A man caring for his wife who is in the early stages of Alzheimer’s disease faced a problem.
His wife didn’t want to change for bed. She insisted in sleeping in her clothes. He was troubled. It raised concerns over her hygiene, as she saw no need to put on fresh clothes the following morning or the morning thereafter.
How could he get her to change what was becoming a habit? Confronting her would be unsettling and raise other issues. He wanted to help but didn’t know how.
The man described what he was going through to Kim Morris, case manager at Cornerstone Adult Services, where his wife is a client. He is no stranger to Morris, as he is one of five primary caregivers at the Warwick Neck center involved in a nationwide research study. Cornerstone is the only Rhode Island facility to have been selected to participate in the Improving Outcomes for Families and Older Adults: Adult Day Service Plus (ADS Plus) study undertaken by Johns Hopkins University and the University of Minnesota.
Morris meets regularly with the family caregivers at the center that are members of the ADS Plus group.
Another five from the center in Apponaug serve as a control group. Addressing questions about how to cope with those who have memory loss is not unusual for those working at the two centers. Questions cover the gamut, from how to deal with family members who might wander away to those who insist they want to drive or get up in the middle of the night thinking it’s the start of a new day.
In this case, however, and as a member of the research study, the man was not just given tips but a structured plan. Rather than waiting to the customary bedtime, the home routine changed so that his wife would change clothes in the afternoon. His experience was carefully documented as part of the study.
It sounds simple, but as Dottie Santagata, administrator at Cornerstone Adult Services, points out, it is a structured approach that over the past year has had “amazing” results for caregivers and as a consequence for those they are caring for. When Santagata learned of the research study more than a year ago she applied and was thrilled when Cornerstone was picked. Some funding is provided Cornerstone and participants. It’s not much and really doesn’t cover the added staff hours.
“It’s not about the money we’re getting paid,” Santagata said of Cornerstone’s involvement. “It’s about being able to provide intensive support to caregivers and to be innovative and on the cutting edge. This is a proven strategy to be more successful.”
It’s an outcome Joseph Gaugler, long-term care professor emeritus at the School of Nursing at the University of Minnesota, is looking for. As a director of the research project funded through a $2.5 million grant from the National Institutes of Health, Gaugler is looking for better outcomes for caregivers and those they care for. Goals include delaying nursing home care for patients and reducing stress for caregivers.
Currently, 150 caregivers from 30 sites across the country are participating in the program. He is hopeful of expanding to involve 300 primary caregivers. He said four interviews ranging from 30 to 45 minutes are conducted with each of the participating caregivers. Rarely, he said, do caregivers miss their interviews and in many cases discussions last well beyond the allotted time.
Gaugler said nationwide, each Alzheimer’s patient presently has an average of seven to eight family members, but by the year 2030 that ratio is projected to be one to four.
According to Santagata, 23,000 Rhode Islanders have Alzheimer’s and there are 53,000 caregivers.
Finding community-based solutions is an aim of the study, said Gaugler.
He said he is still in the process of data gathering, and it’s too soon to say what works best given different situations. He is hopeful that the research will pave the way ADS Plus training and certification.
Already, however, Santagata is seeing results. Just having a book of “prescriptions” to deal with situations resulting from memory loss is reassuring.
“You’re not alone,” she tells family caregivers. “We have a whole book on strategies.”
She said it is important that caregivers hear that it is all right to take time for themselves and to take steps to reduce their stress and anxiety. An easy measure that can improve a good night’s sleep for a caregiver is to install a door alarm that will awake them should the patient get up while they’re sleeping.
“Because when you’re better rested you can give better care,” she said. She sees the center as being ADS Plus certified at some point.
“We have to learn to be open to change,” Santagata said.
“Saint Elizabeth,” she said of the community Cornerstone is a member of, “has always been a leader of innovation.”