Challenges to improving end of life care of people with advanced dementia in the UK

Abstract

The end of life care received by patients with advanced dementia and their carers is of increasing importance as the incidence of dementia is set to rise in the next 30 years. Currently, inappropriate admissions to hospital are common in the UK and patients are less likely to be referred to palliative care services, receive less pain control but undergo more invasive interventions compared to their cognitively intact counterparts. Patients and families are seldom informed of the terminal nature of dementia and advance care planning discussions are rare. The aim of this study was to improve the understanding of end of life care needs for this patient group and their carers, and to use this information to devise an intervention to improve care. Qualitative data were obtained from relatives of 20 patients with advanced dementia admitted to an inner London teaching hospital acute National Health Service (NHS) Trust and 21 health care professionals involved in their care. Framework analysis was used to analyse the transcripts. The results showed that participants’ understanding of dementia and its likely progress was poor. Provision of information regarding the future was rare despite high information needs. Attitudes regarding end of life care were often driven by the participant’s illness awareness. These attitudes served to guide the decision making process and appear to be a major barrier to the provision of more appropriate care. Implications for patient care are discussed and suggestions for future interventions are made.

Future of Health: Findings from a survey of stakeholders on the future of health and healthcare in England

“…Academy of Medical Sciences 2016) and dementia (Thuné-Boyle et al 2010). Our findings also support predictions related to the transformative capacity of new technologies and science, tempered by complex social and institutional factors (Thimbleby, 2013;Durrani, 2016) and the projected impact of environmental factors such as climate change on the health of the population (Oven et al 2012).…”

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

“…However, alongside increased community provision for end-of-life care for the frail elderly, equally crucial is the need to develop training and service provision to improve end-of-life care in hospitals and care homes -the settings where the majority of very old people die. 1,59,75,76 …”

“…40,[54][55][56][57][58] Meeting these needs in different care settings is an increasingly high priority, and lack of understanding of the course of dementia is a barrier to improving care. 59 There is growing evidence of inequitable care and poor outcomes associated with hospitalisation of older people with dementia, [60][61][62] prompting calls to improve their access to palliative care. [63][64][65][66] We found long-term-care settings provide end-of-life care for a high proportion of the oldest old with some of the highest needs in their final 'home'.…”

“…283 (100) 15 (22) 18 (20) All 76 (66), [57][58][59][60][61][62][63][64][65][66][67][68][69][70][71][72][73][74][75] 35 (55), 44 (42), [33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52] 155 (55) …”

The Challenges of Providing Palliative Care for Older People with Dementia

“…They would also benefit from more information. A study in the UK showed that people with dementia and their carers do not understand the condition or its likely progression and, furthermore, this lack of information seems to influence decision-making, which can often lead to inappropriate care [22].…”