Dementia Care is a Primary Care Doctor’s Work

MCL Backstory

By Melissa Ma

"I think primary care is where the crux of dementia care begins…I think that primary care providers should be able to identify Alzheimer's disease at the very least and provide Alzheimer's care for patients, because there are just not enough specialists out there to provide this care.” -Dr. Murphy, Geriatrician

Dr. Murphy expressed this sentiment during a qualitative interview about his experiences and challenges in dementia care. During this ethnographic interview, Dr. Murphy shared his personal experience with neurologic disease. His grandfather had Parkinson’s disease and received most of his care from primary care physicians (PCPs). Dr. Murphy felt many of these PCPs did not have specific training to manage care for patients like his grandfather, and his parents struggled as caregivers to find proper resources. These experiences motivated Dr. Murphy to learn how to connect his own patients to resources and better support them as they navigate healthcare systems. Dr. Murphy believes PCP are best positioned to detect dementia and provide care, and he would like to see PCPs involved earlier and more often to provide counseling, build relationships, and manage expectations.

I had the privilege of reading and analyzing this interview and many others in my role as a clinical research coordinator in the Medical Cultures Lab. Over the course of 6 months, my colleague Alma Hernandez and I read 35 PCP interview transcripts and then coded, analyzed, and wrote thematic memos about each. The interviews were conducted by Alissa Bernstein Sideman, the PI of a study supported by a grant from California‘s Alzheimer’s Disease Research Program. Bernstein Sideman’s research aims to understand safety-net and community PCP experiences and needs with dementia care. She is also exploring  how PCP’s personal history and philosophy influence how they make decisions about dementia. The interviews asked about facilitators and barriers to diagnosing and caring for people living with dementia. Bernstein Sideman also asked personal questions about how PCP’s decided to pursue primary care, whether they knew someone who had dementia, and their beliefs about the role of primary care in dementia care. 

As someone interested in becoming a PCP, I found these sections of the interviews particularly eye opening and inspiring. In all the interviews I read, one common theme that stood out to me was a shared belief that nearly all PCPs expressed – that primary care is central to effective dementia diagnosis and care. In reflecting on PCP’s personal backgrounds and philosophies towards care, I noticed a relationship between how PCPs talked about dementia care and how they approached primary care as a specialty. Asked about why they entered primary care, many PCPs described an interest in systems of care, a concern about health equity, and a desire to form longitudinal relationships with patients. These characteristics of primary care were also the reasons they felt PCPs were well suited to detect and treat dementia, especially among underserved populations. 

Dr. Riogas and Dr. Ridgeway are family physicians who, like Dr. Murphy, strongly believe dementia care is part of primary care. Their backgrounds, experiences, and philosophies speak to the importance of trust, connection, accessibility, and social systems. 

Dr. Riogas is a Spanish-speaking family physician who was initially drawn to medicine by her Christian faith. She studied social sciences as an undergraduate and felt called to primary care to address health injustice among underserved populations. She works in a federally qualified health center in Southern California that serves a large population of low-income immigrants and refugees. She has strong personal ties to the community she currently serves — she attended the local church as a young adult and now lives in the community. She feels these connections give her a window into her patients’ lives that enriches her practice and enables her to better serve her community. When asked about the role PCP should play in dementia care, she responded:

“Well, I think that we should play a major role… Primary care, we're the hub. We're the first stop for our patients…They trust me, and that therapeutic relationship goes a long way. And so for that reason, I think that we have to be central in dementia care because we're the ones that are going to see it first, and…we're going to know or we have more opportunity to know what supports they have or lack. So, I think we have to be the main ones there.” -Dr. Riogas

Dr. Ridgeway is a male family physician who was drawn to primary care for similar reasons as Dr. Riogas. Prior to enrolling in medical school in his late 30’s Dr. Ridgeway worked in social justice activism. He decided to pursue primary care after seeing a need for more PCPs as an activist. He appreciates how family medicine focuses on how individual health is connected to family structures and broader social systems. He works in a community clinic in Northern California, and also practices street medicine in underserved communities. Dr. Ridgeway feels PCPs are uniquely suited to provide dementia care because they understand a patient’s life course, social needs, and family system:

“When it comes to dementia specifically, I think we're there from the beginning to the end… But also when it comes to someone's life, we're there from the beginning to the end. The thing that appeals to me about primary care is I have the training to deliver babies. I can be there when somebody takes their first breath as a human being. And then I have training to take care of somebody at the end of their life, too, when they take their last breath. And for every breath in between, we're here. So, I think when it comes to people's family systems and the life course that someone takes, I think that we are uniquely positioned to take care of people with dementia, to be the medical provider… Philosophically, I think who else is better suited to do that? And then at the same time, we definitely don't have the resources, the culture societally, or the systems and structures in place with reimbursement and funding to do it well.” -Dr. Ridgeway

Dr. Ridgeway elegantly captures the longitudinal insights, perspectives, and strengths PCP bring to dementia care while highlighting the systems that constrain what they can do. PCPs have been identified as central to first line dementia detection and management. At the same time, lack of training, time, confidence, knowledge, and support services hamper their ability to detect and manage dementia These constraints are amplified in safety-net clinics where limited access to specialists, language and cultural barriers, and competing social and medical concerns complicate dementia diagnosis and care.

Despite these practical challenges and structural limitations, the PCPs interviewed in this project consistently expressed an underlying belief that dementia care fell within their realm of responsibility. Listening to PCP perspectives and philosophies presents an opportunity to understand what guidance and training PCPs need to provide effective dementia care in safety-net settings. In developing policy and resources, it is worth considering how resources and tools align with PCP beliefs to help PCPs better fulfill the crucial role they play in dementia care. I look forward to advancing work on these issues in my current role at MCL, and hope to carry out PCPs’ values and vision for dementia care in my future career.