Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives

Palliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, Alissa Bernstein Sideman, PhD, MPH, MA, Krista Harrison, PhD, Sarah Garrett, PhD, and colleagues share the findings of their recent study that characterizes memory care providers’ perspectives on addressing palliative care needs of people living with dementia (PLWD).

The researchers identified memory care providers’ perspectives on addressing palliative care needs of PLWD and their families that overlap with key domains of palliative care, approaches these providers take that are specific to working with PLWD, challenges providers face addressing palliative care needs in this population, and training and content support needed to more successfully realize a palliative care approach.

Many participants endorsed practices that align with recommendations for neuropalliative care. They also described components of “basic palliative care,” where clinicians without specialty training in palliative care provide symptom management and discussion of goals, values, and preferences using skills from palliative care within their existing scope of practice. Furthermore, memory care providers named many challenges to engaging in in-depth or consistent palliative care. 
Some participants worried about how the language of palliative care would be received by patients and caregivers. Many providers in the study endorsed interest in receiving more training in communication and when to initiate palliative care discussions.

The researchers found there are many ongoing systems-level adjustments needed in regards to billing for this type of work. For example, the Center for Medicare and Medicaid Services has approved chronic care management and care planning codes, as well as codes to bill for extended time spent with patients, phone calls, and time spent conducting non–face-to-face activities, all of which could enable memory care providers to have more time to address palliative care needs with PLWD. More work is needed to integrate these approaches into existing clinic structures, and train providers on mechanisms for implementation.
In order to build a palliative care intervention for PLWD, the researchers found this approach will need to incorporate both traditional palliative care content and content unique to dementia care into training and care provision. Participants felt that working with PLWD requires a nuanced understanding of neurodegenerative diseases and how they manifest in regard to the brain, function, cognition, and medications management. Participants underscored the particular challenge of behavioral symptoms in dementia. Ideally, a palliative care approach could be initiated upon diagnosis of a dementia syndrome, include advanced care planning, and take into account the unique needs of PLWD.

Participants reported strengths related to the interdisciplinary team-based approach their memory center uses. Members of the interdisciplinary team with different expertise take responsibility for different aspects of a patient's care. This team enables families to connect to dementia-specific resources and support. An awareness of the scope of practice of different team members is important in dementia palliative care. Providers also may provide neuro-education to a patient's other providers.
Many providers reported engaging in anticipatory guidance, in which providers foreshadow potential challenges and make recommendations for care approaches that incorporate the preferences of patients and families. These practices are in accordance with traditional palliative care frameworks. In their interviews, researchers found that providers most frequently discussed providing anticipatory guidance around patient safety, such as dementia-specific home safety, driving, financial safety, and identifying referrals to physical or occupational therapy. Furthermore, providers offered guidance around helping to maintain patient quality of life over the disease course.

Participants in their study suggested the need for funding for additional dedicated palliative care personnel, training in key aspects of communication, new protocols, and systems-level changes. This aligns with international research on dementia palliative care. 

Alissa Bernstein Sideman, PhD, MPH, MA

Alissa Bernstein, PhD, MPH, MA is a medical anthropologist and health policy researcher focused on understanding and improving the assessment, diagnosis, and care of people with Alzheimer’s disease and related dementias, with a specific focus on primary care in safety net settings. She also conducts research focused on care navigation to support people with dementia and their caregivers and building palliative care approaches in memory care settings. Dr. Bernstein is an Assistant Professor in the Department of Humanities and Social Sciences within the UCSF School of Medicine, and is core faculty in the Philip R. Lee Institute for Health Policy Studies, as well as faculty in the Global Brain Health Institute at UCSF.


Krista Harrison, PhD

Krista Harrison, PhD, is a health policy, ethics, and health services researcher focused on improving systems of care for older adults with dementia and other serious illnesses who live in home- and community-based settings.Dr. Harrison is an Assistant Professor in the Division of Geriatrics within the UCSF School of Medicine, affiliated with the Philip R. Lee Institute for Health Policy Studies, and a Senior Atlantic Fellow of the Global Brain Health Institute. She is also Associate Director of the T32 Aging Research Program and Associate Director of Analytic Research Operations in Geriatrics. Dr. Harrison’s research aims to transform clinical practice, health systems, and health policy for older adults with serious illness. Her work focuses on older adults living at home with advancing dementia and the quality of home-based medical care. Her expertise includes qualitative and quantitative research methods, health policy ethics, implementation science, and the translation of research to policy.


Sarah B Garrett, PhD

Sarah B. Garrett, PhD, is a medical and cultural sociologist. As of May 2020 she is a Health Policy Fellow at the Phillip R. Lee Institute for Health Policy Studies (IHPS) at UCSF. She received a PhD in Sociology from the University of California, Berkeley. Dr. Garrett helped to design, conduct and analyze mixed-methods research on the experiences and needs of individuals with dementia and their caregivers; on older adults' experience managing chronic pain during the "opioid epidemic"; and on how hospice staff navigate patients' and families' preferences for aggressive care. Dr. Garrett also works to improve methods of analyzing, presenting, and sharing qualitative data in order to make these data more useful in patient-centered outcomes research (PCOR).  


Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives. Bernstein Sideman A, Harrison KL, Garrett SB, Naasan G; Dementia Palliative Care Writing Group, Ritchie CS.  Alzheimers Dement (N Y). 2021 May 1;7(1):e12144. doi: 10.1002/trc2.12144.