Taking Care of the Caregivers (Episode 21)

April 13, 2018

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Darcy Grabenstein: Hello from SmartLinx Solutions! In today's podcast we'll talk about Care2Caregivers, a helpline for caregivers for people with dementia and Alzheimer's disease, operated by Rutgers University Behavioral Healthcare. Joining us is Mary Catherine Lundquist, Coordinator of the Comprehensive Services on Aging (COPSA) Institute for Alzheimer's Disease and Related Disorders at Rutgers Health, Rutgers University. Welcome, Mary Catherine.

Mary Catherine Lundquist: Thank you, Darcy, so happy to be here.

DG: Good to have you. COPSA is a statewide program in New Jersey that also includes a dementia clinic and a resource center that provides education, information, and support to the families and caregivers of people with dementia. Institute staff train and provide consultation to geriatric professionals throughout the state. Mary Catherine, before we go into detail about Care2Caregivers, could you tell me a little bit more about the training programs that COPSA provides for hospitals, for inpatient psychiatric units, nursing homes, assisted living facilities, day programs, and other healthcare organizations, as well as the training provided to social workers, nurses, psychologists, counsellors, and physicians?

MCL: Sure, Darcy. We have a wealth of programs that we can go and offer to various mental health professionals in this community on topics related to aging, to mental health, to mental illness, and to dementia as well. So, some topics might include assessing older adults; how to avoid crisis and negotiate conflict; depression, delirium, and dementia, what's the difference; depression and suicide in older adults; hoarding; older adults in crisis; senior bullying; cultural sensitivity programming. We have a set of programs that we can offer, but we really work with each organization. So if there's an organization that the professionals are struggling with a certain area of care that they're providing to seniors and the people who care for seniors, we can really design kind of a specific program that's going to help them meet their needs.

DG: Wow, you do offer a lot. I have to laugh, you did say hoarding, didn't you?

MCL: Yes, I did.

DG: Because I keep joking to my husband that I'm going to get an intervention for him.

MCL: Well, that's a hot topic now, especially with the reality show on TV.

DG: Right! So Care2Caregivers, they give assistance to both professionals caring for those with memory issues as well as non-professionals. But today we're going to focus on the services the helpline provides to professionals. So first off, Mary Catherine, how did Care2Caregivers get its start?

MCL: Well we started about three and a half years ago, and our institute here, the COPSA Institute for Alzheimer's Disease and Related Disorders, has been around since 1975. So that's for about 42, almost 43 years here. And it started from a grassroots movement from caregivers themselves who were caring for their loved ones with memory loss, and they demanded that the state provide some services to better support them. So we are embedded within this program. We have a diagnostic clinic here where people can come and get diagnosed and then also come back to have their medications managed. We have the training programs where we send trainers out to train professionals in different organizations. But the state felt that we could also use a central hotline, where anyone can call who is caring for someone who has memory loss or issues related to aging and get assistance on the phone as well. So three and a half years ago, and they say it as a way to kind of extend our reach to reach as many people as possible.

DG: So the hotline is not just for anyone caring for someone with memory loss, it's for any aging issues?

MCL: Well oftentimes it's hard to tease out what's going on for the elderly person, and the majority of people who do have memory loss are not diagnosed. They could be living with a family member or maybe they're living independently, maybe they're going to their doctor's office. And sometimes it's kind of hard for medical professionals and even mental health professionals to pick it up, because the person kind of pulls themselves together and they're a bit more preserved when they go for that medical appointment. So you know, oftentimes it takes years for the behaviors and the deficits to kind of become more evident before the person can get help. So yes, there's depression, when as we age we start to deal with all types of challenges, including our own physical decline, we're losing family members, elderly people often lose their spouses, they sometimes lose a lot of their friends, their siblings, of course their parents are gone, and some of them are even burying their own children. So they oftentimes do struggle with depression and social isolation. So sometimes it's kind of all mixed together.

DG: Sure. What I think makes Care2Caregivers unique is that it's staffed by peer counsellors who themselves have cared for family members with dementia and also work as dementia professionals in the healthcare industry. So they really see dementia from both sides. So Mary Catherine, what kind of training do they receive in order to work at the helpline? And are they all volunteers, or is there a paid staff as well?

MCL: They are all paid staff, and they are all professionally trained. First, they have to have experience caring for a family member. And then the second criteria for hire in this program is that they have to have some experience working professionally in the dementia industry, either working in an adult day program, an assisted living, a long-term care facility, with a home health aid agency, so they kind of see it from both sides. And then once they are hired, they go through an extensive training process here at Rutgers Health, where they are trained through a curriculum on how to provide peer support to people.

DG: So I guess that makes them very empathetic if they've all already cared for someone in their own family, correct?

MCL: Oh 100 percent, and that's what makes us a little bit different than the other resource and information numbers that are out there, and the assistance that people do get from their counties. You know, when you call and talk with a professional, they often have the goal to give you the number so you can call for yourself and get the services that you need. But for us, we really go a bit further than that; we've tried to build a relationship with the person on the telephone, and we try to find out about what else is going on in their life, and how we can better support them. The issue with dementia care is that the money kind of follows the person who has the illness. So the person who has the dementia goes to the doctor's office, and everybody focuses on the person who has the dementia; the doctors do, the nurses do, the financial assistance programs are for the person who is diagnosed with the illness. In the meantime, it's the caregiver who is really doing all of the work to manage everything for their loved one's life, but no one is really serving them at all. As a person with dementia progresses, they can do less and less for themselves, which means that the caregiver has to do more and more. With disease progression comes increase in caregiver burden, so that's why it's really important that programs like ours can help the caregiver focus on themselves. So we will stop and ask the caregiver, “When was the last time you went to the doctor for yourself?” or “When was the last time you got to go out to a movie or you took a vacation?” You know, oftentimes all these things go to the wayside because the caregiver is so focused on caring for their loved ones.

