The needs of family caregivers of persons living with dementia cared for in primary care practices
August 18, 2023
A new publication by IMPACT Pilot Grant Awardee Brent Forester, MD, MSc and co-authors, explores the challenges faced by informal caregivers providing unpaid support for individuals with dementia. The study investigates caregivers’ perceived abilities to handle dementia symptoms and the support they receive from healthcare providers. Conducted within the Mass General Brigham health system, the research reveals that caregivers often feel unsupported by providers in managing challenging symptoms, accessing community services, and understanding disease progression. The findings underscore the need to enhance training for healthcare providers in dementia care to better support informal caregivers within a primary care context.
Abstract
Rationale
The informal caregivers who provide unpaid support for persons living with dementia (PLWD) are often unprepared to appropriately manage symptoms and navigate health services to support themselves or the PLWD.
Aim
To understand informal caregivers’ perceived capabilities of handling dementia symptomology and perceived support from providers.
Methods
The authors identified and surveyed caregivers of primary care patients in the Mass General Brigham health system. They included a self-efficacy questionnaire to assess caregivers’ ability and confidence in access to dementia care, symptom management, and provider support.
Results
Respondents indicated that although their provider had knowledge of dementia and memory care, they were least likely to agree (39.2%) that their provider helped them with these challenging symptoms. Those who live with the care recipient were least likely to receive advice about common symptoms (43.6%) and to access community services (63.8%), and in general felt moderately knowledgeable about the progression of the disease (47.9%).
Conclusions
The findings imply that caregivers are aware of disease progression, dementia symptoms, and do not feel supported by their providers in managing care or accessing support services. There is opportunity to support informal caregivers in a primary care setting by appropriately uptraining providers in dementia care.