**Transcript of Cyberseminar**

**Patient Aligned Care Teams (PACT) Demonstration Labs**

**Engaging Caregivers in the Care of Veterans with Dementia and Diabetes**

**Presenters: Ann-Marie Rosland, MD, MS; Shahrzad Mavandadi, PhD**

**September 18, 2013**

*This is an unedited transcript of this session. As such, it may contain omissions or errors due to sound quality or misinterpretation. For clarification or verification of any points in the transcript, please refer to the audio version posted at www.hsrd.research.va.gov/cyberseminars/catalog-archive.cfm or contact**Ann-Marie.Rosland@va.gov**or**shahrzad.mavandadi@va.gov**.*

Moderator:And we are at the top of the hour, so at this point in time, I would like to introduce our speakers. Speaking first is Dr. Ann-Marie Rosland. She is a research investigator at Ann Arbor VA Center for Clinical Management Research, also an Assistant Professor in the Division of General Internal Medicine at the University of Michigan Medical Schools. And joining her, we have Dr. Shahrzad Mavandadi and she works for the Center for the Evaluation of PACT known as C-PACT in VISN 4. She is a research health scientist specialist and investigator also at MIRECC and that is for the Portland VA Medical—I am sorry—Pennsylvania VA Medical Center, and she is also an Adjunct Assistant Professor at Department of Psychiatry at the University of Pennsylvania. And Dr. Mavandadi, I do believe I butchered which medical center you are at, so feel free to correct me. 

Dr. Shahrzad Mavandadi:The Philadelphia VA, close enough.

Moderator:Philadelphia is inside Pennsylvania, huh? [Laughter] That counts, right? All right. So presenting first we do have Dr. Rosland and the slides are coming up now. So, Dr. Roseland, feel free to go up into full-screen mode and you see arrows on your right. And thank you, everyone, for joining us today.

Dr. Ann-Marie Rosland:Thanks, Molly. I am noticing that I believe we have that the last slide instead of the first slide. There we go. Great. Thank you. So thanks a lot, Molly. I am going to be talking today about Engaging Family Members in the Care of Veterans with Diabetes. And you will notice right away that my title says “family members” instead of caregivers and I will explain a little bit more about that today as we move on.

I do want to point out that I am speaking on behalf of our VISN 11 PACT Lab as well as a member of the Ann Arbor VA Center for Clinical Management Research. So our VISN 11 PACT Lab logo is there, PACT Research Inspiring Innovations & Self-Management; and a lot of the preliminary work that I will describe and also our pilot intervention is being done as part of that lab.

So today you will hear about two different ends of the caregiving spectrum. I will be talking about family involvement and support group people with chronic illness, people in chronic illnesses that require daily home management like diabetes or heart failure. Then Dr. Mavandadi will be talking about interventions for caregivers for patients with dementia.

So my agenda for today is to answer some questions about why we might engage family members to help, and I put in quotes here, “able bodied/minded” Veterans who are managing chronic illness. I will talk a little bit about what we know about roles families play in chronic illness care and what we know about how family members impact chronic illness healthcare and outcome.

And then we talk about research into what involved family members need and want to more effectively support chronically ill patients. I will talk about some new programs in the VA that are under development. And then at the end I will talk about lessons that we learned that I think are practical things that PACT Teams can use right now, even while these programs are being tested, to engage family members in the care of chronic illness.

So to start with, I am guessing and hoping that there are a variety of people out there both in the research areas and the clinical areas, but we wanted to find out who our audience was. So I am going to turn it over to the poll. What is your main professional role at the VA, or, if you are non-VA, you can answer this as well.

Moderator:Thank you very much. For our attendees, you should now be seeing the poll up on your screen. If you do not, please exit out of full screen mode and you will be able to see it. The question, as Dr. Rosland said, is What is your main professional role? Student, trainee, or fellow; Clinician; Researcher; Manager or policy-maker; or Other. And it looks like we have had quite a few answers coming in. And they have stopped, so at this point I am going to broadcast the results and Dr. Rosland, can you see them?

Dr. Ann-Marie Rosland:Not yet.

Moderator:Can you exit out of full screen mode?

Dr. Ann-Marie Rosland:There we go, great. So what I am seeing here are a few students and trainees, that is 12 percent; some 40 percent of our audience as a main role is as clinicians; 20 percent are researchers—this is a great distribution here; 12 percent are managers and policy-makers; and 24 percent other. So great. So I am going to – both of us are going to try to hit points that are relevant to both researchers and clinicians today. So I am glad to see everybody here.

So I want to revisit this idea of who is a caregiver. We often, when we think of caregivers, we think of them as those who are helping people who are physically frail or cognitively frail. And the main goal for programs for those caregivers, or one of the main goals, is to help relieve caregiver stress. And this is extremely important both for the patient that these people are caring for and for the caregivers themselves.

In our work, we focus on patients who are handling or are trying to handle the basics of their healthcare. And a family member/supporter gets involved with their healthcare on a daily or weekly basis, so pretty frequently. 

And I am going to stop here and say most people who work with caregivers and family will agree with, when we use the term family, we really mean anybody who helps the patient with their healthcare and is not paid to do it. So this could be a family member, a friend, a neighbor, you name it; but whoever they consider their family or their supporter is with whom we work. Often these supporters can be involved at home, can be a spouse or someone else they live with, but also increasingly from a distance, adult children, siblings that can get involved through the phone or computer from a distance.

