Adult day programs are intrinsically valuable resources for people who care for loved ones with cognitive or physical challenges. But many adult day providers go beyond their regular lineup of services to offer additional support services for family caregivers.
Today, a group of researchers is working to quantify the benefits of robust, customized services that can further ease the minds and burdens of family caregivers. The study is also a vehicle for giving caregivers knowledge and skills to manage their day-to-day challenges.
The ADS Plus Study, conducted by Johns Hopkins University and the University of Minnesota, is a 5-year study involving over 40 adult day programs and 300 family caregivers.
LeadingAge spoke to the 2 principal investigators to learn more about how the study works, the interventions that it uses, and why boosting help for family caregivers is so important.
Laura Gitlin, Ph.D., is dean of Drexel University’s College of Nursing and Health Sciences, and an adjunct faculty member at the Johns Hopkins School of Nursing. Joseph Gaugler, Ph.D., is professor and Robert L. Kane endowed chair in long-term care and aging for the School of Public Health at the University of Minnesota.
LeadingAge: First, can you tell us about your research careers?
Joseph Gaugler: My doctorate is in human development and family studies, and my research broadly focuses on Alzheimer’s disease and long-term care. I’ve been interested in adult day services for a long time; my dissertation was on adult day programming.
Laura Gitlin: I am an applied research sociologist. I have a background in anthropology and sociology, and within that, social psychology. I’m very social/psychological and clinically oriented. My research interests have always been aligned with developing and testing ways to make life better for older adults and their family members, and I have a particular interest in dementia care.
LeadingAge: Where does the ADS Plus study stand right now?
Joseph Gaugler: We are still recruiting and enrolling participants and have implemented ADS Plus in the programs involved. We’re roughly halfway into the project. We are recruiting about 300 families across the U.S., and have 30 programs participating. Most recently we’ve opened up the project to try to identify an additional 10 programs. We hope to achieve our goal of 300 families within the next year and a half or so.
LeadingAge: What is the thinking behind expanding the number of programs?
Laura Gitlin: This is a pragmatic trial, a cluster randomized design. In this type of study design, the more sites participating, the more power the study gains to detect changes. Also, involving more sites involves greater generalizability. Finally, we want to assure that we enroll 300 caregivers. Increasing the number of participating sites helps to assure our ability to achieve 300 caregivers.
LeadingAge: How do you find the programs to participate?
LeadingAge: ADS Plus originated with Dr. Gitlin. Can you tell the story behind it?
Laura Gitlin: I can’t take full credit. When I was at Thomas Jefferson University, I headed up a center for applied research, and was the principal investigator on a number of NIH-funded caregiver trials. A director of adult day services in the region, Karen Reever, approached me with a great idea. She observed that her centers were not doing enough for family caregivers and had the idea of augmenting adult day services with systematic caregiver support that could be delivered by her staff.
From this observed need, Adult Day Service Plus evolved. We worked together to take a number of elements from my caregiver intervention studies and combine [them] with her staff knowledge and expertise. The data was exciting. We showed that caregivers who received ADS Plus had fewer depressive symptoms, greater efficacy, and less upset with behaviors. Also, caregivers receiving ADS Plus used adult day services for over 30 days more than caregivers in the control group (adult day services alone). Also, there was a reduction by 50% of nursing home placements in the ADS Plus group compared to the control group families.
Then Joe approached me and asked if I wanted to continue to test it. I thought that with his knowledge of and relationship with many adult day services nationally, and with my knowledge of the intervention and trial design, we would make a great partnership, and it indeed it has been an important collaboration.
LeadingAge: Each of the 300 participants will go through 4 interviews, whether they are in the control group or the intervention group. Will every person be asked the same questions, regardless of which group they are in?
Joseph Gaugler: Yes, the interviews are identical.
LeadingAge: What will the intervention group programs do that the controls won’t?
Laura Gitlin: If you’re a caregiver whose relative attends an adult day service assigned to the control group, then it’s “care as usual.”
Caregivers whose relatives attend a service assigned to the intervention group receive a year-long systematic support service. Staff at the intervention sites are trained in the ADS Plus protocol. The program provides caregivers with ongoing education, referrals and linkages, strategies for taking care of themselves, including stress reduction techniques, and specific skills to manage daily care challenges that caregivers identify.
In the first 2 sessions, staff trained in ADS Plus meet with the caregiver on-site at the adult day, who conducts a needs assessment and identifies what the caregiver considers most problematic to them. All subsequent strategies are tailored to address the particular concerns the caregivers seek to address.
This includes education. If caregivers do not understand that dementia is a progressive disease, then time is spent on that point. Caregivers often do not understand that behavioral symptoms are a consequence of the disease, that is, they are not intentional.
“The program provides caregivers with ongoing education, referrals and linkages, strategies for taking care of themselves, including stress reduction techniques, and specific skills to manage daily care challenges that caregivers identify.”
For each problem area identified, staff work with caregivers to problem-solve and brainstorm strategies, and then they receive what we call a “prescription,” which provides concrete strategies to address the concern. Staff practice with caregivers on how to use those strategies using demonstration and role plays. Common strategies, for example, are how to effectively communicate, how to simplify the home and make it safe, or how to simplify a particular activity to facilitate engagement of the person living with dementia.
