Barriers to excellent end-of-life care for patients with dementia

Abstract

While great strides have been made recently in improving endof-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.KEY WORDS: palliative care; end-of-life care; dementia; Alzheimer's disease; hospice.

Nurses' Experiences of End of Life Care of Older Adults with Dementia

“…더욱이 치매는 질병의 진행과정과 말기 상태에 대한 정확한 진단이 어려워 죽음이 임박한 시기를 인지하기 어 렵고 질병의 특성상 적절한 말기 돌봄을 제공하는데 한계가 있 다고 보고되는바 [7,8] …”

The mental health and mortality impact of death of a partner with dementia

“…These findings suggest that any increases in providing support would have the greatest benefit to caregivers immediately prior to the bereavement. However, the difficulty of identifying a terminal phase of the disease process for dementia as compared to say cancer, means many people with dementia may experience poorer access to end of life care which may limit opportunities to support partners both before and after bereavement (Sachs et al, 2004).…”

Tensiones en torno a la inclusión de personas con el diagnóstico de demencia en investigación científica

“…La competencia de personas con demencia para consentir su participación en investigación constituye un tema de alto interés ético (11). El deterioro cognitivo, síntoma o signo característico de la demencia, puede asociarse de manera parcial o total con la capacidad de toma de decisiones y, por ende, con la capacidad de consentir la participación en una investigación (12).…”