By Lisa Rapaport
(Reuters Health) – Dementia patients and the family members who care for them may have a better quality of life when they have access to telephone and online support, the results of a clinical trial suggest.
Researchers tested the effectiveness of a program known as the Care Ecosystem, which provided patient navigators and access to nurses, social workers and pharmacists along with regular phone check-ins to caregivers of dementia patients. After one year, dementia patients in the Care Ecosystem program had better quality of life and fewer emergency room visits and their caregivers had a lower risk of depression compared to a control group that received only usual care, the study found.
“We demonstrated that a dementia care program delivered over the phone and web can improve outcomes important for people with dementia, their caregivers, and health systems,” said Katherine Possin, lead author of the study and a researcher at the Memory and Aging Center at the University of California, San Francisco.
“By delivering care over the phone rather than in-person, the Care Ecosystem offers unprecedented opportunities for scale because there are major geographic gaps in the availability of dementia specialists, and also many people with dementia have trouble leaving their homes,” Possin said by email. “The Care Ecosystem can reach families wherever they are.”
Researchers randomly assigned 780 patients and their caregivers living in California, Iowa or Nebraska to join the Care Ecosystem program or join a control group of people who received information about how to contact community support groups.
The 512 patient-caregiver pairs assigned to the Care Ecosystem got a care team navigator – a dementia-care guide who helps family caregivers. Families could contact navigators as often as they wanted with any questions or concerns related to dementia.
Care team navigators helped caregivers plan for common challenges in dementia like managing medication or planning for future care needs. Dementia specialists including nurses, social workers and pharmacists, could also get involved in more complicated cases.
Over the year-long intervention, people in the Care Ecosystem program spoke to navigators by phone about 15 times, on average.
One limitation of the study is that it lasted only a year, and family caregivers often tend to dementia patients for many years or even decades, the researchers note in JAMA Internal Medicine.
The study team also assessed emergency room visits by surveying caregivers, not by verifying these encounters in medical records.
Even so, the results add to growing evidence suggesting that phone support can make life easier for family caregivers, said Dr. Jennifer Tjia, an associate professor at the University of Massachusetts Medical School in Worcester who wrote an editorial accompanying the study.
“The phone and web-based dementia-care model used clinically-supervised, unlicensed care navigators to screen for common problems, provided social and emotional support by listening to the concerns of the caregiver, and linked personalized resources with the caregivers,” Tija said by email. “This model also helped to overcome the isolation that often comes with being a family caregiver.”
The Alzheimer’s Association provides internet-based resources, an online community and chat resource, and local support groups to help family caregivers (here: https://bit.ly/2oiuDX8).