More than 7 million people live with Alzheimer’s disease and related dementias (ADRD) in the United States, a number that is rapidly growing. Primary care providers (PCPs) are the first and, in some cases, only point of contact for most patients with suspected and confirmed ADRD, yet numerous studies have found persistent barriers to provision of high-quality primary care for this population. Known barriers include lack of familiarity with evaluation tools and their interpretation, insufficient time with patients, difficulty accessing specialists, low reimbursement, difficulty connecting with service agencies, and lack of confidence managing patient and family preferences.
Despite these barriers, we found that PCPs (MDs, NPs, and PAs) generally consider the care of patients with dementia to be consistent with the core values of primary care, which include improving population health, emphasizing prevention and health promotion, building relationships with patients over time, accounting for patients’ family and community contexts, and coordinating care. However, they also identify a disconnect between these values and their on-the-ground work capabilities due to both practice-level and systems-level constraints.
There are no universally agreed upon outcome measures for the health care of people with ADRD. The proposed study will use qualitative methods to learn about what PCPs consider important as core outcomes in clinical practice caring for people with dementia, and their perspectives on their role in ensuring these outcomes.
This project aims to answer these questions:
- What are the core outcomes that primary care organizations and PCPs consider the most important for the clinical care of people with dementia in the short- and long-term and why?
- In what areas do PCPs think they should be accountable for the care of people with dementia, and in what areas do they want to be accountable?
- What strategies might be implemented by PCPs and their practice organizations to better align their values with practices and outcomes of dementia care?
For more information, contact Alissa Bernstein Sideman.