Palliative care needs and outcomes for dementia patients

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The number of people living with dementia worldwide, estimated at 35.6 million in 2010, is set to nearly double every 20 years, reaching 65.7 million in 2030, and 115.4 million in 2050. The World Health Organization has declared dementia a public health crisis and issued a call for global nations to make dementia an international public health priority. Dementia is a terminal disease and was the sixth leading cause of death in the US in 2014. Little is known about the everyday lived experiences and suffering endured over time by patients in the early stages of dementia as most research focuses on patient experiences in the later stages of dementia and often on those who are already institutionalized. However, patients early in the dementia trajectory are beset with distressing symptoms. Three out of four Persons With Dementia (PWD) live in the community (e.g., private residences or non-nursing home residential care facilities). Proactive, patient-centered palliative interventions will better prepare patients and families for the challenges of living with dementia in the community. Implementing early palliative care will facilitate ongoing assessment and management of the distressing symptoms experienced by PWD from very early in the illness trajectory and result in better symptom management, quality of life and timely advance care planning. The Stanford Alzheimer's Disease Research Center (ADRC) was founded in 2015 and we have enrolled a large (and growing) panel of participants whom we follow longitudinally until death. Recognizing that the primary components of palliative care include symptom assessment and management, advance care planning completion and provision of support with end-of-life decision-making, we have designed, refined, and piloted an intervention to be used in the proposed Randomized Clinical Trial (RCT). We will recruit 200 Stanford ADRC participants and randomize 100 each to usual care (UC) or usual care plus an early palliative care intervention (EPC) to be delivered by a nurse over a twelve-month period. The EPC will include one nurse-led palliative consult in a two-hour house call and followed by 11 monthly 30-minute phone assessment plus usual care. The specific aims of the RCT are (i) To determine whether EPC will lead to lower symptom burden, higher quality of life, lesser resource use (e.g. hospital admissions and days, emergency visits) & greater patient activation; (ii) To use all the baseline standardized evaluation measures established by the National Alzheimer's Coordinating Center (NACC) that are routinely collected on our ADRC participants to identify moderators and mediators of treatment outcome and (iii) To use mixed-methods to analyze the audiotapes of the encounters between the research nurse and the patient during the twelve intervention sessions and to assess whether the information that is provided to participants differs by patient ethnicity and cognitive levels. This RCT provides a very rare opportunity to monitor the palliative needs over time of community-dwelling ADRC participants and has great potential to inform future studies by our sister ADRCs on the palliative needs of persons with dementia.