And I bet many of the clinicians in the audience can picture or think of a patient that they have who brings someone with them to many of their appointments. This patient may also say when you call them on the phone to talk about medications, can you also talk to my spouse or can you also call my daughter and give her the same information, because they really know what is going on. 

So the main goal of our research is to really tap into and coordinate this existing research for patients so that all of us can effectively help the patients. And a secondary goal is to help caregivers and these supporters feel more capable and less stressed. Definitely many of these supporters that we are talking about are the same ones who are likely giving that more intensive and direct caregiving as the patients age.

I am going to talk about studies that were done by our VA team in past lab and also review some research that others have done, and I really wanted to focus on messages and not on small points of data. So I will tell you right here where some of this data comes from, and at the end there is a bibliography and some more data-focused slides if people are interested, though they will be optional. 

But we definitely have done a lot of review of the literature in this area, and then we have also conducted surveys of patients both on the university side and the VA side who have diabetes or heart failure and we have involved family members. We also conducted an Internet survey of the family supporters of adults with chronic illness, and these are family supporters across the country. So we made sure to get family supporter perspective.

Then the last bullet here, this PACE project, was Veterans at the Ann Arbor VA who have diabetes and were at high risk for diabetes complications. We both surveyed them and interviewed them and their family members about these questions, about how family members get involved in impact healthcare. And one thing that I am noticing is not on here that our PACT also did was survey and interview primary care clinicians about their experiences with family members and appointments and helping patients with care. So this is sources of a lot of the points that I am about to describe to you.

So. What we know about what families do for patients with chronic illness based on many studies that all come up with very similar results. So among adults who are functionally independent, between 50-75 percent of them have ongoing family member involvement in their medical management.

So what does that mean? That means getting family members involved with helping use and get their medications, get involved with helping them check their sugar and their blood pressures, and then also making day-to-day decisions about self-care and illness care. For instance, if sugars are high, if blood pressure is high, if someone with heart failure is dealing with shortness of breath, what to do about that. Family members get very involved with helping people prepare for appointments, what to bring to appointments, what questions to ask; involved with tracking clinician recommendations; what was the plan at the visit? And coordinating communication between doctors as well. 

And then very important is navigating the healthcare system, anything from how to make appointments, keep track of appointments, to figuring out what resources the VA had for people with diabetes or heart failure.

So these roles are things that if, done well, can really impact good control of chronic illness.

About half of what we know from the research is that half of the involved family members live outside the patients’ homes. So many times we think of a spouse, but definitely spouses fill this role about half the time, but the rest are adult children. In the VA we see sons even more. Daughters are usually involved more than sons, but in the VA sons more often than patients outside the VA, which was interesting to me. But also, again, siblings, friends, neighbors.

And one thing we noticed is that patients with low health literacy, multiple comorbidities in addition to their chronic illness, and comorbid depression, involve family in care more often. So again, the patients that we know are more vulnerable to poor outcomes involve their family members more often. So again this could be a resource that we could really use to help involve the patients.

So with patient care and family members who are involved in their care, they tell us that almost every time they talk to that family member, they talk about their health to some degree in the course of the conversation. And when we ask the family supporters, when we talk with the patients or here termed the care recipient, about their health, they mentioned that—and the most common thing was that they have bothersome symptoms and that second most common thing was that they should do more to stay to healthy like lose weight or exercise. 

But then we get up to some more interesting things. Patients talk about being concerned with medication side effects; having trouble paying for medications or healthcare—about 31 percent of family supporters talk about that with at least some kind of frequency, not just one time; not getting support they need to manage their health problems; and that they are confused about what the doctors and nurses are telling them.

So these are things, topics, that can impact healthcare that providers and teams would likely want to hear about. But we are not sure whether that information that the family supporters are hearing about is getting to the PACT team.

The next slide talks about a PACT-led study and our survey study where we asked Veterans of high-risk diabetes about how family members helped them get ready for their primary care appointments. So 61 percent of these Veterans with high-risk diabetes had a family member who regularly helped them prepare for their medical appointments. That was specifically referring to figuring out what information they wanted to bring with them, maybe sugar logs, maybe blood pressure logs; figuring out what questions or concerns that they wanted to address with their doc. 

And then 70 percent, an even higher – a little bit higher percent, regularly discussed the medical appointment with the family member afterwards, and I termed this debriefing. So you can imagine they come home and over half of these respondents who did not have a family member who came with them to their appointment. So they are coming home. They have they daily or weekly call with their family member or they talk to their spouse and they are saying, what did the doctor say? What did the nurse say? What are we supposed to do next, what was the plan?

In this little bullet down here, 27 percent of patients said they were not confident they were remembering what happened at the visit correctly or fully. So this is an area that we could improve communication with family members.

And what about family members impacting the healthcare visit itself. So study after study—and at the bottom there is a reference to a great review by Jennifer Wolff that reviewed lots of articles about family members accompany patients to appointments—study after study shows that about 50 percent of older adults regularly bring family members into their primary care appointment, into the exam room. And what roles did those family members play?

