The needs of family caregivers of persons living with dementia cared for in primary care practices

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: We identified and surveyed caregivers of primary care patients in the Mass General Brigham health system. We 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.