highlighted how engaging patients with dementia in early advance care planning provides an opportunity to engage in effective person-centred care at the stage of EoL care decision-making. The principle of advance care planning is that decisions can be made regarding future health decisions when an individual may not be able to effectively communicate those decisions or may lack capacity to make decisions (Brinkman-Stoppelenburg et al., 2014). By engaging patients with dementia in advance care planning at an early stage, when capacity is still present, decision-making at later stages of life and in EoL care may be guided by the wishes of the individual, increasing the person-centred nature of the approach (Exley et al., 2009).
Although advance care planning should be encouraged, it is important to note that person-centred care is not only facilitated by clear decision-making but is representative of the quality of care received and the nature of that care (Goodman et al., 2015). Specifically, compassionate care that is sensitive to the needs of the patient is essential to minimise distress and achieve positive care outcomes (Crowther et al., 2013). Strategies to promote compassionate care and behaviours consistent with person-centred care are needed within care homes, nursing homes and in hospital wards to ensure patients with dementia receive optimal care at all stages of their condition, including when dying (Goodman et al., 2015). These strategies should focus on promoting optimal communication between staff and patients, designing care environments to ensure patient safety and comfort, and ensuring specific needs of the patient group can be met (McGreevy, 2015). Training for staff in communication techniques and how to manage symptoms specific to dementia are important to ensure a strong patient-provider relationship that can support compassionate care during EoL care (Crowther et al., 2013).
In addition to the general adoption of a person-centred approach to care, specific standards of care have been devised for EoL care in the context of dementia (Lillyman and Bruce, 2017). These standards encompass seven main points: communication, coordination, control of symptoms, continuity of care, continued learning, carer support, and care in the dying phase (Mitchell et al., 2016). Although a detailed discussion of each of these domains is warranted in the context of EoL care in patients with dementia, it is important to consider the overarching themes and commonalities that link these standards. For instance, continuity of care and coordination of care services require optimal communication between professionals and settings to ensure a united approach to managing EoL care needs (Lee et al., 2015). Organisational support, clear guidelines and role definition are all essential in facilitating coordination of care for the individual patient (Mitchell et al., 2016). Similarly, the potential to provide optimal symptom control reflects continued learning and professional development among nursing home staff and wider healthcare professionals (Mitchell et al., 2016). Interventions at the EoL should be evidence-based and should be consistent with available guidelines, while staff members should take responsibility for ensuring that palliative processes are proactively implemented according to the guidelines available (Halpern, 2015).
Of particular importance in the context of dementia care is the need to consider the role of carers and family members during EoL care provision (Mitchell et al., 2016). People with dementia often have complex needs and family members or carers may have experienced a high burden of care as time progressed and dementia symptoms became more pronounced and limiting for performance of activities of daily living (Dixon et al., 2018). Accordingly, carers are often experienced and knowledgeable regarding the specific needs of the individual patient and should be actively involved in EoL care planning, in conjunction with the wishes of the patient (i.e. advance care plans) (Dixon et al., 2018). Furthermore, healthcare professionals should be available to provide emotional and practical support to carers and family members during this difficult period (Mitchell et al., 2016). Bereavement support for family members following the death of the patient should also be considered and facilitated by healthcare staff in this context (Peacock, 2013).
During the dying phase, the use of specific care pathways or frameworks can provide guidance to staff and clarity to family members regarding the necessary steps to achieve optimal care (Mitchell et al., 2016). Cessation of non-essential interventions and therapies, medication to manage symptoms associated with dying, and the spiritual care needs of the patient and family members all become key priorities guiding the EoL process (Mitchell et al., 2016). Although specific caveats should be considered for the patient with dementia, reflecting the symptoms of dementia and challenges associated with capacity and care planning, a universal approach to all patients should persist in maintaining dignity, respect and autonomy during EoL care (Guo and Jacelon, 2014).
In conclusion, EoL care in patients with dementia is a complex process and remains an important challenge in contemporary healthcare. Adopting a person-centred approach is fundamental to meeting the diverse needs of this patient group towards the end of life. Furthermore, healthcare staff should work collaboratively and transparently in order to guide patients and family members through a complex care process. The transition from routine care to EoL care should be managed sensitively and based on the best available evidence to ensure patients receive the best possible care in practice.