We know that they can give information, so facilitating information, in prompting the patient to speak. And this always makes me chuckle—prompting the provider to listen. Helping the patient remember what happened at home, explaining their symptoms more fully, providing information directly to the provider and clarifying or expanding on patient history. And then helping patient understand, explaining the physician’s instructions in lay language and in some cases, even translating to another language.

Family members also help with information seeking, so again helping patient remember what happened at the visit. They might be taking notes. It is a second pair of ears in either case. And the family members directly ask questions or request explanations of what the provider is saying.

And of course there is always that important emotional support and companionship of just someone being there with you in this doctor’s appointment. This can be a little bit intimidating.

And we do not have a lot of research on sort of hard outcomes on what happens when family members come into appointments, but one thing we do know that has been shown in several studies is that patients who are accompanied to their appointments have higher satisfaction with their care. 

And there are some rigorously examined and controlled multivariate models controlling for lots of other things that impact patient satisfaction. This finding is found consistently. So it is interesting to me. It might be due to the fact that they are experiencing better communication with their provider.

Some other family interactions with care teams we have found in our PACT-led studies that 25 percent of families prefer to talk on the phone with the clinical team. At least in the last year many of them talked regularly every time the doctor or nurse called.

About 5 percent are using email or secure messaging with the patient’s care team. And 33 percent of all Veterans who attended health classes or groups in the last year had family members come with them. And among those Veterans who have a family supporter involved in other parts of their care, it was literally 90 percent that brought that person with them to that diabetes class or a group visit or whatever that group situation was.

Generally we don’t have hard data on success with communication. We did ask patients what are their experiences with family participation in their visit. So when your family and friends talk to the primary care doctor, how often do you have the following experiences?

The positive ones that patients perceived, 78 percent said they were more motivated to follow the doctor’s advice. Seventy-seven percent, I understood the doctor’s advice better. It was helpful in explaining my health or my care to my family member. Forty-four percent said, we discussed a topic I had a hard time discussing on my own. So sometimes I think family members are facilitating these sensitive topics. And it was helpful in solving a disagreement between me and my family member.

And then the negative –12 percent was the highest endorsement of a negative, in fact. So 12 percent said it created a new disagreement between me and my family member, which was interesting that maybe patients and family members are trying to hash out afterwards how to follow a care plan, is one interpretation of that.

I felt my family member – we have people who feel that family members or doctors shared more information than they should, tried to get at the privacy issue. And very few people seem concerned about that, although a few were.

And then worried about that the doctor might trust me less because of something my friend or family member said, was the least chosen negative fact.

So while again we do not know about effects specifically about family members taking on specific roles, we do know in general that when patients say they have more support for their healthcare and more social support in general, that is definitely linked to patients having more success with self-management and better outcomes in chronic illness. The patients with more social support for healthcare have better healthy eating and exercise more; better glycemic control in diabetes; better blood pressure control; less heart failure symptoms and less hospitalizations for people who have heart failure. They have less subsequent cardiac events for people who have coronary disease; and over and over again, there are links for people with chronic illness to better overall health status and lower mortality rates. 

So. In summary of that piece, why don’t we involve family supporters in PACT? Well, supporters are already involved in medical self-care tasks and decision-making. Supporters already help patients navigate the healthcare system and communicate with clinical staff and communicate with non-VA clinicians as well. Supporters may be helping improve patient satisfaction and outcomes, especially if the supporters are engaged in care. And, of course, many of us know that the PACT goal is to engage everyone helping to care for patients in a team-based approach. 

So I think some of this data argues that the family supporters are playing an important care role and deserve to be brought in as a part of the care team.

So then, we turn our attention to what can PACT do. How can PACT teams engage family supporters to improve PACT care for patients with chronic illness, and what to family members need and want to more effectively support patients?

In our national survey of family supporters, many of the family were already involved with healthcare or willing to assist more with medications, tracking home testing like home sugars and blood pressures, tracking medical results and records, communicating at appointments.

And what do they feel limited by? That, I think is huge. So people felt like they just had some lack of information about patient’s health conditions: how do you care for diabetes; how do you care for heart failure?

What was striking to me is lack of information about the patient’s specific healthcare status. What is recommended for the patient to do? What are their medications? What are their latest lab tests? And that third bullet speaks to that, too. What is the healthcare provider recommending to my family member. And then is not sure what the best questions are to ask the patient to monitor how they are doing.

And definitely there is a growing body of research showing that when family get involved with healthcare, they are much more effective at helping people eat healthier and get exercise than they are with helping with medication adherence and self-monitoring, self-testing at home. So this highlights a need for family members who want to help with some of these more medical self-management tasks, maybe a little bit more assistance doing that.

And again, if they are VA, we interviewed patients and supporters and got very similar themes. Patients’ families were requesting the patients to get information and clear methods to get patient information in their questions to and from the PACT teamlet. 

Many of the family members brought up that they really wanted an after-visit summary about what happened with their family member, their patient, at the visit, and a clear way to follow up with questions.

And then an orientation for family members to who’s who in primary care and how do you reach them, again, if they were helping the patient to navigate to something they would want to know. Then access to information on how to handle diabetes and diabetes medical issues at home.

