'I shouldn't have had to push and fight': health care experiences of persons with dementia and their caregivers in primary care.

OBJECTIVES: Most persons with dementia (PWD) receive the majority of their care from primary care providers (PCPs). A number of challenges have been identified with providing quality dementia care in primary care from the perspective of PCP. However, less is known of the primary care health care experience (HCE) of PWD and their caregivers. We examined the primary care HCE of PWD and their caregivers in Ontario, Canada. METHODS: Participants were recruited through local Alzheimer Society chapter support groups. A semi-structured interview guide was developed. Focus groups were audio recorded, transcribed verbatim, anonymized, and then reviewed and coded for themes independently by two study authors. Thematic analysis was conducted to identify major themes and a model proposing the common components of a perceived positive HCE was created. RESULTS: Five focus groups were conducted across urban and rural settings. Each focus group included both PWD and their caregivers and a total of eight PWD and 21 caregivers participated. Four main themes emerged from the analysis: communication, caregiver as manager, system navigation, ease of access. The model for positive HCE included: an informed patient/caregiver; supported patient/caregiver; strong PCP-patient/caregiver relationship; an accessible provider; a knowledgeable provider; and strong communication by the provider. CONCLUSION: The HCE of PWD and their caregivers is complex and a number of factors which are potentially modifiable by PCP may improve the HCE for the growing number of PWD in primary care. Understanding these experiences may help to identify strategies to improve care and patient and provider experiences.