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To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
13 geographically dispersed Alzheimer’s Disease Centers across the United States.
431 racially diverse caregivers of persons with dementia.
Survey on “Care Planning for Individuals with Dementia.”
The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
With the growth of neuropalliative care as a rapidly-emerging subspecialty in neurology, it is essential that clinicians develop core skills to offer high-quality, patient-centred care. This book captures the essence of palliative care in Neurology, highlighting abundant opportunities to incorporate key principles into patients' management plans. Through a pragmatic, case-based format with suggested references for readers to expand their knowledge on a range of topics, this guide explores didactic opportunities. From patients facing challenging end-of-life decisions, families struggling to determine the treatment intensities, to clinicians leading difficult conversations, these cases are straightforward and relatable. Demonstrating the breadth of palliative care opportunities occurring on the spectrum of neurologic disease, this essential toolkit supports clinicians at all levels, providing assistance for patients who have chronic, progressive, or terminal neurologic diseases. Compelling and thought-provoking, this guide highlights the many opportunities to ease suffering and to improve quality of life.
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