World Alzheimer’s Day, on September 21, serves as a reminder that, in the 11 years since the World Health Organization declared dementia a public health priority, LiveWell, in Connecticut is one of only a few organizations in the United States that are investing in physical and societal infrastructure to meet the challenge of normalizing life with dementia.
“The overwhelming number of people whose lives are altered by dementia, combined with the staggering economic burden on families and nations, makes dementia a public health priority,” Dr. Margaret Chan, Director-General World Health Organization, stated in “Dementia: a public health priority” in 2012. The report went on to outline six stages of acceptance of dementia beginning with ignoring the problem and culminating at normalization and acceptance of dementia as a disability.
Achieving this normalization stage goes beyond just creating awareness of dementia and expanding the resources for those experiencing life with it. It requires the acceptance of people living with dementia reflected through the availability of the same conditions offered to other members of the community. It requires society to examine the way we think and talk about dementia, and the way we act towards people it affects. Normalization demands we put an emphasis on reducing the stigma that is currently perpetuated by commonly held beliefs about dementia.
Many people believe that every person diagnosed with dementia is headed for an experience that leaves them bedridden, unable to move, eat, drink, love, connect, or continue life as the person they once were. The devastating impact dementia has had on many individuals and entire family units has contributed to this limited narrative that promotes stigma and gets in the way of achieving the normalization stage. It feeds into the idea that everyone living with cognitive changes is suffering from dementia.
While suffering exists at all stage of life, it doesn’t mean that a life is no longer worth living nor should it warrant a disempowering label like “sufferer” or “victim.” The challenges posed by a changing brain are real, and they can be incredibly difficult to navigate, especially if you don’t have the resources, support, infrastructure, or community you deserve to thrive despite struggle.
If you are someone who has lost the use of your legs and you don’t have access to a wheelchair, you are likely to experience more suffering than someone who has access to adaptive equipment, is able to live in a space that has doors wide enough to accommodate your equipment and is surrounded by a community of people that see you as an equal rather than a disabled sufferer. The same is true of someone who experiences dementia.
The presence of stigma limits people living with dementia from full social acceptance, fuels social inequalities, and reduces opportunities to participate in community. The concept of ‘dementia villages’ highlights the difference that is made for people when they are part of a community designed to normalize and humanize environments and supports that make living well with dementia accessible.
In a recent New York Times article, founder of Hogeweyk, the world’s first ‘dementia village’, Jannette Spiering framed the dilemma with current memory care communities perfectly when she said “You don’t want to be locked in for the rest of your life, you don’t want to live the rhythm of the organization.” Traditional memory care structures force people with a wide variety of remaining cognitive abilities to live the rhythm that makes the facility easier to manage rather than enable a person to maintain the freedom and autonomy they desire and deserve.
LiveWell CEO Michael Smith agrees that memory care settings are problematic. “The traditional model can hold limited beliefs about people affected by dementia,” says Smith. “Keeping people living with cognitive change separate from other people and other parts of their own campus can send an unintentional message about a person’s worth and sense of inclusion and belonging.”
LiveWell, just over 100 miles north of New York City, in Southington Connecticut, is a paradigm shifter offering unparalleled residential living options, resources, and community building, centered around living well with dementia. Like the communities mentioned in the Times article, LiveWell’s approach treats dementia like a disability and works because of its total commitment to the vision of normalcy for people experiencing life with dementia.
Like the Hogeweyk model established by Spiering in the Netherlands, LiveWell’s River Homes reflect the experience of living at home versus being institutionalized. Through campus design and the use of adaptive technology residents are free to move about and interact with their community. The normalized experience of living with dementia at LiveWell wasn’t just created for people living with dementia based on what organization leaders thought was needed. The campus redesign was a collaboration where the contributions of people who have lived experience were welcomed and incorporated to co-design homes they would want to move into and a campus that fosters a sense of true inclusion and belonging.
To achieve normalization in the River Homes, decision making power remains in the hands of the person living with dementia. “As a care partner, it is my job to figure out how to say ‘yes’ to resident choices,” explained long-time LiveWell Care Partner Virdie Lindsey. “It helps that the campus and technology we use give residents direct access to the outdoors. That may seem small, but it has a huge impact on a person’s wellbeing. When the environment supports someone’s ability to be independent, they feel a sense of belonging instead of being told “no” and feeling hopeless and trapped.”
The COVID pandemic helped many of us to experience the trapped feeling that traditional ‘memory care’ environments can create. One place, no matter how nice, cannot be a place to live, work and offer social connection. We all recognized the need for what sociologist Ray Oldenburg referred to as the ‘third’ place where we go between home (‘first’ place) and work (‘second’ place). These are places where we go to gather, exchange ideas, have a good time and build relationships. These are places outside of our home. Securing people with dementia in environments they have no agency over, cuts them off from the normalcy of the ‘third’ places we experience.
LiveWell recognized the need to create a ‘third’ place that could promote the normalcy of life with cognitive change, fuel social connection, and provide resources to prevent dementia and respond to the needs of people experiencing life with it. This place became the Resilient Living Center. Like the River Homes, the award-winning building and many of the resources in it were co-designed by people experiencing life with dementia and is homebase for The Empowering Partnership Network, a group of people living with dementia advancing advocacy, research, and resources.
The Resilient Living Center is open to the public and offers a variety of experiences and expertise where anyone can meet with a transdisciplinary team to co-design a treatment or prevention plan or dive into preventative strategies like healthy eating and exercise. The Resilient Living Center also cultivates opportunities for growth, social connection, and learning by hosting courses and programs, shows in the Performance Studio, and other events and activities that engage intergenerational community members.
Unlike Hogeweyk, LiveWell doesn’t distinguish itself as a ‘dementia village’, and there are no physical or metaphorical walls that separate them from the surrounding community. LiveWell has not only advanced the concept of normalizing life with dementia on their campus, but they have woven it into their work as leaders in a dementia positive movement promoting a broader dementia friendly community in Southington, Connecticut and beyond.
As the designated Dementia Friends USA partner for Connecticut, LiveWell worked with town officials, first responders, faith communities, and local businesses to provide education and training around dementia. With a deeper understanding of dementia, community partners began to make subtle changes that made the entire community more welcoming, accessible, and inclusive of individuals living with dementia. Thanks to the efforts of Southington, LiveWell isn’t a manufactured facsimile of a village exclusive to people living with dementia, it is a real town that includes and values people living with dementia as equal contributors to the community and society.
This LiveWell approach to community building works to define the experience of living with dementia by what you can do and is focused on cultivating the ability to thrive despite challenges and struggle even if you don’t live on campus.
Despite its innovative similarities to the communities described in the New York Times article, LiveWell wasn’t mentioned. “We are looking forward to the day when we are no longer the best kept secret in innovative dementia interventions. When that day comes, we will have the opportunity to meet so many more people before they are experiencing symptoms of advanced dementia,” says Katie Luce, Client Services Director at LiveWell. “The sooner we become partners in brain health, the soon we can work with people to maintain their strengths and cognitive abilities. Early intervention can drastically change the experiences people have after they receive a diagnosis of dementia.”
As cases of dementia continue to rise, the urgency for society to achieve the normalization stage of accepting dementia becomes even more acute. LiveWell and Hogeweyk are proving that models with a focus on normalizing and humanizing environments and experiences for people living with dementia are not just possible, they are the future of civilized care across the globe.