Development of health literacy in persons and caregivers living with dementia: A qualitative directed content analysis

Background Persons living with dementia and their caregivers need health information to understand and manage daily life. Previous studies focused on the associations of health literacy and cognitive impairment with less exploring if and how individuals develop health literacy during the course of the disease. Purpose This descriptive qualitative study aimed to explore the development of health literacy competencies among persons living with dementia and their caregivers. Methods Directed content analysis of six focus groups conducted in the community setting (15 persons living with dementia and 28 caregivers) was completed, using predetermined categories from the Integrated Model of Health Literacy: access, understand, appraise, and apply health information. Findings Participants described developing health literacy competencies over time, moving from a dependence on health care providers to becoming their own experts. Although health care providers were involved in the diagnosis and medication management, most participants admitted that they provided very little information on how to manage their daily life with dementia and often failed to inform them of community resources. Conclusion Participants seemed to find dementia resources on their own for both education and support, often stumbling upon them by accident. Health care providers should promote the health literacy competencies of their patients and caregivers by more intentionally providing dementia health and community resource information.