Afram, B., Stephan, A., Verbeek, H., Bleijlevens, M. H., Suhonen, R., Sutcliffe, C., & Meyer, G. (2014). Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. Journal of the American Medical Directors Association, 15(2), 108-116.
Brinkman-Stoppelenburg, A., Rietjens, J. A., & Van der Heide, A. (2014). The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine, 28(8), 1000-1025.
Brodaty, H., Connors, M. H., Xu, J., Woodward, M., Ames, D., & PRIME Study Group. (2015). The course of neuropsychiatric symptoms in dementia: a 3-year longitudinal study. Journal of the American Medical Directors Association, 16(5), 380-387.
Brorson, H., Plymoth, H., Örmon, K., & Bolmsjö, I. (2014). Pain relief at the end of life: nurses’ experiences regarding end-of-life pain relief in patients with dementia. Pain Management Nursing, 15(1), 315-323.
Crowther, J., Wilson, K. C., Horton, S., & Lloyd-Williams, M. (2013). Compassion in healthcare–lessons from a qualitative study of the end of life care of people with dementia. Journal of the Royal Society of Medicine, 106(12), 492-497.
Dening, K. H., Greenish, W., Jones, L., Mandal, U., & Sampson, E. L. (2012). Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Supportive & Palliative Care, 2(2), 103-107.
Dixon, J., Karagiannidou, M., & Knapp, M. (2018). The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: a systematic review and critical discussion. Journal of Pain and Symptom Management, 55(1), 132-150.
Exley, C., Bamford, C., Hughes, J., & Robinson, L. (2009). Advance Care Planning: An opportunity for person-centred care for people living with dementia. Dementia, 8(3), 419-424.
Goodman, C., Froggatt, K., Amador, S., Mathie, E., & Mayrhofer, A. (2015). End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliative Care, 14(1), 42-52
Guo, Q., & Jacelon, C. S. (2014). An integrative review of dignity in end-of-life care. Palliative Medicine, 28(7), 931-940
Halpern, S. D. (2015). Toward evidence-based end-of-life care. New England Journal of Medicine, 373(21), 2001-2003.
Kupeli, N., Leavey, G., Moore, K., Harrington, J., Lord, K., King, M., & Jones, L. (2016). Context, mechanisms and outcomes in end of life care for people with advanced dementia. BMC Palliative Care, 15(1), 31-39
Lee, R. P., Bamford, C., Exley, C., & 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(1), 32-44
Lillyman, S., & Bruce, M. (2017). Caring for people with dementia at end of life. Nursing And Residential Care, 19(6), 331-334.
McCallion, P., Hogan, M., Santos, F. H., McCarron, M., Service, K., Stemp, S., & Janicki, M. P. (2017). Consensus statement of the International Summit on Intellectual Disability and Dementia related to end‐of‐life care in advanced dementia. Journal of Applied Research in Intellectual Disabilities, 30(6), 1160-1164.
McGreevy, J. (2015). Dementia and the person-centred care approach. Nursing Older People, 27(8), 1-10
Mitchell, G., Agnelli, J., McGreevy, J., Diamond, M., Roble, H., McShane, E., & Strain, J. (2016). Palliative and end of life care for people living with dementia in care homes: part 1. Nursing Standard, 30(43), 1-10
Peacock, S. C. (2013). The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative & Supportive Care, 11(2), 155-168.
Sampson, E. L., White, N., Lord, K., Leurent, B., Vickerstaff, V., Scott, S., & Jones, L. (2015). Pain, agitation, and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study. Pain, 156(4), 675-685
Sampson, E. L., Candy, B., Davis, S., Gola, A. B., Harrington, J., King, M., & Omar, R. Z. (2018). Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliative Medicine, 32(3), 668-681.
Toscani, F., Di Giulio, P., Villani, D., Giunco, F., Brunelli, C., Gentile, S., & van der Steen, on behalf of the End of Life Observatory–Prospective Study on Dementia Patients Care Research Group, J. T. (2013). Treatments and prescriptions in advanced dementia patients residing in long-term care institutions and at home. Journal of Palliative Medicine, 16(1), 31-37.
Wu, Y. T., Fratiglioni, L., Matthews, F. E., Lobo, A., Breteler, M. M., Skoog, I., & Brayne, C. (2016). Dementia in western Europe: epidemiological evidence and implications for policy making. The Lancet Neurology, 15(1), 116-124.