Dementia Literacy

“Health literacy means being able to access, understand, appraise and use information and services in ways that promote and maintain good health and well-being.” WHO 2024

The term “health literacy” has a long history. It was first used by Scott K. Simonds in 1974 in a monograph entitled “Health Education as Social Policy”.

Many permutations of the concept of health literacy (HL) have emerged since then, with an easy and elegant definition from Kendir and Breton (2020) which states that “Health literacy (HL) is increasingly hailed as a strategy to improve the control individuals have over their health.”

The application of this generic concept to dementia, in the form of dementia literacy (DL), has also undergone various revisions with no consensus on the agreed definition. (Lo 2020). However, a comprehensive definition has been suggested by Fernandez Cajavilca and Sadarangani 2024:

“Dementia literacy is defined as the ability to acquire dementia-related knowledge to inform decision-making, self-identify gaps in caregiving support, and secure access to necessary resources to enable long-term care, all while maintaining relationships with an interdisciplinary team of specialized providers.” (Fernandez Cajavilca and Sadarangani 2024).

As can be seen, this definition is strongly patient-centred. It, therefore, encourages active engagement by persons living with dementia in their own healthcare, disease prevention, health promotion and activities of daily living. (Sørensen et al., 2012).

Does DL improve the lives of people living with dementia?

In brief, the answer is yes. According to  Nguyen, Phan et al. 2022: “There is evidence for the positive impact of dementia literacy interventions on different groups of non-health-professionals.”

Importantly, knowledge of dementia has been shown to be significantly associated with the psychological wellbeing of caregivers.  As has been noted by Fernandez Cajavilca and Sadarangani 2024, DL for caregivers “can potentially buffer many of the adverse consequences of caregiving such as emotional distress and chronic illness.” (Fernandez Cajavilca and Sadarangani 2024).

Thie impact on caregivers must not be diminished in importance. In 2020, it was estimated that 57 million people were currently living with dementia and by 2050, it is predicted that this number will increase by nearly 300%, most rapidly in low- and middle-income countries.  Unfortunately, the impact on caregivers is substantial with 75% reporting that they had one or more physical or emotional effects due to the caring role.

Aside from the benefits to caregivers, continuously improving DL is also vital for all members of the clinical health care team.

Community pharmacist:

Because of their training and ready availability, community pharmacists are an ideal point of contact for cognitive impairment screening. The pursuit of ongoing education in dementia-related factors and issues would improve this screening and referral capacity. (Ramos, Moreno et al. 2021)

Doctors:

Turner, Iliffe et al. (2004) have suggested that “Educational support for general practitioners should concentrate on epidemiological knowledge, disclosure of the diagnosis and management of behaviour problems in dementia. The availability and profile of support services, particularly social care, need to be enhanced, if earlier diagnosis is to be pursued as a policy objective in primary care.”

Aged care staff:

Aged care staff are in the front line of those who care for people living with dementia as 52% of people living in Australian Residential Aged Care Facilities (RACFs) have dementia.

Pleasingly, the DL of RACF staff is significant, with approximately 77% (n = 137) aware of dementia-specific education, and 66% (n = 115) completing education in the previous 2 years. However, on a negative note “only 27% of staff had accessed dementia‐specific services, and only two thirds (66%) had accessed dementia‐specific education in the previous 2 years.” (Williams, Ockerby et al. 2021)

An excellent starting point for all who are involved in the care of people living with dementia is the “Understanding Dementia” Massive Open Online Course (MOOC), which has been developed by Wicking Dementia Research and Education Centre at the University of Tasmania. It is a free nine-week online course that builds upon the latest in international research on dementia.

The curriculum draws upon the expertise of neuroscientists, clinicians and dementia care professionals at the Wicking Centre.  I completed this course in September 2024 and strongly endorse it.