From Dementia Capable to Dementia Positive

In discussions of how to address the public health challenge of dementia, three concepts emerge: dementia capable, dementia friendly, and dementia positive. Each of these concepts has a complicated definition, and each suggests different policy approaches to dementia. Dementia friendly focuses primarily on the experience of individuals with dementia. Dementia capable, on the other hand, focuses more on the workforce and providing services to individuals with dementia. Dementia positive centers around the social inclusion of individuals with dementia and a fuller appreciation of their skills and ability to lead a meaningful life.

The 2012 report Dementia: A Public Health Priority from the WHO and ADI laid out “The Six Stages of Acceptance of Dementia,” which range from ignoring the problem at one end to normalization and the acceptance of dementia as a disability at the other. A key concept associated with reaching this final stage is the concept of dementia-friendly communities. Dementia friendly is a term that appears in a number of countries’ national dementia plans, such as Finland, France, and Israel. In some national dementia plans, this term applies primarily to the immediate physical environments inhabited by individuals with dementia. For example, the Northern Ireland national plan mentions “making the physical environment of the hospital more dementia friendly” and requires audits to make care homes more dementia friendly. In other cases, the term dementia friendly is applied to communities more broadly. This involves creating communities that are working to help residents “live well with dementia” and contributing “to greater awareness of dementia and reduce stigma. However, in both cases, the use of the term dementia friendly centers around concerns about the experience of the individual with dementia. Overall, the main concern is with addressing modifications of the living environment.

Dementia capable is a term that only appears in the dementia plan of the United States, where it has “developed into one of the greatest forces of the US national plan, guiding the creation of nationwide dementia-capable workforces, services, and programs.” Dementia capable is used in two ways in the US national plan and related documents. One usage is similar to dementia friendly, which centers on things that persons with dementia are able to do or enjoy. The other usage focuses more on an ability to fulfill the needs of persons with dementia and their caregivers. This would include a combination of staff knowledge and skills, as well as programs and services. In order to increase dementia capability, efforts concentrate on the development of the workforce and dementia services, and meeting special needs. In contrast to the focus on the environment in the concept of dementia-friendly, the usage of the term dementia capable centers around the language and philosophy of care. This creates a two-step approach. First is inclusion into the disability community, and second is inclusion in the community at large as a member of the disability community. However, with the focus on needs being met in a dementia capable framework (a “service-need” relationship), there is the danger that the living experience of the individual with dementia is being overlooked.

While the concept dementia positive has not yet been used in such plans, it presents an alternative vision of dementia policy that experts also consider worthy of consideration. Dementia positive has been suggested as a new concept that promotes “real social inclusion of persons with dementia and their families.” It is defined as “a positivity toward dementia with an intentional focus on strength finding, manifesting through attitudes, beliefs, communication, and behaviors.” The positive beliefs advocated through this concept place a focus on the ability of individuals with dementia to “actually live a meaningful life.” Being dementia positive means viewing individuals with dementia as equal contributors. For caregivers and service providers, dementia positivity would involve fostering the belief that persons with dementia are able to live a more normal, meaningful life with their help, and working with persons with dementia and their families to identify strengths and abilities. Without an appreciation of the skills and abilities of individuals with dementia, advocates of the concept of dementia positivity suggest that the provision of resources and opportunities is “merely a pseudo social inclusion.”

By looking at the concepts used and suggested for national dementia plans, it becomes obvious that the concepts adopted in such plans can lead to differences in how national public health efforts address the challenge of dementia care. By comparing these concepts, we can also see how the experiences of persons with dementia can be shaped by the differing emphases of each of these concepts. It has also been suggested that the three concepts here are complementary, so that the ideal policy and service provider approach to dementia would be one that is dementia capable, dementia friendly, and dementia positive.

Source:

Lin S-Y and Lewis FM. Dementia friendly, dementia capable, and dementia positive: concepts to prepare for the future. The Gerontologist (2015); 55(2): 237–244.

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