End-of-Life Care in Patients with Advanced Dementia

Abstract

Identifying the end-of-life stage in dementia is often difficult. A recently developed model using indicators of survival probability can aid in estimating life expectancy. Person-centred care, an essential aspect of end-of-life care for people with dementia, takes their medical, psychological, social and spiritual concerns into account. Although the disease trajectory varies depending on comorbidities and type of dementia, dementia follows a pattern of functional decline, leading to considerable frailty and deterioration in the last months of life. Good comfort care, as the most appropriate care goal in this disease stage, covers: person-centred care, optimal treatment of symptoms and providing comfort, psychosocial and spiritual support, family care and involvement, communication and shared decision making, setting care goals, advance care planning and continuity of care. Physical symptoms, most frequently pain and shortness of breath, also need to be addressed. Psychological discomfort may be overlooked or medicalised, or may result in agitation, which often occurs at the end of life and may be related to other causes, e.g. physical discomfort or illness. A stepwise approach combining medical and psychological interventions appears to be most useful for these symptoms. In the social domain, the cornerstones of good person-centred care are family support, educating the family, family involvement in caregiving and bereavement support. Basic spiritual support should include determining religious affiliation and involvement, particularly in terms of familiar religious rituals, artefacts and symbols, as well as the narrative of the patients’ life, spiritual reminiscing serving as a way to explore this, also in severe dementia. Advance care planning and a three-step systematic approach to shared decision making may help in providing person-centred care that maximises comfort for the patient and families at the end of life. Similar to other phases of the disease, measurement instruments are useful and may help patients to non-verbally express their level of comfort. Good instruments are available for quality of care, dying, measuring pain and spirituality, but also physician communication with family caregivers and staff knowledge on palliative care.