Let’s Picture It and Then Work Together to Make It Happen
by Diane Slovin,
PAC Director of Organizational Outreach
Imagine a dementia friendly world. What would that even look like? A supportive, engaging world…. A world filled with patience, understanding, and empathy? Dementia-friendly is trending, right? Twitter shows lots of accounts with dementia friendly in their names. LinkedIn is jam-packed with dementia friendly groups around the world. Libraries, grocery stores, restaurants, and other businesses and organizations are taking steps to advance dementia friendliness in their communities. What are their missions? Is such a world even possible? Is it possible that our entire world can take a time out, breathe and relearn the way that we connect with others?
I spoke with Isabella Morgia Di Vicari who, with her husband Jeff Morgia, owns the restaurant, The Meatball Shoppe, in Orlando, Florida. The idea of having one day a week dedicated to a dementia friendly environment is an idea that came to them because they have family members who have dementia. They know how challenging it can be to take people living with dementia (PLwD) out for a dining experience. Watch their story here:
Link to news story - Click here
Six years ago, in Europe, attention was given to this issue. In 2014, the Glasgow Declaration was launched to create a unified European dementia strategy, with the hope that every European nation would develop its own national strategy to recognize dementia as a public health priority and develop global action plans. That’s a huge charge for those countries. Among the priorities identified were: the right to a timely diagnosis, the right to person-centered, quality care throughout their illness, and the right to be respected as an individual in their community. Some of the priorities of this initiative are: Raising public awareness of dementia and dispelling the associated stigma, improving the array of community health services offered to provide comprehensive care at every stage of the illness, developing interventions to support family caregivers directly, and developing and expanding resources to train care professionals in the community and in hospitals
The Alzheimer’s Society in the UK uses this description. “A dementia-friendly community is a city, town, or village where people with dementia are understood, respected, and supported. In a dementia-friendly community people will be aware of and understand dementia, so that people with dementia can continue to live in the way they want to, and in the community they choose.”
In 2015, President Barack Obama hosted the sixth White House Conference on Aging. Attention was shed on the importance of support for care partners, both paid and unpaid. It was noted in the final report from this conference that caregiving is demanding work and that care partners need to be supported and sustained with appropriate resources. In the U.S., one initiative that was a result of that WHCoA was the Dementia Friendly America (DFA) movement. It was based on the forward-thinking state of Minnesota’s plan, which was launched as a successful statewide initiative entitled ACT on Alzheimer’s in 2011. DFA describes themselves as a “national network of communities, organizations, and individuals seeking to ensure that communities across the U.S. are equipped to support people living with dementia and their caregivers. Dementia friendly communities foster the ability of people living with dementia to remain in community and engage and thrive in day to day living.”
That’s a lot of language, right? Sounds like everything’s going great, right? We’ve identified all of these critical issues and we’re putting together plans to make things better. Day by day, strides are being made, people are making a difference. Support for people living with dementia and their care partners is getting attention. But yet, most anyone we know has a friend, family member, neighbor, or acquaintance, who is facing the challenges of finding proper care, support, and training for themselves and their loved ones.
Those of us who know a person living with dementia understand that there’s lots of work to be done. Identifying the issues and making a plan is a step in the right direction, but how do we get the necessary resources and services out into our communities? A recent hospital stay for my dear aunt, proved to me that often people working in healthcare have simply not been trained to communicate with people living with dementia. Each time a member of the hospital team entered the room, asked my aunt her name and if she knew where she was, it underscored for me the importance of the missions of the initiatives I’ve described above and other like-minded organizations, like Positive Approach® to Care. Although my aunt was able to tell them her name each time they asked, her response to the “do you know where you are?” question was probably not what they anticipated. "I’m right here" she said. And she was exactly correct. She was right there, right in front of them. Was it really necessary for them to put a person living with dementia through the anguish of asking that question over and over? Were they honestly thinking they were going to get “I’m on the 5th floor at the hospital?” I operated then and am continuing to operate under the theory that they were all unaware. But most of us recognize that there is a lot of unawareness out there.
Let’s do something about it. We can’t get discouraged. Let’s look at this scenario and the many others that we hear about all too often, as opportunities we’ve been given to help change the tide. We have to believe that the work we are all doing every day will help to make a difference. Has your community taken notice of the importance of moving towards a place that is welcoming, supportive, and engaging to people living with dementia and their care partners? Are there programs at a local level that you could be involved in that would benefit from the knowledge and skills that you’ve gained from your connection to PAC? Imagine a dementia friendly world with you and your PAC skills being part of the change because as we like to say, Until There’s A Cure, There’s Care.
Diane comes to Positive Approach® to Care (PAC) from a long-term care environment where she found her passion for providing dementia education and support. She holds a B.S. in Education from Indiana University and is a lifelong learner. Diane finds that there is still so much to learn by observing, listening to, and interacting with our elders. Her experience facilitating dementia care partner support groups allowed her the opportunity to provide family members with strength and support during this challenging time in their lives. Prior to coming to PAC, Diane spent years of her career working with children and teens, both as a professional in the not-for-profit arena and also as a board member for a summer camp. She now finds that working with people living with dementia and their family members has become her favorite demographic. As the Organizational Outreach Director for PAC, Diane loves making connections with organizations and sharing available PAC resources and services with them with the goal of increasing the knowledge and skills of their staff, families, and community.