This is my last slide of insights before I tell you about some programs. But some other insights from the interviews that we gleaned: 

For families who work and live far away, then the patient should not be discounted, they should find creative ways to get involved. Some family members call the patient every day to hear, to monitor your sugars in the case of diabetes; what did the doctor say? They are using email. They are using computers. They are getting on My Healthy Vet. And sometimes when they need to, if the family member, if the patient is ill, they will have a way to deploy friends or in-town family members to help.

Patients and family feel more confident in family members helping when they feel like they have received some kind of training information about diabetes. 

And family members feel encouraged to come in to the VA or call the patient’s providers when they get personally familiar with the doctors and nurses. And they describe the VA as being especially an intimidating place to call in—the family members did—to call into or come to appointments. And so I think there are some things that we could do, some simple things to help them with that.

And if family members have to choose what visit to come to, say they were working and they can only come to some visits, they tend to prioritize visits related to procedures and specialists and not as much primary care. So I think that is an area that maybe is ripe for education of family members.

And over and over again, people felt like concerns about privacy were very rare. They said this person is already involved with my healthcare and my finances and this and that and why should I worry about what they hear my doctor say? So that was reassuring.

I think I skipped some of these insights for clinical staff and I know I want to get to Dr. Mavandadi’s talk. But definitely the clinical staff that we talked to, they are interested in getting supporters involved in their care. But their biggest concerns are about not being aware that the supporter is involved or what their role is and concern that supporters are not giving “proper advice or care.” So it is an education link.

These are VA pilot program to help integrate family supporters and chronic disease. Cureently we’re evaluating a program called CarePartners and then add on to that called CarePartners Clinic Connections. 

There are a couple other pilots or things in development around the VA that I know about. One is a Couples’ Telephone Intervention to help patients manage hyperlipidemia. That is a pilot that was completed at the VA Durham by Dr. Voils. They showed improved patient diet and physical activity and I believe that they are evaluating that in a larger trial now. 

And then there is a pilot in development at the VA Palo Alto for a Self-Management for Couples to help patients manage heart failure. 

If anyone listening knows of any other or similar programs, please type them for the end.

The CarePartners Program patients is built on a platform similar to what we are familiar with, with telehealth.  The patients got weekly automated calls that ask them about their—in the case diabetes or diabetes symptoms—their sugars; what are they on in medications. Their care partners or family members that sign up with them get automated weekly reports on what the patients are saying; and then both the patients and the care partners get from the automated system, they get the next steps.

For instance, the patient says they are going to run out of medications in two weeks. You might suggest that they refill it now.

The patient said they sugars have been high three days this week. Here are some suggested next steps.

This program has been piloted and it is in the midst of some larger trials for diabetes and depressions and heart failure, and has also been adapted for patients and family members managing cancer symptoms, post prostatectomy symptoms and then transition from communication to outpatient care. Those I think are very promising programs that are being evaluated in the setting of PACT.

The CarePartners Clinic Connections tries to improve the effective family support for patients’ with their medical self-management by integrating those actively involved family members directly into the PACT care team.

So the theory is that if we engage family supporters, the blue box on the left, by keeping them in the loop with patients’ personalized information and getting caregiver questions to the healthcare team, the patients will participate more both in their medical visits and also navigate VA resources more effectively.

So in this pilot for CarePartners Clinic Connections, we have recruited people with diabetes who are higher risk for complications: so either their A1C is high or their blood pressures are high, and have a supporter who is regularly involved with their healthcare. Either they are in their home or out of their home.

[Aside]  Okay, so. We are starting with Veterans with high-risk diabetes. They have an initial visit with a health educator, who at this point is a pharmacy student, but the healthcare educator will have a design that is able to be implemented by a past nurse or care manager. At the initial visit the supporter gets information about who is on the patient’s PACT teamlet and how to contact them about the patient’s most recent diabetes status and medications they are prescribed with their last lab values work, what the last plan was that they made with their provider. And then we also record what the family supporter is doing with the patient to share with the Care team.

Then before their primary care appointment, they get a phone call and they are guided through preparation for their appointment. We help them document questions or concerns they have with their doctor or their nurse, both supporter questions and concerns and those of the patient. Then plan, again, what other information they are going to bring. And then we do send an after-visit summary to the patient but also directly to the supporter, so again keeping them in the loop of what specifically is happening with the patient.

And then with this pilot we on top of that in the green added in those CarePartner automated calls. I am hoping that this helps supporters help patients lower their diabetes risk.

So in this pilot, we have recruited 20 patient/supporter pairs and they are just now starting to finish their intervention period. So I will have to update you guys in the future on results.

So finally, lessons for PACT teams from our work. So while we are waiting for results from all the exciting pilots, what can clinicians and PACT teams do now that is likely to be useful based on our preliminary work?

Ask patients if they have an involved family member. Again, especially patients that you perceive as having complex issues, at high risk, struggling with their care, ask them if they have an involved family member; and if they do, ask what aspects of medical care is that person involved in. You really need to just document in your notes, not on a fancy form, but in your notes, 1) this patient gave me permission to contact this so-and-so at this given number about their care. And we can talk about that more in the Q&A when people have questions. But that should cover you, talking to that family member.

If you have a chance, introduce the PACT team to the family member. We are working on doing that with patients, but family members as well.

