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

ABSTRACT

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.

KEYWORDS:

• Alzheimer's disease
• dementia
• qualitative research
• patient experience

Acknowledgments

Dr D.P. Seitz has received honoraria from Eli-Lilly, Canada for participating on an advisory board. J.C. Prorok has received an honorarium from the Alzheimer Society of Canada for evaluation of an Alzheimer Society event. J.C. Prorok and M. Hussain contributed to the analysis and interpretation of data, as well as drafting the manuscript. S. Horgan contributed to the acquisition of data and revising the manuscript critically for important intellectual content. D.P. Seitz contributed to the conception and design of the study, acquisition of data and revising the manuscript critically for important intellectual content. All authors gave final approval of the version to be published. The authors of the manuscript have no financial conflicts of interest to disclose.

Supplemental data for this article can be accessed at: http://dx.doi.org/10.1080/13607863.2016.1159280

Disclosure statement

The authors of the manuscript have no financial conflicts of interest to disclose.

Additional information

Funding

This work was supported by the Canadian Institutes of Health Research under Knowledge-to-Action [grant number 114493].