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

Abstract

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.

Humanizing Information About Meaningful Activities for People with Dementia

“…The same author advocates the importance of supporting the relevant remaining cognitive capacities and strengths in order to maintain independence and meaning in life, through raising public awareness, education and psychosocial approaches. Kimzey and colleagues [13] call for the promotion of health literacy through health education and information suited to the needs of people with dementia and their carers, since the diagnosis. Health literacy is understood as "the combination of personal competencies and situational resources needed for people to access, understand, appraise and use information and services to make decisions about health" [14, p. 6].…”

“…The guidelines and other initiatives advocating for making information and websites more accessible, such as The UK Network of Dementia Voices, also claim the importance of involving people with dementia in producing websites and information resources [34,35,45]. In a study on promoting health literacy in people with dementia and informal carers, Kimzey and colleagues [13] also emphasize the need for their inclusion in the development of information materials, which would additionally contribute to the literature in this field. An interesting example of information co-created with people with dementia is the self-help guide My Life, My Goals [46].…”