Enduring love through dementia

Author Scott Rose shared his book, “We Danced: Our Story of Love and Dementia,” about his wife’s terminal battle with Frontotemporal Degeneration (FTD) recently at The Kensington Falls Church assisted living facility recently. The event was co-hosted by AARP Virginia and Insight Memory Care.

Rose was raised outside of Portland, Ore., where he still resides. He spent his career planning and managing the design and construction of schools and spoke at regional, state, and national venues.

He said his greatest joy was his marriage to Maureen. They traveled, loved, and danced their entire marriage. Scott cared for Maureen throughout her illness, which lasted for 3 1/2 years from diagnosis to her death in 2019.

After her death, he decided to write a book about his marriage and the challenges the couple faced navigating FTD. “We Danced” is a loving and thoughtfully written tribute to Maureen and their years together.

The details of her journey with FTD and Rose’s experience as a care partner are presented in a manner that truly illustrates his devotion to her. The ways in which they continued to celebrate life after her diagnosis and the tips shared are valuable insights for those living with dementia and their care partners.

“I was so unprepared for the unconditional love that my wife Maureen provided me when we first met, but even more so to have it ripped away years later by FTD. While much of our book outlines our FTD journey from symptoms to diagnosis to care to the daily dance, it is first and foremost a love story,” he said.

Rose said he has done about a dozen of these kinds of presentations across the country so far and his purpose is to “raise awareness to this form of dementia that ravages an ever-growing population.” The book describes the financial, physical and emotional toll the disease took on the couple.

“I call this ‘our book,’ as Maureen’s words run infused through the narrative in letters, journal entries, poems, and spoken words as much as my own. Even in her waning days--where words were scarce--she managed a look into my eyes and softly whispered, ‘We are us,’” Rose said.

He has facilitated a regional caregiver support group in the Portland area for three years as a volunteer for the Association for FTD, and co-facilitates a caregiver support group. He also contributes to the social media site for the Association for FTD.

Rose continues to raise FTD awareness through book readings, talks, and podcast interviews with “Being Patient” and “Remember Me” regarding love, companionship, and dementia. He spoke on panels at the 2019 and 2022 Association for FTD national conferences.