The caregiver tries strategies at home, and then evaluates with staff on a subsequent visit. The first 3 months are intensive and can involve up to 8 visits. Afterwards, from 3-12 months, there are check-in calls, or check-in visits that are designed to reinforce strategy use or to determine if there are emerging new problem areas the caregiver would like to address.
As staff are trained in the approach, we are seeking to test whether embedding this approach in this service extends the benefits of adult day. Most staff chosen by the [adult day] directors to be trained in ADS Plus are care managers or social workers, but they can also be nurses or occupational therapists, or any health provider working in the center.
Joseph Gaugler: ADS Plus itself was evaluated in a smaller study, and it showed significant effects in improving caregiver well-being and reducing caregiver distress, but perhaps more importantly, reducing or preventing client institutionalization.
The elements of the ADS Plus intervention are derived from various previously tested interventions, including Laura Gitlin’s COPE program, and have been adopted and adapted in a number of other evidence-based dementia caregiver approaches, for example, Resources for Enhancing Alzheimer’s Caregiver Health (REACH).
LeadingAge: Regarding the 8 visits, where do they occur?
Laura Gitlin: All 8 sessions can occur on-site at the adult day site. In rare cases, if a caregiver is unable to come to the site, we do allow a home visit. However, ADS Plus is designed to be embedded in the adult day site. After the first 3 months, the caregiver may decide to remain in contact via telephone, email, or occasional face-to-face sessions.
LeadingAge: Are you giving participants a standardized assessment?
Laura Gitlin: Yes, caregivers participate in an assessment approach I designed with my teams and have used in other trials. We are in the process of publishing the assessment as well as the prescriptions, so they can be disseminated and used by others.
LeadingAge: Where do the prescriptions come from?
Laura Gitlin: They represent strategies we have developed in previous trials and which are found in the literature. We have also published these strategies. The strategies are derived from many years of effort and study, and involvement with thousands of families in our trials, plus whatever the literature has shown.
All caregivers are interviewed by telephone at baseline, then 3, 6, and 12 months by trained interviewers at Hopkins and University of Minnesota. Family caregivers, whether in control sites or the service sites, find the telephone interviews very beneficial. We ask them about their experiences, what they do every day, and their quality of life. They appreciate that, and they stay in the study.
LeadingAge: How do you hope to disseminate the results afterwards?
Joseph Gaugler: In addition to the traditional academic routes, we’d like to disseminate this through national advocacy organizations, like NADSA or LeadingAge. If proven successful, we probably would want to determine how to take the next step to implementing it widely. We also plan to explore how to disseminate ADS Plus from a policy standpoint. Are there ways to effectively advocate to make it a best practice, but also a universal practice?
LeadingAge: Have there been a lot of academic studies of adult day before this?
Joseph Gaugler: In the late 1970s and early 1980s, there were some seminal and fairly high-quality studies evaluating adult day programs themselves. At the time they could actually conduct randomized controlled evaluations—randomly assigning someone to get adult day programs or not.
As the programs evolved and became a core part of community-based long-term services and supports, it was no longer possible to really evaluate adult day services and answer the question of whether they were truly efficacious, at least when compared to the classic control group that does not receive adult day services. Several researchers recently have tried to adapt more novel designs to address that question.
The rationale for ADS Plus is that these programs exist, people use them, and they are likely beneficial at some level, but if we integrate a family care management support program that’s not only intensive and structured, but can also be delivered by adult day programs themselves, we believe it will add an additional family-centered benefit to adult day programs that heretofore have not been done consistently, and in so doing can really demonstrate effectiveness.
“We also plan to explore how to disseminate ADS Plus from a policy standpoint. Are there ways to effectively advocate to make it a best practice, but also a universal practice?”
LeadingAge: Here’s a more general question for both of you. What are the current strengths and weaknesses of adult day program practices right now, in your opinion?
Joseph Gaugler: It’s nearly impossible to answer because adult day programs are so diverse, not only across states but within states. Many have very different missions. That’s both a strength and weakness, I think. It’s a strength because adult day programs have been flexible enough to adapt to their given service environments, to address needs and identify client bases they can support, but the downside is you really can’t say with any consistency what an adult day program does.
Yes, in general, its goal is to provide some type of social engagement, and perhaps even therapeutic services to older persons or other people with disabilities who are living in the community or in some other residential environment. Another goal is to provide respite or relief to family caregivers, but how these programs do that varies extensively. Some are very progressive, and have found ways to identify evidence-based [strategies] to embed in their programs.
You have other programs that may categorize themselves as a certain type, but what that means and what they are actually doing are sometimes 2 different things.
Laura Gitlin: There is a lot of variability in service offerings. That may be based on community need, but also driven in large part by finances. I think they’re underfunded; that’s the major threat to adult day services.
More and more research is coming out to show how critical this service is. It serves a very important purpose in dementia care.
One issue we find is that families using adult day services may not know how best to use their time off if they are not working. Another issue is that families frequently state that they are grateful for adult day, but wish they had used such services earlier in their caregiving.
Somehow the messaging about the benefits of adult day has to be better, and it is a service that should be integrated into dementia care.