More than 22,000 people in Rhode Island live with Alzheimer’s disease, and that number is expected to grow as the state’s population ages. The Alzheimer’s Foundation of America is holding a conference in Providence on June 17 to help educate people about the impact of the disease on local families.
One of the speakers at the conference will be Katie Brandt, a Portsmouth resident who serves as director of caregiver support services and public relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. She spoke with Ocean State Media’s Luis Hernandez about how her family has been directly impacted by Alzheimer’s.
Interview highlights
On how she became a full-time caregiver
Katie Brandt: My husband Mike and I had been married for five years, and we were thrilled at the arrival of our wonderful son, Noah, who happens to be a senior at Portsmouth High School this year. It was around that time that Noah was born that Mike started to experience changes in his personality and behavior and thinking. He had trouble at work, he had disruptions in his relationships with friends, and he wasn’t making good decisions about money or even things like how to be safe. After visiting eight different medical and mental health professionals, Mike was accurately diagnosed with frontal temporal dementia at the age of 29.
Of course, I was connecting with my family, my mom especially, and I remember we had a long chat the weekend after his diagnosis; that Monday night. Unfortunately, that night she had a heart attack and passed away in her sleep. And with the expected grief that came with her passing came an unexpected responsibility, because 17 days after my mom’s passing, my father had a follow-up appointment where he was diagnosed with Alzheimer’s disease at the age of 59. And so I found myself, at the age of 29, in charge of two adult men with progressive neurological disorders leading to dementia – one with FTD, one with Alzheimer’s – and my infant son. And so that launched me into the role of family caregiver.
I got myself connected with a mental health provider, a counselor for me, and the second is I showed up at a family caregiver support group. Both of those things were really hard to do, and looking back, they were both the things that carried me through so many difficult decisions and hard days.
On what Rhode Islanders can do if a loved one has been diagnosed with a brain disease
Brandt: First of all, if your loved one has been diagnosed with Alzheimer’s or any related dementia, you need to connect with the Alzheimer’s Association, and here in Rhode Island we have an incredible team. There are organizations that are here today, like the Alzheimer’s Association and the Alzheimer’s Foundation of America, that want to provide connections, free education, and a place where caregivers can reach out for that listening ear and support to know that they are not alone on this journey.
I tell families: share this news with someone who you love and trust. You are not going to be able to navigate this journey alone. You’re going to need emotional support. You’re going to need friends, family, and community to lean on. The second thing, you need to connect with a certified elder law attorney and talk with them about legal and financial planning after a diagnosis of Alzheimer’s or a related condition. Some families might say to me, “Well, I did planning. I already have a will. I already did that years ago.” Getting a diagnosis of Alzheimer’s or a related dementia in your life can change the trajectory of your life. It can change your financial and medical needs, and you need to check in with a certified elder law attorney to make sure that any plans you made before align with this new reality.
On preserving the dignity of a loved one suffering from brain disease
Brandt: Families that are impacted by dementia have a different experience than, say, a family impacted by cancer. A patient living with dementia; that disease attacks their ability to think, make plans, and even communicate. As early as possible, you need to have these conversations, the real heart-to-hearts, so that the people who are advocating for you, the people who are caring for you, know your wishes because you might not be able to express them later on in the disease.
Just because a diagnosis of dementia has come into your life does not mean that joy has to go out. My dad is still with us today. Recently, to celebrate his 77th birthday, I hired a local farm to bring some baby farm animals into his skilled nursing facility. Dad and I had this really nice moment where he was holding a baby lamb, and we were both petting the lamb and sitting in the sunshine. And I thought, “You know what? This is a new memory of joy.” Maybe I have to be the memory keeper for Dad now, but I think we both got something out of that experience.
