Innovation in Dementia Care - Building Inclusive Communities




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Dec 02, 2017
by Salzburg Global Seminar
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Innovation in Dementia Care - Building Inclusive Communities

Participants begin third day of session with talks on action toward dementia-friendly work The first panel discussion on Thursday saw participants explore successful models to understand community strengths and weaknesses (Picture: Amalia Fonk-Utomo)

The third day of Changing Minds: Innovations in Dementia Care and Dementia Friendly Communities started with two different panels on dementia-friendly work.

The sentiment echoed throughout the morning was that becoming a dementia-friendly community is an ongoing process. Participants debated what it meant to be dementia-friendly, and whether being dementia-friendly always means being dementia inclusive and dementia capable as well.

The first panel enabled participants to develop a greater understanding of the work that takes place in dementia-friendly communities and what happens behind-the-scenes.

The conversation began with Jason Foo explaining the ongoing work in Singapore, which has included training Dementia Friends and dementia-friendly organizations. More dementia day care centers have also been set up.

Foo, the chief executive officer of the Alzheimer’s Disease Association in Singapore, said he and his colleagues recently explored the question: is having a dementia-friendly community the same as being dementia inclusive? As an add-on to that matter, what does dementia inclusive entail?

For something to be dementia inclusive, it must be empowering and provide freedom of choice for the person with dementia, Foo said. This way of thinking was reaffirmed when Foo and his colleagues had a conversation with someone with younger onset dementia. She told Foo and others she had the right to claim back her pre-diagnosis life.

For example, while building more dementia day care centers is a positive step, people with dementia who attend them shouldn’t be made to feel they are being locked up. Foo said he and others considered how places and activities could be made more dementia inclusive, which is one step further from being dementia-friendly so that people with dementia can have a real quality of life and dignity.

DY Suharya, founder of Alzheimer Indonesia (ALZI), and the regional director of Alzheimer’s Disease International Asia Pacific Region suggested a dementia-friendly community is defined as a place or culture where people with dementia and caregivers are empowered, supported, and included. This means understanding their rights and recognizing their potential.

When she established Alzheimer Indonesia, she paid particular attention to its branding and the messages it communicated. The tagline, “Do not underestimate memory loss,” was created following two months of discussion. Suharya said every country and city could have their own methods for raising awareness, but the bottom line is activating people’s potential to support people with dementia.

Fellows from Indonesia shared an example of the campaign held by ALZI, where people wearing purple campaign shirts take photos of themselves at famous landmarks. This encouraged more and more people to get involved, causing a snowball effect.

When identifying a dementia-friendly community, it is important to establish who the primary service provider is and its level of capability. That was the view of Kate Gordon, a health policy analyst and grassroots advocacy strategist. Just because a program may have served people with dementia for a long time, it doesn’t mean it is the most capable.

Organizations that provide services for people who potentially live with dementia should strive for training periodically to make sure staff know best practices when it comes to recognizing the condition, have effective communication skills and be able to refer people with dementia and their caregivers to specialized services.

Participants were introduced to a free tool which can assess organizations and how capable they are. In some cases, organizations may feel attacked when having to review their performance, but this is an efficient way of helping communities move forward. It is also a useful tool for decision-makers to see what progress has been made.

Reducing stigma was once again brought forward as a method to make communities more dementia-friendly. In countries like Nigeria, where a word for dementia doesn’t exist, providing more information on the condition through the work of the ambassadors has proved to be a valuable way to help the local communities. One participant noted that southern states in the United States often had similar challenges to countries like Nigeria, regarding lack of knowledge and their attitudes toward dementia. Promoting understanding of the condition would help ensure high-quality care.

The possibility of creating a global symbol for dementia-friendly initiatives was discussed. While the benefit of unified symbols was seen, a participant said the focus should be on breaking down the unique problems of each sector and the challenges posed by different public institutions.

Another participant remarked that labels are not important. Ensuring that the community steps in to help is the key, and people don’t shy away when they see a confused person.

Building a movement around dementia care, and activating existing communities is a positive way of moving forward. A participant from the UK noted volunteers want to become increasingly involved in the dementia cause.

Collaboration, identifying the champions and reaching out to them was seen as the key to building a successful campaign. Several participants said there was a need to keep the individual with dementia in mind – whether it was to plan movements, evaluate services or build inclusive communities.

Global networking, sharing successful case studies across the world, and pooling together the knowledge of caregivers were other valuable means.

The session, Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities, is part of Salzburg Global Seminar multi-year series Health and Health Care Innovation in the 21st Century. This year’s session is held in partnership with The Dartmouth Institute for Health Policy & Clinical Practice and The Mayo Clinic, with support from the Robert Bosch Stiftung, the Tsao Foundation, and the University of Texas.