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Why it’s time to stop treating dementia like a death sentence

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NR Times reports on the Dementia Engagement Education and Research (DEER) programme, which aims to show people affected by dementia that it is possible to live well with the condition.

Rates of dementia are rising exponentially. By 2050, 153 million people are expected to be living with the condition worldwide. However a societal fear of the condition has produced a stigma that cannot easily be shaken off.

Dementia is among the public’s most feared conditions, second only to cancer. For many, a diagnosis signifies the end of their life. This fear, coupled with a lack of understanding of what it means to live with the condition, means patients are often pushed away and left feeling isolated.

The DEER programme is on a mission to change how society, institutions and individuals view and engage with people suffering from dementia.

Led by the University of Nevada, it offers direct education and resource navigation for individuals and their families. Additionally, it works with medical providers to help them better understand how they can provide a high-quality diagnostic experience for people living with the condition.

The university also runs educational programmes, trains care providers and connects organisations and communities to build a more robust infrastructure across Nevada.

DEER’s flagship initiative is called Dementia Friendly Nevada which operates across a network of 11 different geographic communities throughout the state.

Each locality gathers together community members and sectors to discuss how they can become more educated, supportive and inclusive of people living with dementia.

The DEER Programme’s engagement coordinator Casey Acklin describes it as a ‘community-driven, grassroots project’. NR Times sat down with Casey to hear about the University of Nevada’s unique approach and its mission to change the dementia landscape from the bottom up.

NR Times: What gaps do you aim to fill with the DEER Programme and Dementia Friendly Nevada?

Casey Acklin: Rather than building new programmes, there is a significant need for bringing awareness, shining a light and making connections to existing programmes.

There’s a lot that we’re doing already, both within our state and nationally. There are a lot of really amazing resources that people just don’t know about.

One of the main roles that we like to play at the DEER Programme is to help bridge those gaps and make those connections.

Dementia Friendly Nevada is organisationally neutral. We have no agenda in ourselves. We seek to partner with a whole landscape of nonprofit and governmental organisations to help everyone come together and share information and work together to identify and fill those gaps.

There’s a real lack of understanding about what it actually means to live with dementia. That is the case among professionals in the field, that’s the case among family and care partners and that is the case among people with dementia themselves.

The sad reality is that many people who we work with receive their diagnosis of dementia and are told ‘Go home, get your affairs in order and come back in six months’. That’s it: no resources, no information, no opportunities for action.

Much of the suffering of dementia is not the result of the dementia itself. It’s the result of how other people respond to them.

There’s a need to change the conversation and teach the story of what it means to live with dementia so that everybody understands that a diagnosis of dementia is not a death sentence.

Could you elaborate on that culture? Why are people being left in the dark and where does this problem stem from?

I think we live in a very cognitivist, youth-idolising society. We value productivity and intellectual ability as markers of what makes a human being worthwhile.

People living with dementia who are generally elders, who don’t exhibit these qualities of youth, who can’t do as much and who often operate within a network of interdependence present some cognitive dissonance for a lot of folks.

It’s a difference that’s uncomfortable so we push it away. We push it away by creating stigmas and stereotypes about what it means to live with dementia. But we also push them away physically. We create institutional memory care models that segregate and lock people living with dementia away, often against their will.

It comes down to the individual, but I would say on the whole, it’s not necessarily what is best for people living with dementia, it is what’s best for a society that doesn’t want to see them.

I truly believe that everybody is acting out of the best intentions and with heart and a desire to support people. It’s not a matter of intentionality. I think it’s a matter of […] well-intentioned people being ill-informed.

What is needed to improve the landscape?

We need to work on underlying values and basic education to help medical providers, professional care partners and family care partners. They all want to do good and they want to help people to live well, they just need to know it’s possible.

In terms of the medical system here in the United States, it does not support the sort of relationship building [and] individual, customisable care and support that people living with dementia need.

Statistics from Alzheimer’s Disease International suggest rates of dementia are set to double every 20 years, so it seems that these issues are more pertinent than ever.

It’s more prevalent than many people realise. One in nine people over the age of 65 are living with dementia and one in two people over the age of 85 are living with dementia.

It’s not a matter of if we know somebody living with dementia, it’s a matter of who we know who might be living with undiagnosed dementia.

That’s why every single community member has a part to play in this process of becoming dementia-friendly and supporting the well-being of people living with dementia.

Could you talk more about the stigma and how it impacts people with dementia and their carers?

People living with dementia and family care partners live with a lot of internalised stigma. A lot of programmes and resources for people are developed in the complete absence of involvement from people living with dementia or family care partners themselves.

Because of that internalised stigma, it’s often hard to connect with people living with dementia and support them in taking a leadership role and helping to set the strategic direction of that landscape of resources and services.

What happens in that case is twofold.

One, we end up with a real problem of representation. If we’re creating programmes for people living with dementia, we ought to be doing that in partnership with them. People have a right to be an agent in their own change.

In addition to the moral and ethical implications, there are practical implications because if we don’t involve people living with dementia in the creation of services for them, they’re not going to be impactful.

That stigma can sometimes draw a real line between patients […] and providers.

Casey Acklin, DEER programme

The DEER Programme has this year launched a free dementia self-management guidebook, available in print in Nevada and digitally worldwide. How does this new resource fit into your work?

The idea came from a group of people living with dementia and family care partners that meet weekly through Dementia Friendly Nevada at what is called Dementia Conversations.

They wanted to create a resource that felt like it was a warm handshake for people who are just receiving a diagnosis so that they aren’t [leaving] their doctor with nowhere to go and thinking that their life is over.

They have something that not only offers them strategies for success and living well but does so in a manner that supports them in remaining connected to who they are.

Something that helps them know that they are full human beings, that they’re a full member of society, that they have rights, that they have worth and that they have something to contribute.

What was the process behind creating this handbook?

We partnered with six people living with different forms of dementia and over the course of a year, worked with them as co-authors in putting together this guidebook. Every single component of the guidebook, right down to the thickness of the pages, was decided in partnership with people living with dementia.

There are many, many elements that I can point to that would have been different if we hadn’t worked in partnership. That’s the importance of bringing the people living with dementia into leadership roles.

I think the magic of the guidebook, for me, is that it’s not static. It’s not something just to be read. It’s interactive. Built into the very framework of the guidebook is a myriad of ways for the reader to interact and evolve the content into their own life.

In addition to working with a team of six people living with dementia as co-authors, we also partnered with a human-centred design expert to ensure that the guidebook was a truly accessible resource.

A lot of important work is happening in the development of better treatments for dementia, but does more attention need to be given to awareness and education? This is happening where you are in Nevada, but do you think it is happening on a national and international scale?

I’m biased, but I think we’re doing great work in terms of changing the culture of living with dementia here in Nevada. I don’t know of any other dementia-friendly community initiatives like Dementia Friendly Nevada anywhere else in the United States.

There are individual communities within states that are doing great work and becoming dementia-friendly, but in terms of a statewide effort, Nevada is unique. We have a lot of passion here.

One of my favourite parts of my job over the past few years has been connecting with other people, nationally and internationally, who share that passion for changing the story of what it means to live with dementia

We have a lot of capacity and a lot of potential. I think it’s about getting the game together, getting the conversations going, getting the financial resources. With our funding through the state, we were able to do that with the guidebook and you can see what happens when we have the resources to take action.

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