Give diabetes-specific information to involved family members. Again, any information you are giving to patients, how to titrate insulin, what to do with their sugars, how to take their medications, try to give that to any and all family members as well. And express your confidence that they are qualified to help and use this information you are giving them.

Give patient-specific information to involved family members, again with patient’s permission. If you are sharing a key medication change or a result with a patient, offer to share it with involved family members. Encourage family to come primary care appointments, especially for patients who are struggling. You can express your feeling that it is important that coming to an appointment about a colonoscopy or another specialty appointment.

Encourage family to come with their questions and concerns for you. 

And a sort of a more dense check is, encourage productive communication skills among family members. 

So some of the things that we were being trained in, in the past like open-ended listening, supporting patient choices and their personal motivation and helping patients set goals, family members could actually do that as well.

So. I will wrap up my talk here. I will hand it over to Dr. Mavandadi, but I will remain on the line and available for questions.

Dr. Shahrzad Mavandadi:It would help if I take my phone off mute. [Laughter] Hi. Thank you, first, Molly, for organizing this meeting, and also to Dr. Rosland for a great first presentation. Hopefully a lot of the issues that were brought up will directly relate to this next talk. 

And today I am going to talk about specifically engaging Caregivers and the Care of Veterans with Dementia. First I am going to provide a brief summary and present some preliminary results from the pilot Clinical Innovation Project that we are doing at the Philadelphia VA. The project was funded by the VISN 4 Center for the Evaluation PACT, to whom we are quite grateful for their continued support over the last couple of years.

Before I begin, I just want to get a sense of the audience’s experience with clinical research projects. So if you could respond to one of these: if you have not done any clinical research; if you have collaborated on research; if you have conducted research yourself; you have applied for funding; or you have led a funded clinical research grant. I realize these are not mutually exclusive. So if you can just pick one of the most relevant, that would be great.

Moderator:Thank you very much, Dr. Mavandadi. We do have some results streaming in for our attendees. If you cannot see the interactive poll page, please exit out of full screen, which is located in the upper right-hand corner and then you should see a gray screen where you can submit your response. It does look like we have had just about 50 percent response rate, but answers are still streaming in, so we will give people just a few more moments.

Also, Dr. Mavandadi, when you want to see the results, you will also have to click out of full screen mode.

Dr. Shahrzad Mavandadi:Mm hm.

Moderator:And those results are up at this time.

Dr. Shahrzad Mavandadi:Okay, great. And it looks like the majority have some level of experience with clinical research, which is great, because the audience will know some of the challenges and how this is involved in this kind of work, so terrific. Thank you. And I actually do not see the full screen icon anymore. 

Moderator:Oh. I see, because I need to exit out of full screen! [Laughter] Now you can go back.

Dr. Shahrzad Mavandadi:Terrific. Thank you. So before I talk about the intervention itself, I thought I would provide a really brief context for it and provide some statistics on dementia in general in the US. And by dementia I am referring to an umbrella term that is for a variety of conditions and diseases very typically progressive in nature and are marked by changes in memory, behavior, judgment, mood and personality. There are many forms of dementia, but the most common is Alzheimer's, which accounts for 60-80 percent of all dementia cases, so we have the most statistics for that and that is what I will be presenting here.

One in eight older Americans has Alzheimer's Disease and over the age of 85 actually one in three older adults has Alzheimer's Disease. And within the VA alone there are an estimated half million Veterans with dementia. Alzheimer's is the sixth-leading cause of death and payments for Alzheimer's care alone are estimated at $200 billion. Given the aging of the US population, the annual incidence of dementia is expected to double by the year 2015, so obviously this is going to lead to significant financial social and personal consequences that will felt as the population ages. 

So who exactly is caring for these individuals? We have those paid and unpaid caregivers. Paid caregivers include direct care workers and professionals like nurse aides, home health and personal aides, et cetera. But fewer than 10 percent of individuals receive all of their care from these paid caregivers. This is obviously due to a variety of factors like cost, preference, shortage of workers, insufficient training, high turnover which is actually quite common in these professions.

The majority of care, in fact an estimated 80 percent of care, is provided at home by family members. Given the various demands and polls of caregivers include frequent interruptions to daily routines, loss of sleep, having to deal with difficult behaviors and just the general loss of the significant other and the social isolation and loneliness that may result. Caregivers are at increased risk for social, psychological and physical problems. So it is not really surprising that they have been referred to in the literature as hidden patients.

This is important not only, obviously, because we care about caregiver health and wellbeing, but also because the caregiving role is associated with average outcomes for care recipients as well. So things like caregiver burden and stress or physical functioning and difficulty coping with behavioral symptoms are all associated with things like for example, early nursing home placement.

In recognizing the importance of caregivers, a variety of programs and interventions were developed and evaluated, and this link right here is for a really HSR&D Event Space and Business Report that does a really nice job summarizing the dementia literature. And it appears that programs focused on caregiver support and psychoeducation have a particularly positive impact on caregiver and care recipient outcomes.

But the best evidence seems to be for multi-component programs that are individually tailored to each caregiver and patient’s needs. So these include programs that incorporate multiple intervention strategies through psychoeducation and support and behavior management training, for example. Again they take into account specific needs for each individual.

