Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies

Background:

Understanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.

Methods:

We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

Results:

In total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.

Interpretation:

The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.The global prevalence of Alzheimer disease and related dementias is estimated to be 36 million people and is expected to double in the next 20 years.¹ Several recent strategies for providing care to patients with dementia have highlighted the importance of coordinated health care services for this growing population.^2–5 Gaps in the quality of care for people with dementia have been identified,^6–8 and improving their quality of care and health care experience has been identified as a priority area.^2–5Incorporating the health care experience of patients and caregivers in health service planning is important to ensure that their needs are met and that person-centred care is provided.⁹ The health care experience of people with dementia and their caregivers provides valuable information about preferences for services and service delivery.¹⁰ Matching available services to patient treatment preferences leads to improved patient outcomes^11,12 and satisfaction without increasing costs.¹³ Qualitative research is ideally suited to exploring the experiences and perspectives of patients and caregivers and has been used to examine these experiences for other conditions.¹⁴ We performed a systematic review and meta-ethnographic synthesis of qualitative studies exploring the health care experience of people with dementia and their caregivers in primary care settings, and we propose a conceptual framework for understanding and improving these health care experiences.