REACHING Out to Alzheimer Families
Robin Weidberg, daughter of Navy Veteran Raymond Boop, serves him a classic southern lunch of fried chicken and sweet tea.
“You deserve a break today,” goes the famous advertising slogan.
Researchers and clinicians may not call it a “break” — an “intervention” would be the more likely term — but that’s exactly what teams at VA sites nationwide are now preparing to deliver to thousands of Americans who have one of the most stressful and demanding jobs around.
The program is called REACH, short for Resources for Enhancing Alzheimer’s Caregiver Health. It’s now being implemented at VA sites nationwide, with the goal of providing much-needed support for a beleaguered caregiver population.
Reducing Caregiver Risk
About 80 percent of care for those with dementia is provided by family caregivers, but these devoted family members often lack the skills to manage troubling patient behaviors and their own stress. As a result, they can be at risk for depression, anxiety and other health problems. And their aging loved ones with Alzheimer’s are less likely to be able to remain at home.
The REACH effort began with two studies sponsored by the National Institute on aging and National Institute of Nursing Research and conducted by investigators with VA and several universities. The researchers tested a six-month intervention designed to ease caregiver stress. It included 12 individual sessions in the home and by telephone, complemented by 5 telephone support-group sessions. The focus is on education, support and skills-building.
In the REACH model, trained “interventionists” teach family caregivers how to reduce stress, solve problems and manage difficult behaviors by their family member. Role-playing and other strategies are used to develop coping skills. A caregiver notebook, written in very easy-to-understand language, covers dozens of topics, ranging from the physical care of the person with Alzheimer’s to emotional and communication issues.
“REACH VA is designed for caregivers who are highly stressed,” says Jennifer Martindale-Adams, EdD, an investigator with the Memphis VA Medical Center and the Department of Preventive Medicine at the University of Tennessee Health Science Center.
“It is easy for staff to use because it is structured, with a protocol and scripts. It meets the needs of caregivers and Veterans because it is targeted to their individual concerns through a risk appraisal.”
The material is tailored to family members based on assessments of where they need the most help. For example, some caregivers might simply need more knowledge about available resources or Alzheimer’s symptoms, while others need to learn how to reframe their emotional responses.
“Risk priority assessment is the most innovative part of the program,” says Linda O. Nichols, PhD, a health educator and lead investigator for REACH. “Targeting the intervention to the caregiver’s needs and not just to the behavior problems of the patient helps to individualize the program and to focus on high-risk areas first.” She is also with the Memphis VA and the University of Tennessee.
Family members often become caregivers to disabled or ailing Veterans.
VA Acts on Positive Study Findings
Findings from the REACH studies showed improvements across many areas. Caregivers reported less “burden” and depression, and improved emotional well-being overall. They also reported gains in the areas of self-care and healthy behaviors, social support, and management of problem behaviors on the part of their loved ones with Alzheimer’s disease. Plus, they gained an hour a day of time that was not consumed with caregiving duties.
“The intervention provided that most scarce of caregiver commodities, time,” wrote Nichols and coauthors in a 2008 journal report.
“We think the biggest outcome was in the increase in perceived free time of one hour,” adds MartindaleAdams. “The extra non-caregiving time could allow the caregivers to do what they wanted.”
Moreover, the extra soul-nourishing hour came relatively cheap — at a cost of about $5 per day for each caregiver — according to an analysis by the Memphis group. “We showed that you can do behavioral interventions,” says Martindale-Adams. “There are a lot of people who have said they won’t work due to cost.”
Based on these positive results, in 2007 VA began a “translation project” called REACH VA, designed to parlay REACH into an ongoing program to help caregivers of Veterans with Alzheimer’s. The first step was showing how the program could work on a wide scale in VA. The six-month intervention was delivered at 24 sites in 15 states through VA’s Home Based Primary Care programs. The Memphis VA Medical Center coordinated the effort, providing training to the clinical sites, certification of staff and evaluation of the results.
By and large, the 127 caregivers who took part in REACH VA — most of them spouses of Veterans -reported improvements similar to those seen in the earlier research. Significantly, 96 percent said the intervention program should be provided by VA to all caregivers. The full results were reported earlier this year in the Archives of Internal Medicine.
REACH "interventionists" teach family caregivers how to handle the stress and work of caring for their family member.
“Most rewarding aspect of my work with VA”
Saudia Major, PhD, a clinical psychologist with the VA Ann Arbor Healthcare System, has been involved with REACH VA since late 2008.
“It’s been one of the most rewarding aspects of my work here,” she says. “When I joined the Ann Arbor VA and began making home visits, I experienced a frequent sense of sadness when I observed the caregivers. These people, often times spouses of the Veterans, appeared depressed, teary, isolated, and usually in poor physical condition due to self-neglect. I found that some caregivers would attempt to monopolize my time during home visits, understandably due to lack of support, and I would have to spend a good bit of time redirecting them and my focus to the Veteran.”
The results from REACH, she says, can often be dramatic.
“It gives caregivers a sense of validation, helps them realize they are not alone, and that their needs have been heard. With this comes an increase in self-esteem and self-confidence. We see an improvement in their caregiving abilities and skills and then we observe declines in depression and stress. I’ve had a couple of caregivers tell me that that they felt that I, and the REACH VA program, saved their lives.”
Shelby Nemeth, one of the caregivers with whom Major has worked, says she feels “blessed” by the REACH program.
Her husband of 53 years, 85-year-old Lawrence, a Purple Heart Veteran of the Battle of the Bulge, has had Alzheimer’s since 2003. She has looked after him around the clock ever since.
“He has his good days and his bad days,” she says. “No, he doesn’t recognize me. But, he’s comfortable.”
When Major and her team offered to enroll Nemeth in REACH and some related respite services, at first she thought she would feel guilty about not being there all the time for her husband. “Then I realized that my being healthy, letting go of some of that stress, was not only good for me, but it was just what Lawrence needed, for me to be strong enough to take care of him.”
For Nemeth, preserving her own health was no small task: a few years ago, she suffered a heart attack and underwent a quadruple bypass. She relied on her and Lawrence’s children to help care for him while she recovered.
“I am so grateful to the VA for the REACH program,” says Nemeth. “I would absolutely recommend it to other Veteran families.”
Now, REACH VA is being rolled out on a national basis through VA’s Home-Based Primary Care programs. Training has started on a wide scale this year and will continue over the next few years.
“The Home-Based Primary Care staff have been amazing in the translation,” notes Nichols. “They do the work because they see a need.”
The needs of other Veterans and their caregivers — outside the Alzheimer’s community — will be addressed as REACH VA is modified for spinal cord injury and traumatic brain injury.
Says Nichols, “We have had wonderful support from VA in moving REACH from research to a program that will be available to caregivers around the country.”