Dignify Dementia

Background Statement

As a child, I gained a profound appreciation for the wisdom and experiences of older adults during the time I spent with my grandparents and their community. This allowed me to understand the significance of graceful and independent aging, emphasizing the importance of treating each senior as a unique individual and an active participant in their own care. Observing my own parents' aging process has only reinforced the idea that this vulnerable population warrants our patience, advocacy, and opportunities to thrive as they grow older.

My commitment to public health, and my dad, Jim, who lost his battle with Dementia with Lewy Bodies and Parkinsonism in 2024 are my motivation and inspiration for creating Dignify Dementia and doing this work. My mom (his wife of 54 years) and I were his primary care partners from diagnosis in late 2018 until the day he died last year. We did our very best to care for him so he could stay in our home, but even with two of us, there were days when it was overwhelming and all-consuming for each of us.

My dad is quite honestly my hero to this very day. He had this degenerative, fatal, and cruel disease and yet, he woke up with a positive attitude most days and faced his dementia with tremendous courage. He was always a man who tried to help others when he could, and one of the first questions he asked when we got his diagnosis was, how can we help other people like me? I told him we'd see what we could do to help him first, but then I promised him I'd find a way to help other people like him and other families like ours.

Based on what we were told by all the doctors and all the research I did on my own, establishing a routine was key for him to feel the most comfortable. With that in mind, I developed a set of resources for him that he used daily until 2 weeks before he passed. Even as his disease caused significant declines both cognitively and physically, he still completed them every day. He said they helped him “make sense of things” and “keep some of the crazy out” for him. From what my mom, his providers, and I observed, they helped him engage with us and others, and they helped him stay anchored in the present. After years of researching and tailoring this toolkit of resources for him and encouragement from his expansive healthcare network, I finally figured out how I could help him help others, so I started Dignify Dementia (www.dignifydementia.org), a website where the cognitive wellness toolkit components are available for people with all kinds of dementia, including Alzheimer's, Parkinson's Disease, Lewy Body Dementia, and any other neurodegenerative disorders affecting cognition.

I know I can't cure dementia with my efforts, but if I can make life any easier for those suffering like him and give support to other families like mine, I feel I'm honoring his wishes. To hear more about our journey, please check out our website (dignifydementia.org) or follow us on Facebook or Instagram.