"Too often people think of dementia as a death sentence, or maybe something to be ashamed of, rather than what it is: a chronic disease that a person is likely to live with for many years. Because of this, we miss out on opportunities for people to continue to live well, with purpose and joy.
I am excited about the work the National Council on Dementia Minds is doing to empower people to live their best lives, and to transform how society thinks about living with dementia."
"Dementia Minds is composed of a group of remarkable individuals. Each member demonstrates courage as they share important and valuable personal experiences, insights, and expertise in living with their brain changes. As a group, they provide their audiences with perspectives from a variety of dementias. As a team, they are unified in their desire to have others better appreciate and understand the very real challenges and issues they cope with each day. And yet each person communicates a firm belief that living purposeful, meaningful, and hopeful lives is not only possible but happening on a regular basis.
Members of this group, guided by Brenda Roberts have provided our team with programs that have given us details and specifics on so many brain changes they have to navigate and sometimes struggle with to keep their lives going. Their thoughtful and sometimes humorous observations among group members and with their audience is engaging and rewarding.
I highly recommend the programs they offer to any organization, educational conference, or gathering of people that want to know more about this thing called dementia or intend to provide services to people who are living with dementia. Their programs use a combination of recorded clips and real-time questions and answer sessions. After each of their offerings, I have found my world is enriched by what was shared.
It is my honor to have a strong and positive relationship with this amazing team. I hope you get a chance to get to get to know them and all they have to offer, as well!"
"This is an amazing initiative that should be shared with families, health care professionals, researchers, etc. Interacting with the Black Dementia Minds group has been a life-changing experience for me. I have gained a new outlook on life that now influences my research. To improve the quality of life for persons living with dementia, we must listen and learn from them."
"Working with the Dementia Minds was an opportunity that became available to me as a PhD student that I simply could not pass up. The Dementia Minds have been invaluable to my development as an early career nurse researcher focused on families living with dementia. They graciously shared their experiences and perceptions with me that continue to challenge and reshape my thinking as a researcher and as a nurse. My future research will prioritize those living with dementia and the perspective of living well even with the disease, which I can honestly say was inspired by the stories shared by the Dementia Minds. I am so grateful for this group’s generosity and bravery to share their knowledge and experiences with strangers in the attempt to educate the community about what it truly means to live well with dementia."
"When I first started volunteering with the Dementia Minds, I thought ‘won’t it be great to help these folks.’ What I have found is that I have been challenged and changed through interacting so closely with persons living with dementia. It is an honor to sit with this group and listen to their stories with empathy and wonder. I am thankful each day that I met Brenda through the Journey with Dementia Minds program."
