The Dementia Care Study (D-CARE) is the largest clinical trial of dementia care to date. D-CARE is coordinated by clinicians and scientists at UCLA in California and includes UTMB as one of four study sites. D-CARE compares 2 ways of caring for
people with Alzheimer’s disease or other dementias and their unpaid caregivers and aims to determine which of the programs best helps manage difficult dementia symptoms while reducing caregiver stress.
At UTMB, 478 patients with dementia and their family caregivers have been enrolled in D-CARE. During the 18-month long study, they receive regular care from their doctor while D-CARE provides additional support and services from either a UTMB Nurse Practitioner
or a trained Care Consultant with the Alzheimer’s Association. All participants are provided an information packet featuring the Alzheimer’s Association Helpline (1-800-272-3900).
Caregivers who have completed the D-CARE study state that having an unbiased opinion and support is critical, whether from a Nurse Practitioner Dementia Care Specialist, a Care Consultant or the Alzheimer’s Association Helpline. Participation in
a caregiver support group is essential to cope with providing care for a loved one with dementia.
One caregiver shared her journey of caring for her husband with Lewy Body Dementia:
“We were told that the condition could be treated but not cured, and it was progressive and irreversible. We were confident that we could overcome the disease with medication, therapy, brain exercises, good nutrition, physical activity, prayer—something.
We were wrong. We could not stop it. My intelligent, helpful, happy husband slowly became unable to think rationally, dysfunctional, and unhappy. He could no longer drive, take his own medications, or use familiar tools.
Eventually, I enrolled him in a Memory Care assisted living facility for his own safety. It felt like I was holding onto my husband’s hand, struggling with all my might to pull him out of the quicksand of dementia, and failing. My failure to
save him left me feeling incompetent, overwhelmed, and angry. I was lost.
My doctor told me about D-CARE and I enrolled. Through ZOOM meetings and contacts with D-CARE staff, I have made friends with other caretakers. The encouragement and information that I have received through D-CARE are invaluable. What I value most
is the assurance that I am not alone, that I am not a failure, and that I can handle whatever happens in the future with the help of others. As my husband is pulled down into the quicksand of dementia, I continue holding his hand. But this time,
I sing songs to soothe and comfort him. And my friends at D-CARE hold my hand, helping me sing, soothing and comforting me.”
By testing a treatment’s effectiveness in “real-life” situations and including people from minority groups and rural communities, D-CARE study results should be useful in improving the quality of life for family caregivers.
Special thanks to all D-CARE participants, family caregivers, Anita Laffey, and the UTMB D-CARE study team.
D-CARE is funded by the Patient-Centered Outcomes Research Institute (PCORI) and the National Institute on Aging. Researchers expect to complete the trial in 2024 with results available in 2025. www.dcarestudy.org