ORONO — When a loved one develops dementia, family and friends often find themselves taking on a role they were never trained or prepared for.
Caregivers navigate the healthcare system, manage expenses and medications and coordinate with family members, all while keeping vigilant of safety concerns and behavioral changes.
In 2024, caregivers across the United States devoted an estimated 19.2 billion hours to unpaid help for dementia patients, including 102 million hours in Maine and 252 million in Massachusetts, according to the Alzheimer’s Association. Among those surveyed, 59% reported high or very high stress due to caregiving.
To help, researchers at the University of Maine are testing if an online platform called Care-Wallet, which provides personalized support for planning care, collaborating with family members and accessing benefits and resources, could provide some support. The program includes personalized sessions with care managers and access to an online care management platform.
“Caring for a loved one with dementia is incredibly demanding. Immediate needs can overwhelm thoughtful, longer-term planning,” says Tom Meuser, a clinical psychologist and gerontologist who provided input on the platform’s development. “Care-Wallet offers expert, evidence-informed guidance that recognizes these challenges, providing personalized, flexible support to address changing needs.”
Caregivers who provide or organize care for someone with Alzheimer’s disease — or any type of dementia — and are interested in growing their confidence as a caregiver are invited to participate. Participants must be new or newer users of Care-Wallet, and support dementia patients who do not live in full-time care facilities and reside in Maine or Massachusetts.
The study is open to both new and experienced caregivers. Early results suggest that those who are starting may benefit most, but seasoned caregivers — especially those helping loved ones through transitions to home-based palliative or hospice care — may also find valuable support.
Participation is completed online and entails using Care-Wallet and answering questions through three surveys and a 30-minute interview. The estimated time commitment is five to eight hours spread over several weeks. All information provided will be kept confidential.
Participants will receive $100 for completing surveys and an interview, as well as free access to the Care-Wallet program. Those who wish to participate must complete a screening survey online and may email the study’s coordinator, Rachel Coleman, with questions.
This study is led by Jennifer Crittenden, associate professor of social work at UMaine and associate director for research at UMaine’s Center on Aging in collaboration with EmTech Care Labs.
