Dementia caregivers identify challenges and facilitators to attending health care visits

Background The 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers identified the need for person‐centered dementia care throughout the care continuum. Challenges include adapting health care to meet the complex needs of persons with dementia and their caregivers across a variety of settings. Method To understand dementia caregivers’ experience of the health care system, we conducted qualitative interviews with twenty‐four middle‐to‐older age caregivers of community‐dwelling people with dementia. Data were analyzed using conventional content analysis whereby the coding team sought to identify barriers and facilitators to person‐centered dementia care. Result We identified three categories and associated sub‐categories related to caregiver experience: 1) Preparing for the Visit, with sub‐categories Physical Challenges and Emotional Preparation; 2) Visit‐Related Time and Travel, with sub‐categories General Travel Challenges, Physical Limitations, Cognitive Limitations, and Benefits; and, 3) In‐visit Experience, with sub‐categories Physical Challenges and Emotional Preparation. Preparing for visit statements revealed barriers, such as patient resistance to attending visits due to not understanding the need. Visit‐related time and travel statements reflected a balance of challenges and facilitators, including general challenges such as traffic and dementia‐specific challenges such as patient agitation around visit wait times. Facilitators reflected the benefit of visits as opportunities for social participation. In‐visit experience statements reflected a mix of challenges and facilitators. Challenges included person with dementia difficulty participating in the health care visit due to poor insight and inability to answer questions, while facilitators included caregivers’ positive engagement with the care team. Across categories, caregivers assumed high‐level responsibility to accommodate for person with dementia physical and cognitive challenges. Conclusion Categories underscore the complexity of health care management for a person with dementia both in and around actual clinic appointments, highlighting both challenges related to person with dementia cognitive deficits and perceived benefits related to visits as opportunities for social participation and accessing resources. This study offers relevant insights about tailoring health care to accommodate for person with dementia deficits while supporting their caregivers.