Reframing the language of dementia

A structured approach to language shows promise for improving the lives of dementia patients and their families

Published online 6 March 2015

Words for a Journey provides a structured way for families and caregivers to communicate with loved ones living with dementia.

Words for a Journey provides a structured way for families and caregivers to communicate with loved ones living with dementia.

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A diagnosis of dementia is likely to instill something akin to terror. But consider what could happen if we stopped using the language of loss when talking about the condition. This is the approach advocated by Takashi Iba from the Faculty of Policy Management and the Graduate School of Media and Governance at Keio University. In a booklet specifically designed to provide a structured way to communicate about dementia, Iba describes the onset of dementia as the beginning of a journey.

An aging society

With the global rise in average life expectancy, it is more likely than ever that we or someone close to us will be affected by dementia. In Japan -- the world's first super-aged nation with more than 25 per cent of its present population above the age of 65 -- the number of people with dementia is projected to reach 7 million by 2025.

Iba's research involves developing 'pattern languages', for which practical knowledge is mined from a variety of data sources and then organized into a pattern format. Pattern languages are used in a range of fields, including architecture, software design and creative activities. Iba was giving a seminar on the creation of pattern languages in early 2014, when Makoto Okada of Fujitsu Laboratories approached him and asked whether he was interested in collaborating with him to create a new type of pattern language that would help people living with dementia. "I was immediately struck by the importance of developing such a support system, especially in Japan, and also, of course, around the world," says Iba.

The work was fast-tracked. Iba initiated the project with his students and several external collaborators in June 2014. They interviewed dementia patients and their caregivers and then organized the mined information into a pattern language. But they did not stop there. For the work to make an impact, they realized they needed to find a way of sharing the new language with patients, families, caregivers, doctors, and people for whom dementia is not a current concern. To realize that goal, they published the booklet Words for a Journey in Japanese and English in October 2014, a mere five months after commencing the project1.

Words of care

The researchers constructed a pattern language for three separate groups: people with dementia; families and friends; and society as a whole. Accordingly, Words for a Journey is divided into three sections: "Words for the cared", "Words for the caring", and "Words for everyone". Each section is divided into a context, problem, solution, and name. For example, "Words for the cared" describes how dementia patients tend to spend less time outside the home -- the context. One problem that can arise from this is that patients may become depressed staying indoors or feel lost if they venture out by themselves. A solution would be to find a place that the cared can travel to by themselves and which their family knows; this place is called their 'favorite place' (name). To make living with dementia more manageable, Iba and his collaborators suggest reframing dementia as a 'new journey' and viewing it as an opportunity to learn more about one's loved ones.

To date, 500 copies of the booklet have been distributed. "It is touching to see the booklet welcomed by people who are affected by dementia," Iba notes. "We hope that these patterns will help to solve their problems and improve their daily lives."

As a firm believer in the capacity of pattern languages to improve lives, Iba hopes that the approach will encourage a social movement in which individuals share their experiences and mine information to establish a practical knowledge base for living well with dementia. His group plans to build on their work through community-centered dialogue workshops to demonstrate that "everyone can use patterns as a source of imagination and innovation."

Reference

  1. "Words for a Journey - the Art of Being with Dementia" | article

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This article was made for Keio University by Nature Research Custom Media, part of Springer Nature.