Help Me Sing My Song

Barbara Lewis and Mary Archer know first-hand and close-up what it means to care for someone who develops dementia at a relatively young age. Barbara's husband started having cognitive challenges
when he was 55 years old, while they were still working and parenting their eight year old daughter. Mary Archer had created a dementia care business which was specifically designed for younger people like Steve. He became one of her first clients, where he received the support and socialization they'd been seeking. Over the years Barbara and Mary have found too few resources focused on younger people with dementia, and realized that their experiences, and those of others they'd met, were stories that needed to be told.

Young-onset dementia generally refers to someone who has received a diagnosis when younger then age 65. A person with young-onset dementia will tend to lose their job and driver's license well before they turn seventy. They'll lose earning potential, while they sometimes still have dependent children to care for, a mortgage to pay, and even elderly parents to look after. The younger person with dementia may be in the prime of their career, beginning to plan for retirement, and be physically active and in excellent health otherwise. It can be very difficult to balance all of this while experiencing gradual and steady cognitive decline.

Recognizing there is no one clear path for dementia caregiving, this isn't a how-to book. Rather, it is a collection of stories that offer encouragement, help trigger creative caregiving ideas, and remind young-onset families they are not alone.

Barbara Lewis cared for her husband for more than a decade while working and raising their daughter. She is a management consultant specializing in the field of appreciative inquiry, a story-based process that focuses on understanding what works as a foundation for creating what we want, as an alternative to focusing on problems. During her journey as a caregiver, Barbara realized that her work was one of the lifelines that kept her sane and helped her be a stronger caregiver. Studying and appreciating what was working and finding that better way had become second nature to her.
Mary Archer worked as a volunteer and employee in various dementia care settings over the course of twenty years, including nursing homes and adult day programs. She often noticed those who had mild forms of dementia, or who fit the description of young-onset, and wondered if they were being well served. Their needs seemed different than those who were older or had more advanced dementia. Did they need more physical activity? More tasks to keep them feeling productive? More opportunities to share their stories? More social connections? How could they make the best of their few remaining years? Mary created her non-profit caregiving business with these questions in mind.