End-of-Life Issues in Caring for Patients With Dementia

Abstract

The number of people suffering with dementia is increasing in the general population and the trend is projected to continue as people live longer, especially in countries with developed economies. The most common cause of dementia (among the many other causes) is Alzheimer's dementia, which is considered a terminal illness. The disease could eventually lead to death, or death could occur as a consequence of co-morbid physical complications. The problem of end of life (EOL) care for patients suffering from dementia though spoken of and written about, does not get the attention and system support as for example patients suffering from cancer receive. Many reasons have been advanced for the current state of affairs where EOL issues for patients suffering from dementia are concerned. This article attempts to revisit the issues, and the reasons, that may contribute to this. Some guidelines on palliative management in cases of patients suffering from severe dementia exist; the evidence base for these guidelines though is relatively weak. The ethical and legal issues that may influence or impact on the decision to initiate the palliative care pathway in the management of EOL issues for dementia patients in the terminal or end stage of the illness is highlighted. Initiatives by the department of health in England and Wales, and other bodies with interest in dementia issues and palliative care in the United Kingdom to ensure good and acceptable EOL pathways for patients with dementia are mentioned.

Designing Dementia Care Pathways to Transform Non Dementia-Friendly Hospitals: Scoping Review

“…Another identified element in literature that can contribute to the earlier discharge from hospital facilities of PwD was staff organization. Successful activities organized by those interdisciplinary teams were: establishing a diagnosis, regular meetings led by physicians & nurses with the caregiver & patient to explain future and daily tasks, cares and other activities during hospital stay [33][34][35]. In those examples, nurses are involved in education and symptom management or behavior problems more than physicians, which results in an important role when talking about building confident relationships [36].…”

Defining end of life in dementia: A systematic review

“…Dementia currently affects over 50 million people globally, and this is estimated to increase to 152 million by 2050. 1,2 Although dementia mainly affects people over the age of 60, this condition is not a normal part of ageing. 3 Therefore, dementia is considered a global public health priority.…”

Family caregivers for older persons with dementia offer recommendations to current caregivers: a qualitative investigation

“…Providing informal care to someone living with dementia is challenging to caregivers because of the many unpredictable death trajectories of the disease (Hebert et al, 2006; Stajduhar et al, 2010). In addition, caregiving can be physically, psychologically, and financially difficult for the person (Coleman, 2012; Lindauer et al, 2016; Moon, 2016) and decrease quality of life (Perkins et al, 2012). Of interest here is that there continues to be limited research on these caregivers’ insights and what they have learned from their experiences taking care of a family member dying from dementia (Swartz and Collins, 2019).…”