Within this umbrella of multicomponent programs, patient-centered collaborative programs seem to yield especially promising results. These are very PACT-like, so they are programs that build upon the fact that the majority of individuals with dementia receive their care from their primary care providers. And so interventions here involve disease management that is coordinated and delivered by an interdisciplinary team, like a teamlet, comprised of care managers, primary care providers and caregivers. There are some really great examples of these partners in dementia care. Dr. Mark Kunik’s group at the REACH I and II programs and the Axis program out of East LA have all been shown to be related to positive caregiver and care recipient outcomes.

So the purposes of our pilot project here were to examine the impact and feasibility of a brief telephone-based dementia care management program that again involved two main components. The first was cooperative care management and the second was a manual driven psychoeducation support and skills training program.

It supports the PACT initiative in a variety of ways. Again, patient and family centers are where all intervention activities were adopted and tailored to individual patients and caregivers. It was coordinated by care managers in collaboration with the primary care provider and other providers including specialty care providers, social workers. We hoped that we were improving access and engagement by virtue of the fact that it was purely telephone-based. We were hoping that we were avoiding barriers such as caregivers not being able to come in for appointments and services due to a variety of factors. 

And we will see when we go through the caregiver demographics if a lot of these caregivers for dementia patients in the VA are older themselves and are experiencing a lot of chronic conditions. So they may not feel like they may be able to come to the VA. We are hopefully avoiding problems with distance and lack of transportation. And also again there is a check for [inaud.] dementia patients. So a lot of them have difficulty finding someone to look after the patient while they come in for appointments and services. And also, it is allowing us to reach caregivers in rural areas.

So, in short, we really hope that we are bring some level of specialty dementia care to the patients and family in the comfort of their own home.

The specific aims of the project include to examine what was relative to usual care; better  interventions associated with improved caregiver and patient outcomes; other participants enrolled in the program or intervention have greater perceived access to resources and services; and in general just evaluating whether the program is feasible and acceptable.

The design includes a longitudinal, randomized design with assessments at baseline, three and six months. Our ultimate target is 80 participants, 40 in each arm. To date we have 75 caregivers enrolled, so we are almost there. The study sample includes caregivers of community-dwelling Veterans with a dementia diagnosis—and there is quite a bit of information cut off here, I apologize for that—and/or on a cholinesterase inhibitor or memantine, who later on-screened positive for dementia per caregiver report on the ADH, which is a caregiver-administered dementia screen.

Recruitment strategies include direct provider referral and the Behavioral Health Laboratory, which is our site for primary care mental health integration program, and also CPRS. So we ask our pharmacy to run queries to identify patients who are prescribed a cholinesterase inhibitor or memantine, and then we run those lists by the providers to see whether they feel that they would be appropriate for us to contact.

In terms of what the different arms get, everyone regardless of intervention or usual care receives the assessments that they find three and six months and everyone else oversees printed brochures and materials regarding caregiving, and these are just brochures that are available through the VA. 

In addition, participants randomized to the intervention arm received care management, so this includes monitoring symptoms, medication and service use. So our care management contacts, caregivers, at least three to four times over the course of three months; and that is what really makes us somewhat different than other programs. It is really designed to be delivered within a three-month timespan.

During these calls the care manager evaluates and tracks the symptoms, safety issues, distress. She also assists in service and resource connection both within the VA and outside the VA. She mails educational materials, contact information, and she also consults the primary care provider, other specialists, other departments of rehab medicine, prosthetics, social work, et cetera.

And then the second main component is the Telehealth Education Program, which deserves its own slide. So this is the caregiver support group program which was originally developed to be administered with groups of caregivers over the phone; and it was actually successful in doing so. It was developed at the VISN2 Center for Integrated Healthcare by Doctors Laura Wray and Molly Shulan, so if anyone is interested, there is a reference to their original paper.

The program is based on the Stress & Coping model. Essentially the content was designed to address major areas that caregivers see as problematic or stressful and then to really coach caregivers to develop problem-solving, problem-focused and emotion-focused coping strategies in response to those stressors. So the purpose of this project, we adapted the group manuals both for the care manager and the caregiver to be used with individual caregivers.

Some of the key components included: during the given call there are three main things that go on. First, education and information about perceived process, management and resources. Again, there is coaching on communication, problem-solving and coping strategies to help caregivers deal with things like communication patterns and behavioral symptoms that typically change over the course of dementia and progressively get worse. I have offered to just provide assistance and conditional support to the caregiver.

So caregivers can select up to 10 modules. In our program we required that two of these modules are mandatory, so those include stages of dementia and coping skills and problem solving. Then working with the care manager, the caregiver decides which of the additional eight modules they are interested in participating in. These include behavioral management, communications skills, planning for the future.

And this link down here at the bottom of the screen is to the SharePoint site that Dr. Laura Wray has actually very graciously put together. So if anyone is interested in obtaining copies of the group material, for the group manuals for caregivers and care managers, you can go on that SharePoint site. If you cannot access that for some reason, she said she would be happy to send them via email.

So in terms of assessments, we ask these caregivers a lot of questions and they are very sweet and kind and responsive, all of them. Actually we have pretty low attritions rates in this study, which is exciting.

