Young Onset Frontotemporal Degeneration: A Family Story
About the Author
Katie Brandt, MS
Caregiver Support Services Director
Frontotemporal Disorders Unit
Massachusetts General Hospital
149 13th Street, Suite 2691
Charlestown, MA 02129
Katie Brandt, MS is a caregiver who knows first-hand how essential the support of community is for those affected by rare disease and dementia. Katie lost her husband Mike to the rare disease, Frontotemporal Degeneration (FTD), when he was 33 years old. Shortly thereafter, her father was diagnosed with Alzheimer’s at the age of 59. Today, Katie is an advocate, an educator, and a volunteer in the rare disease and dementia community. Katie’s story of love, loss, and resiliency is unique, but it has universal truths.
Katie has started a new campaign, Love Is Out There, to raise awareness for FTD, caregiving, and empowering families to take the power back from rare diseases. Through social media, community events, and educational forums, Katie and her network will raise awareness for families struggling with FTD and let them know that resources, and support are out there. She have has spoken at colleges, conferences, hospitals, the Massachusetts State House, and on Capitol Hill to share her experiences.
In the summer of 2012, she contacted The Association for Frontotemporal Degeneration and offered herself as an advocate and a volunteer. It was the beginning of a great relationship and a new career for Katie. Currently she serves as the Caregiver Support Services Director for the Frontotemporal Disorders Unit at Massachusetts General Hospital in Boston.
Katie Brandt, MS
On my ninth wedding anniversary, I received a bouquet of two dozen roses. Fuchsia pink, ruby red, and vibrant orange, as bright as the sunshine outside on that warm August day in 2011. Our three-year-old son, Noah, loved pushing his face into the blooms, breathing in and out to inhale the strong scent. My father remarked at their beauty each time he meandered into the kitchen for a new cup of coffee. The thing is, the roses were not from my husband; they were a gift from a close friend. My husband, Mike, couldn’t buy me flowers. He didn’t know it was our anniversary. He didn’t even know it was summer.
In 2009, Mike had been diagnosed with behavioral-variant Frontotemporal Degeneration (FTD). FTD is a rare progressive neurological disorder that causes damage to the frontal and temporal lobes of the brain. Unlike Alzheimer’s disease, where loss of memory is often the first troubling symptom, individuals with FTD may experience difficulties communicating and making decisions. They may also behave in socially inappropriate ways. In the end, FTD causes dementia and makes it impossible for the person to function independently, including being unable to speak, walk, or swallow. Currently, there is no treatment to slow or stop the progression, a patient’s prognosis is terminal. Typical age of onset is between 45 and 65. At the time of diagnosis, Mike was 29. By 2011, he required the type of 24/7 care that only a skilled nursing facility could provide. The kind gesture of the roses reminded me of another thing he could not do.
There was another person at home with me when the flowers arrived; an Aging Life Care Manager, attempting to perform an intake for care management services amidst hugs, tears, and a basement search for a vase worthy of their beauty. It makes sense that a 31-year-old woman caring for a three-year-old at home and a husband nine miles away in a nursing home would need support. But, as my Aging Life Care Manager realized, my primary need was not centered around my husband — it was with my Dad.
In 2008, my father had displayed a concerning level of forgetfulness and agitation. Cognitive issues were impacting his ability to function at work and at home. Over the next year, Dad had many medical appointments and scans. He completed rigorous neuropsychological evaluations and we nervously awaited a follow-up appointment set to determine a diagnosis. Seventeen days before that appointment our family was blindsided by a devastating loss. My mother died unexpectedly at the age of 58. Then came Dad’s diagnosis of Alzheimer’s. He was 59. Barely able to keep my head above water as I treaded the new roles of caregiver and single parent, I felt myself drowning after my father crashed his Jeep into the back of a truck, totaling the vehicle and having no recollection of the event. How would I take away the keys and keep him active each day? Who could watch him while I was at the nursing home with Mike? How could I afford this new expense? My head swam with questions and no answers.
As a new mother, I attended baby yoga classes and the free story hour at the library to meet other moms. Our shared experiences of toddler tantrums, preschool sign ups, and sibling rivalry provided a great space to brainstorm solutions together. So, when I became a caregiver, I joined a support group. It was here that I heard about the services that an Aging Life Care Manager could offer. To me, it sounded as though they could be a guide through this new community of Elder Care and dementia support services. I was desperate to talk to someone who would understand my experience. I didn’t have a single friend who was touring adult day care centers, and I needed to feel like I wasn’t the only one living as a dual caregiver and parent.
At medical appointments for my Dad, we talked about medications, sleep habits, and the value of exercise. But, the doctors couldn’t tell me about community-based programs or ways to get financial support for services and I didn’t know where to begin. I didn’t know if Dad should go to daycare or have a caregiver at home. I wondered if hiring a person to watch my Dad was the same as hiring a sitter to watch my son. I had devoured books on child development, but not read up on a single book about dementia. I felt unprepared to be his caregiver.
Looking back, I can point to that first phone call with my Aging Life Care Manager as a turning point in my role as a full-time caregiver. The care manager provided me with a patient and caregiver-centered evaluation that took a holistic look at our entire family. This evaluation validated that I needed extra help for my father and led to the formation of a plan targeted at meeting his cognitive needs and offering me respite. My care manager helped me hire my first companion for Dad, coordinating interviews, and attending as my support. I was able to go back to them at my own pace, reaching out as we experienced new transitions and new care needs.
After my husband passed away in 2012, I began working professionally with caregivers and today I am the Director of Caregiver Support Services in the Massachusetts General Hospital Frontotemporal Disorders Unit. My personal experience as an FTD and Alzheimer’s caregiver connects me with the caregivers I work with each day. Our Boston-based clinical research program draws families from all over New England, and even across the country. I am not able to work with each family individually in their home community, but I am able to educate them about the general benefits of services available, including Aging Life Care Management Services.
In my approach to working with families, I focus on three main areas; emotional support, connections with community resources, and strategies for behavior management. When I think about my interactions with my own care manager, I know that I received support in all three areas with the added tangible benefit of a written plan to move forward. I educate my caregivers today about the benefits of having an expert lead them through the new territories of diagnosis, care management at home and in the community. I encourage them to lean on professionals who are trained in best practices and remain on the cutting edge of care and rights for individuals with cognitive impairment. I let them know that the plans they put in place may improve health outcomes not only for their loved ones, but also for themselves.
When I think of August 10th, I think of all the anniversaries we shared together; special dinners at home, day trips to the beach, and little gifts we gave to one another. Our ninth wedding anniversary was our last. We didn’t share a glass of wine or watch the sunset over the ocean together, but I would like to think of my meeting with my Aging Life Care Manager as an act of love for Mike. The care plan we wrote that day was a new set of vows, a testament to stand by him in sickness, and protect his health to the best of my ability. When I think of my wedding day, sometimes I laugh and sometimes I cry. When I think of our ninth anniversary, I feel proud to have lived my vows and hope Mike would feel that way, too.