Best practice recommendations for end-stage dementia care

Immersion Project: Best Practice Recommendations for End-Stage Dementia Care

My immersion project created opportunities to interact with other care professionals, including primary care physicians, nurse practitioners, geriatric specialists, hospice nurses, and hospice administrators. Through these interactions I came to realize that there was a great need for best practice recommendations for end-stage dementia care, among primary care providers and the clinicians staffing long-term care facilities. Writing the literature review helped me realize that best practice recommendations do exist, but are not readily accessible to clinicians who need reliable and accurate tools for estimating life expectancies of terminally ill patients. The best tool available for patients suffering primarily from dementia, based on my research in this field, was the one developed by Mitchell and colleagues (2010a). Despite using the best evidence available for developing this tool, accuracy was modest at best and the authors of this study concluded that the provision of care for dementia patients should be guided by care goals, rather than life expectancy (Mitchell et al., 2010b). In spite of the limited utility of this prognosis tool for this patient population, several providers who participated in the immersion project readily expressed gratitude for being made aware of the existence of this tool. Clinicians staffing nursing homes expressed the greatest interest, a sentiment not mirrored by most primary care providers.

The lack of provider consensus concerning best practices for dementia care was the dominant theme that emerged during the immersion project, which may explain why several participating clinicians implemented a best practice recommendation tool developed during the immersion project. While there was some criticism over the way the information was formatted and presented, overall the tool was well-received. This reaction helped me realize that experts in dementia care have reached consensus about best practice recommendations, but clinicians caring for dementia patients in primary care offices and nursing homes have been basing their clinical decisions on experience, habit, and intuition.