So caregiver-related factors include sociodemographics, general mental and physical functioning, social participation. We also for a Zarit Burden Interview, the Lawton Caregiver Appraisal Scales, and these include scales for looking at caregiving mastery, impacts, satisfaction. 

And we also ask the Pearlin Caregiving and Stress Process Scales. These parallel the Zarit and the Lawton Scales, but they also include things like economic strain as a result of the caregiving role and relational deprivation and conflict in the family that occurs as a result of caregiving.

So we also do a Needs Assessment and a Desire to Institutionalize Scale, which is a six-item measure, and we look at depressive symptoms through the PHQ-9.

Then largely through caregiver report we collect care recipient-related data on ADLs/IADLs, and we also ask the Revised Memory and Behavior Problems Checklist, and then there are Psychiatric Inventory Questionnaire which not only gives us a sense of symptom frequency and severity but also caregiver distress and reactions to those symptoms.

And then finally, the care manager completes a tracking lot or sheet after every contact where she summarizes the types of things that she did during each call. And those things are many and we hope to use those for process evaluation and program evaluation purposes.

So for caregiver background characteristics, I will just briefly go over just in the interests of time. So our caregivers are an average of 70 years old, which is a bit older compared to national demographics for caregivers. The majority are female, non-Hispanic, white, spouses and are providing 24 hours of care per day. And a little over half have been caregivers for three years or more. There are some additional demographics.

The care recipient characteristics—and again, this is just a subset of the full sample. These are the people who we have data entered and collected for. Or collected and entered for.

The mean age of our care recipients is 79 years. All but one are male. The majority are non-Hispanic white and again they are experiencing a number of comorbid medical conditions, ADL and IADL deficits and symptoms related to dementia.

When we look at baseline caregiver reported needs, and this is irrespective of randomization groups this is for everyone at baseline. If you look at this last column, 81 percent are reporting at least one need in one of these categories at baseline, and these include things like home repairs and modifications. Help with assistive devices, ramps, grab bars, financial/legal issues, community services—so information about housing, transportation, home health care, respite and information or help/advice about how to manage their free time and their social activities fill a variety of needs are being reported.

Briefly looking at participation in care management and TEP: this is based on just a preliminary evaluation of the care manager tracking log. Engagement thus far: the average number of contacts is five over the three month period and the average number of TEP modules selected is three. 

As I mentioned in review during the methods sections, the care management engages in a variety of activities and addresses a variety of needs and concerns. In addition to the contents in the TEP modules, she also engages in a lot of coaching and practice in various non-pharmacologic strategies to reduce stress and strain.

So for example, pleasurable event scheduling, cognitive restructuring, problem solving exercise, relaxation techniques. Again, these things are all designed to help reduce stress and strain.

So looking at some of the actual assessment data, and again these are—I am sorry to keep repeating this—but these are very preliminary results and these models admittedly do not control for a lot of factors that they should control for. But they do control for baseline differences in the variable interests. But it would probably be interesting to show these as preliminary findings. So this first slide of the Neuropsychiatric Inventory Indices, so on the left-hand we have neuropsychiatric symptoms severity and on the right hand we have caregiver distress due to the symptoms. And while there does not appear to be a significant difference because p=0.21 between groups over time and symptom severity, but it does look like the intervention group is showing a little bit more of a reduction. Caregiver distress due to symptoms does appear to be changing and it is a trend of p=0.10 where the intervention group is showing greater reductions in distress due to symptoms at three and six months relative to baseline compared to the usual care arm. 

And these are the results of the mixed effects models. So they take everyone into account or intend to treat analyses.

A similar pattern of findings emerges when we look at the Revised Memory Behavior Problem Checklist. This measure in particular looks at memory symptoms, depressive symptoms and disruptive behavior associated with dementia and cognitive impairment.

So similar to the NPI indices, when we look on the left, on the Total Symptom Frequency, there does not seem to be a difference between groups. And I am sorry; there is no legend here. The orange line is the intervention group. The yellow line is the usual care. But when we look at caregiver distress or reaction in response to symptoms, this actually almost approaches statistical significance at 0.06. So here the intervention group, again in orange, relative to baseline, seems to be showing less distress at three months and six months when compared to the usual tear arm. 

This is especially promising given that again, one of the main goals really is to help caregivers cope in emotion-focused ways and to reduce their distress and reaction to the symptoms.

This is really quickly some additional outcomes again based on longitudinal models about the usual caregiver in the intervention arm also report great increases in caregiving mastery. And I know we are being a little liberal with the p value here, but when you look at the actual mean differences over time, they are quite notable. And again, master is just one’s competency in being able to take care of the Veteran and address their needs and symptoms.

Management of meaning is larger increases in the interventional to the usual care arm as well, so this is when the Pearlin Subskills – this is a significant difference over time. Again, this is essentially cognitive coping and emotion-focused coping.

And in overall mental functioning as measured by the SF12 MCS. This also approaches significance as p=0.08 and those in the intervention group are showing increases in this over time to the usual care.

As for the desire to institutionalize, there is no significant differences between groups. What is interesting is when we look at the percentage of caregivers at baseline who are reporting no desire to institutionalize and then look at them again at six months. A smaller percentage, I believe it is 12 percent, in the intervention arm, relative to 30 percent in the usual care arm, are reporting a desire to institutionalize and follow up.

