Caring for individuals with end-stage dementia at the end of life

Abstract

Little is known about the beliefs and practices of social workers who work with individuals with end-stage dementia. With more individuals reaching the end stages of the disease, it is crucial to determine how professionals view their work with end-stage dementia patients and their caregivers. During this ethnographic study, the beliefs and practices about dementia care of 13 hospice social workers from the United States were documented for 10 months through interviews, in-field observations, and chart reviews. It was determined that although hospice social workers use a wealth of practice skills with individuals with end-stage dementia and their caregivers and strive to enhance the personhood of the patients, they also possess a neutral to negative view of practice with this population and see their role as limited and ambiguous compared to how they view their work with cognitively intact patients. This study has implications for how hospice social workers and other healthcare professionals provide end-of-life care for patients and families who are dealing with dementia and the types of training that should be implemented in hospice agencies to strengthen end-stage dementia care.

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

“…For instance, Shega et al’s review notes there are limited opportunities for people with dementia to use the services of hospices. They speculate that this may be because of a lack of awareness that dementia is a terminal illness and worries about not being able to manage behavioral symptoms [59,60]. Palliative care is often medicalised in hospital [61] possibly due to lack of advance decisions or directives meaning that inappropriate admissions or interventions may occur.…”

The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review

“…Far less research has been conducted on the experiences of family caregivers providing end-of-life care, which is perplexing given dementia is a terminal illness (Mitchell et al, 2009; Gill et al, 2010). Much more needs to be done to add clarity and provide understanding within the end- of-life context, particularly for those who care for a relative or loved one with dementia (Allen et al, 2003; Sanders & Swails, 2009).…”

“Death Is Part of the Job” in Long-Term Care Homes

“…Palliative/end-of-life care literature identifies that specialized training, skills, and education requirements are needed for the delivery of palliative care (Froggatt, 2001;Hall, Kolliakou, Petkova, Froggatt, & Higginson, 2011;Kagan & Stricker, 2010;Sanders & Swails, 2009;Stolley, 2010). Support for grief, loss, and bereavement is acknowledged to be an important component of holistic palliative care as per Canadian Hospice Palliative Care Association's (2013) Model of Care.…”