Understanding the factors associated with patients with dementia achieving their preferred place of death: a retrospective cohort study

Abstract

Background dying in one’s preferred place is a quality marker for end-of-life care. Little is known about preferred place of death, or the factors associated with achieving this, for people with dementia. Aims to understand preferences for place of death among people with dementia; to identify factors associated with achieving these preferences. Population adults with a diagnosis of dementia who died between December 2015 and March 2017 and who were registered on Coordinate My Care, an Electronic Palliative Care Coordination System. Design retrospective cohort study. Analysis multivariable logistic regression investigated factors associated with achieving preferred place of death. Results we identified 1,047 people who died with dementia; information on preferred and actual place of death was available for 803. Preferred place of death was most commonly care home (58.8%, n = 472) or home (39.0%, n = 313). Overall 83.7% ( n = 672) died in their preferred place. Dying in the preferred place was more likely for those most functionally impaired (OR 1.82 95% CI 1.06–3.13), and with a ceiling of treatment of ‘symptomatic relief only’ (OR 2.65, 95% CI 1.37–5.14). It was less likely for people with a primary diagnosis of cancer (OR 0.52, 95% CI 0.28–0.97), those who were ‘for’ cardio-pulmonary resuscitation (OR 0.32, 95% CI 0.16–0.62) and those whose record was created longer before death (51–250 days (ref <50 days) OR 0.60, 95% CI 0.38–0.94). Conclusions most people with dementia want to die in a care home or at home. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning.

Palliative Care in Advanced Dementia

“…Risk factors to for death during hospital stay were male gender, higher age, acute admission and Alzheimer's disease (33). Dying at home or in a care home as preferred place of death was associated with higher functional impairment and treatment goal to relief symptoms only (34). In the United States, a recent analysis revealed a decrease in deaths of people with dementia in nursing homes and hospitals and an increase in the number of deaths at home or hospice facilities (35).…”

The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

“…However, caring for someone with dementia is a challenging role and over-reliance on family carers can impact on their physical and psychological health (Kneebone and Martin, 2003). The end of life can be a particularly challenging time for family carers physically and emotionally (Peacock, 2012), many people with dementia wish to remain at home with their family even when care at home may not be the best place (Nakanishi and Honda, 2009;Wiggins, Droney, Mohammed, Riley, & Sleeman, 2019) . At this time family carers can find it difficult to leave the home to access support.…”

Place of Death for Persons With and Without Cognitive Impairment in the United States

“…This is unfortunate, as the findings of this study indicate that place of death should be a central component of EOLC discussions for persons with and without cognitive impairment. As there is frequently incongruence between preferred and actual place of death, 5 it is critical that providers in hospitals, long‐term care, and palliative care settings are trained to provide person‐centered care, 41 particularly as provider knowledge of preferred place of death is associated with achieving that goal 42 . It is also important that, in light of this incongruence, older adults allow for a degree of flexibility in end‐of‐life serving planning 43 .…”