So finally for a summary and implications. A telephone-based caregiver outreach and support program, a brief telephone-based intervention, does seem to be acceptable and feasible.

Caregivers of older Veterans with dementia are reporting unmet needs and experiencing a burden and distress that should be addressed in some kind of systematic way.

Very preliminary longitudinal trends suggest that caregivers’ distress may decrease over time upon receipt of care management services such as those provided in this program.

The findings highlight the importance of increasing caregiver access to patient- and caregiver-centered programs and also developing and designing more manuals and brief interventions and tools that can be easily disseminated and implemented within PACTs.

So with that, I would like to thank again the Center for the Evaluation of PACT, the Care Managers who have worked on this project and the Project Coordinators. They have done such an amazing job. And my co-investigators on the project, and of course all the Veterans and caregivers and providers who have worked with us over the years. I need to thank them as well. And with that, we want to open it up to questions.

Moderator:Excellent. Thank you both very much. I am – I noticed a lot of our participants joined us after the top of the hour, so I want you to see the Q&A box in the upper right-hand corner of your screen. If you do not see that, click out of full-screen mode and the Q&A box should pop up. Go ahead and type your question or comment in the bottom box and press send and we will get to it in the order that they were received. We do have a few people that have written in looking for a copy of these handouts. You received a reminder email this morning that does have three links and one of them goes directly to these handouts, so please refer to that. And a question that has come in—this is for Dr. Mavandadi: is this program available at any VA or still a pilot program at your VA?

Dr. Shahrzad Mavandadi:This essentially based project is currently taking place at our VA and also at the Buffalo VA. In terms of the materials, though, they are available for use at any VA, so anyone who wants to use the manuals, both the Care Manager and Care Giver Manuals now if they are interested. Of course, training for the program and other things, we still need to develop for dissemination.

Moderator:Thank you. The next question we have: is it all right to use these five to share with our colleagues at our individual VAs?

Dr. Shahrzad Mavandadi:Sure. Yeah. I don’t know about Ann-Marie,  that it would be fine with me.

Dr. Ann-Marie Rosland:You’re welcome.

Moderator:Excellent, thank you. And just so you all know, we did record this and we will post it on our online archive catalog so you can get the video and the handouts and the transcript there and pass it along to any colleagues who were not able to join today. It looks like we have about five minutes left, but there are no more pending questions. If anybody has a question or comment, now would be the time to type it in. And while we are waiting for those remaining ones, I would like to give each of you an opportunity to just make some concluding comments, and we will go ahead and start with you, Dr. Rosland.

[cross talk]

Dr. Ann-Marie Rosland:I have lots of things to say. There are a lot of things I could say. But I think that after hearing Dr. Mavandadi’s talk, that there are a lot of exciting pilot work going on all across the VA in the full spectrum involving family members and care, involving caregivers and care. And addressing caregiver stress, both on the research side and on the patient care side. And I will but in a plug: there is a national VA Caregiving Research Special Interest Group that meets by phone call once every other month, once every two months. Usually the format is informal. You can ask questions about issues we are having with programs or research and then usually someone is designated to give a very informal presentation about a project they are working on. So if anyone is interested in that group and sort of checking it out, I can give you the contact information for the person who runs it. Just to say that there is a certain groups across the VA that is really tackling this issue.

Dr. Shahrzad Mavandadi:And I second that. [Laughter]

Moderator:Okay. Well, we do have some more questions that have come in. A couple people have written in saying, Thanks so much, this is very helpful; we cannot wait until it gets rolled out nationwide. And let us see. When a patient lives alone with new signs or diagnosis of dementia and is not interested in accepting help, what steps can be taken to help the patient regarding safety issues for him or her?

Dr. Ann-Marie Rosland:That is an excellent question. If they live alone. I mean – I think it is important – I mean if an evaluation was made that there is to be concern, clearly the Veteran is either themselves able to respond to the assessment, in which case there are a variety of tips for safety that are available. There are those available through the VA for that. And also I mean it is always useful to just ask the Veteran, even though they may live alone, they still have a network oftentimes of people who can help them and assist them and to ask if those people can be contacted. There is definitely another venue or avenue that one can take.

Moderator:Thank you for that reply. We do have a couple more questions; however, I just want to mention that I accidentally just did delete someone’s question. I severely apologize for that. So while I am asking this next one, please do write it back in. And this question: is there an expected timeline that this pilot will be used at all the VAs?

Dr. Shahrzad Mavandadi:I assuming it is for me. There is not a timeline as of now. Again, we are still in the process of collecting data. So no, not yet.

Moderator:Thank you for that reply. And it looks like the question that I accidentally just deleted was just for a copy of the handouts. So we should be good there. So that is the final question that came in. I just want to thank all of our attendees who joined us today, and I want to let you know that when I end the meeting you are going to be redirected to a feedback survey. Please do answer those really brief five or six questions. It is your opinion that guides where we go with the program and what presentation topics we focus on. And with that, I definitely want to thank Dr. Rosland and Mavandadi for presenting for us today. Your expertise is very much appreciated and it looks like our audience was very engaged. So thank you to everyone for joining us today. This does conclude today’s HSR&D PACT CyberSeminar.

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