Uncertainty and health literacy in dementia care

Abstract

The number of dementia cases increases with age, and the prevalence of dementia at the age above 80 is approaching 20% in Taiwan. Dementia is not simply a neurological disorder, but also a long-term care issue in public health and a matter of social adaptation. Scientific discoveries about dementia diagnostics, therapeutics, and preventive strategy have become the focus of media attention, but always updated and overwhelmed, which appears to increase rather than decrease the uncertainty and complexity of health communication in dementia care. Health literacy is essential for patients to understand medical information, utilize medical resources, and make shared decisions; however, the capacity to handle health information is often compromised in older adults with cognitive decline. Both ends of the increased uncertainty in dementia science and the reduced capacity in older adults are major challenges in dementia care. Dementia literacy, defined as knowledge and beliefs regarding dementia that aid recognition, management, or prevention, plays a vital role in effective care risk assessment and communication. However, little is known about the current state of dementia literacy among older adults, people with dementia, and their caregivers, and how well the dementia care practice can be implemented at the individual level is questionable. Empowering caregivers with adequate dementia literacy and developing a risk communication model in practice will translate the power of knowledge to effective care strategies, thus ameliorating the caregiver burden and enhancing the life quality of people with dementia in the long run.

Keywords: Dementia; Health literacy; Risk communication; Uncertainty.