The Roon 5 Highlights some of the inspirational creators on Roon. This week, hear from advocate and caregiver Katie Brandt. You can watch all of her Roon answers here
When were you first impacted by dementia?
I was first impacted by dementia when I was a young woman and my Memere, my mother’s mother, was unable to attend my college graduation or my wedding because she was living in a skilled nursing facility with late-stage dementia due to Alzheimer’s disease. I was very close with her growing up and was sad that she wasn’t able to be a part of what I saw as milestone moments in my life. Reflecting back, this was such a mild impact compared with the changes that dementia brought to my life when I was 29. That year, my husband was diagnosed with behavioral variant Frontotemporal Dementia at the age of 29 and my father, a veteran, was diagnosed with Alzheimer’s disease at the age of 59. The confirmation of these medical diagnoses also gave me a diagnosis of caregiver, one that I still live with 15 years later.
What inspired you to dedicate yourself to dementia advocacy?
I have been inspired to dedicate myself to dementia advocacy because when I was in the deepest days of caregiving, I felt swallowed by the experience and invisible to the world outside of my caregiver role. Dementia was suddenly the lead character in the story of my life, and I wanted a chance to rewrite the script. Advocacy gives voice to the losses that our family experienced due to dementia and it has helped me regain my own sense of personhood. It has been incredibly healing to share my story to connect with other caregivers, inspire funders and policymakers to improve research, care, and services for Alzheimer’s disease and related dementias.
Tell us about an inspirational moment in your journey with dementia?
An inspirational moment in my journey happened when I was working with the staff in my husband’s skilled nursing facility. My husband, Mike, was living in the severe stage of dementia due to a diagnosis of Frontotemporal Dementia and he had been hospitalized due to recurring aspiration pneumonia. I realized we were at a new stage of his journey and decided in collaboration with his healthcare team that it was time for him to enroll in hospice. Together, we made plans to discharge him from the hospital and return to the skilled nursing facility to receive this final stage of care. Mike left the hospital by ambulance and after completing paperwork, I followed in my own car. Upon entering the skilled nursing facility, I was met with a staff member who let me know that Mike would move to a private room. While this was good news for Mike’s care, I felt my heart sink. Over time, I had decorated every inch of Mike’s room with poster-sized photos of our family, mostly centered on our preschool-aged son. I was exhausted after the experience at the hospital and didn’t know how I would find the energy to remove and re-hang each one. I was giving myself a pep talk as I walked down the hallway when I turned the corner onto Mike’s unit. The door was ajar to his new room and he was already snuggled into bed, covered by the fleece blanket I had made for him, listening to his favorite music and surrounded by every single poster from his old room. His stuffed animals, special pillows, and small lamp for soft lighting were all arranged for comfort. I was suddenly overwhelmed with a feeling of gratitude for the authentic care and compassion the staff showed to our family. It remains one of the most powerful acts of love that I have ever experienced. It is also an example of genuine partnerships that can grow between families and professional staff along the journey of care.
What’s your best piece of advice for someone on the dementia journey?
My best piece of advice for someone embarking on the dementia journey, whether you are a person living with a diagnosis or a caregiver of someone who is living with dementia, is to know that you don’t have to walk the journey alone. We do not yet have a cure for dementia, but we do have a cure for the isolation and loneliness that may come with a diagnosis. Reach out to the Alzheimer’s Association, the Association for Frontotemporal Degeneration, or your local Area Agency on Aging to learn more about opportunities for support groups, educational conferences, and advocacy initiatives. There is a community of families ready to guide you with care and understanding every step of the way.
What do you love about Roon?
The thing I love the most about Roon is the incredible caliber of experts who have contributed their knowledge, expertise, and passion to the Roon community. For many families, the journey to a dementia diagnosis is marked by uncertainty and misinformation. Becoming connected with a community that can provide trusted information is the first step in planning for care that centers on personhood and dignity at every stage of life lived with dementia.
