Faculty Spotlight: Alissa Bernstein-Sideman, PhD, MA

Alissa Bernstein-Sideman, PhD, MA

What are you thinking about? 

Most of my work these days is focused on how we recognize and manage situations related to people with Alzheimer’s disease and related dementias (ADRD). Many at IHPS may know that there are no effective therapies for ADRD, and it is a challenging disease to diagnose. ADRD is a big clinical challenge, but it is also an incredible challenge for policy and society at large. I am thinking a lot about the many different health systems factors, social determinants of health, and comorbid conditions that make it challenging for a health care provider to identify whether a patient has dementia or even prioritize doing an assessment for dementia. I am PI of a California Department of Public Health (CDPH) Alzheimer’s Disease grant that focuses on understanding challenges to identifying and addressing ADRD in primary care settings. I am conducting qualitative interviews with primary care providers based in safety net and community health settings across California. While I went into the study focused on how comorbid conditions such as diabetes, hypertension, depression, cardiovascular disease, and osteoarthritis may impact the workup and care of patients with dementia, some of the issues arising in interviews include the challenges when addressing dementia in the context of substance abuse, homelessness, severe mental illness, prior trauma, or when patients are immigrants or refugees. Since I began the interviews for this project in March, I’ve been thinking a lot about how COVID has impacted my work. One surprise is that it has been easier and actually maybe even more revealing to interview providers over Zoom rather than traveling all over the Bay Area and California to do in-person interviews for the CDPH grant. On the other hand, I also have a recently-awarded K01 award from the NIA that focuses on caregivers of people with ADRD, and it is harder to make progress on that project during COVID times given the extreme burdens these caregivers are facing on top of an already challenging disease.

Why is this interesting to you? 

There is major work needed to better understand issues of health equity and justice in the realm of dementia. In ADRD, we need a better understanding of treatment disparities such as missed or delayed diagnosis, severity of impairment, or access to pharmacotherapy. We have guidelines and tools to help providers with dementia assessment, but systems-level barriers and educational needs mean these aren’t used as often as they should be and especially not among vulnerable and disadvantaged patient groups. I’m thinking a lot about how to engage primary care clinicians as collaborators to identify solutions to improve evaluation, referral, and care processes with a focus on the most at-risk patients, and to streamline the process of referring to neurologists.

What are the practical implications for healthcare and health policy? 

Primary care providers are considered the “gatekeepers” to patients with suspected dementia. These providers have many incredible strengths such as long and trusting relationships with their patients, the ability to see their patients holistically and within their community context, familiarity with a patient’s family and social network, and knowledge of the resource environment. Policymakers need to focus on some of the nuts and bolts that will help these providers fulfill their potential, e.g. create billing mechanisms and human resource approaches that can support the longer visits required to do dementia evaluation in primary care and the intensive work involved in follow-up care, particularly for the at-risk and disadvantaged patients that I am identifying in my study. One team I am working with (DetectCID, PI: Kate Possin) is implementing a dementia care navigation consult call following a dementia diagnosis made in primary care, while another team (AIDDPCP, PIs Howie Rosen, Loren Alving) is working on a tele-consult model that brings together primary care providers and dementia experts to discuss challenging cases. Both of these are exciting possibilities for better supporting primary care providers working with patients with dementia.  

How do the things you are thinking about pertain to the challenges facing the world today? 

Dementia is a major challenge in the United States as well as globally. More than 5 million Americans are currently living with dementia, and this number is expected to triple over the next thirty years. The costs are enormous as is the social and societal impact. Researchers developed a COVID vaccine in only 9 months, but despite billions invested over decades, we’ve made very little progress in developing a treatment for dementia. So, we need to learn how to live with ADRD for the foreseeable future which will require a big re-thinking of primary care and social care in the US and throughout the world.

How do you see this work building from your previous work, or from previous collaborative endeavors? 

I have been at UCSF for a long time – as a graduate student in medical anthropology, as a PRL Fellow at IHPS, and as a Fellow in neurology’s Global Brain Health Institute. My current work builds on all three of those perspectives – anthropologist, policy analyst, and brain health researcher. I’ve received incredible mentorship as a co-investigator on two ongoing projects to improve dementia assessment, diagnosis, and care in primary care settings. I use my anthropologist and health policy orientation to look upstream to understand the barriers to implementing dementia assessment tools in community and safety net settings. In my work, I also draw on methods from my previous work – interviews, participant observation, and focus group skills I learned in graduate school plus survey and chart review skills I’ve obtained as a fellow and faculty member.