DG: Sure. What percentage of calls would you say to the helpline are from professional caregivers versus non-professionals? And how many calls to date has the hotline received, give me a ballpark.

MCL: In about three years we have received about 12,500 phone calls, and then we've also made over 25,000 phone calls. So the whole concept of the peer support is that you call us one time, and then we're not just going to drop you and we're not going to forget about you. We're going to remember you, and we're going to call you back, and we're going to see how you are in a few weeks or in a month. So we have people who we've been following for the whole three and a half years that we have been here. Sometimes our calls out are even more so than our calls coming in. Caregivers are often very reluctant to reach out and ask for help because they feel like they should be able to do it all themselves. So we have experiences of people who we scheduled, we called them back, we call them all the time. If for some reason we miss them for a few weeks, when we call, they'll say, “I thought you forgot about me, you know, I really missed your phone call.” So it really does make a difference, especially to a caregiver who is kind of stuck in the house because they can't leave their loved one alone, so they really can't go out, so there is no one for them to talk to. On top of that, people with memory loss often develop difficulty with language expression, they don't understand language and they cannot express themselves. So literally a person can be living with someone, you know, a husband can be living with a wife who has advanced dementia and there is no one for him to talk to in the home. So having someone call who he can talk to about all the things that are going on and his feelings about the caregiving and the illness can really, really be invaluable.

DG: Sure. And would you say most of your calls are from non-professionals?

MCL: Most of our calls are from non-professionals. I would say about 30 percent are from professionals. And I'll give you a few instances. A visiting nurse might be going to see someone, and they'll see that the caregiver is experiencing a lot of burden. So while the nurse is at the home, she might pick up the phone and call us and say, “Oh hi, I'm at Mr. Smith's house, I want you to meet him.” And she'll put Mr. Smith on the phone, and after that we have the connection and then after the visiting nurse leaves — because those services are usually time limited — then we can continue to follow Mr. Smith and talk with her, we can provide coaching to her on how to handle difficult behaviors, we can help educate her about the disease process, we can help her plan for the future, and we can help her follow through in getting hooked up for services that she might be entitled to. Some other situations are there might be someone who is the social worker at a senior housing building and there could be someone there who is starting to develop some paranoia or some hallucinations along with some memory problems, and they're not quite sure how to get this person the treatment that they need. So then we can strategize with a social worker in the senior housing facility on how to work with the family to get the person an evaluation, and then to help get them moved to a more appropriate level of care.

DG: So I have a question. When I think of helpline I think of incoming calls. Does that make you different from other support lines, that you're actually calling out to people?

MCL: Yes. That we do follow up and we don't forget about people, even when they're not there to reach out to us, we reach out to them and we remember little things, like we remember if they went to their grandson's baptism, or we remember that their hip's been hurting them and then the next time we ask them, “Tell me, how has your hip been?” And those things really matter because it makes the person feel cared about when they're feeling that their whole lives revolve around the illness of their loved one and no one's really paying any attention to them.

I have a good example about that. I had a caregiver and it was actually her birthday, and all of her kids came, and the grandkids came, and they had like a party and everything. And she made the cake for it herself. And afterwards she said, “You know what, all everybody did was focus on my husband.” And her husband was the one who had the dementia. And she said, “It was my birthday.” So that's just typical of how things kind of go, so Care2Caregivers really turns it around and makes the caregiver the prime person.

DG: The helpline is open weekdays from 8:30 am to 4:30 pm, but what about somebody who needs support outside these hours? Where do they go?

MCL: Well, there are crisis numbers for each county, so when they call and if it's after hours, there's a message that directs them to other numbers that they can call for crisis. We do have some caregivers who do better, like at 10 at night they sit down at the computer and they might type us an email, and then when we get back in the next morning, we respond to them, so that works well for people, too. There is another helpline for the Alzheimer's Association that you can call 24 hours a day and someone will pick up and talk with you. They don't do the follow-up with peer support like we do, but at least it's a person on the other end of the line.

DG: That's good to know. As I mentioned, Care2Caregivers has a toll-free number, and that's 800-424-2494. So my question is, do you accept calls from anywhere in the US, or are services limited to New Jersey only? I mean, you're our neighbor, so that's how we found out about you. But if it's the latter, and you only accept calls from New Jersey, do you refer calls to other resources? And how can someone find similar resources in other states?

MCL: Yes, well we never turn down a phone call, and we have come to find out that there are not many programs like ours around the country. So people call us and they get a service that they can't get any other place, so we really have a hard time turning away any caregiver. So we will direct them, we'll talk with them and then we will direct them to their office on aging in their county wherever they live, and we'll help them find some of the research, we'll do research for them, and then we'll help them find things that might be of assistance to them. But, you know, we have some caregivers who maybe they did live in New Jersey and then they moved. We will continue to follow them once they move. If the caregiver lives in New Jersey and the person they're caring for lives in another state, we still continue to follow them and we help them find services for the person that lives in the other state. The caregiver might live in another state and the person with the illness lives in New Jersey so, yes, we're there to support them as well. We even have some caregivers who were in New Jersey with their loved one and then they moved to another country, and we follow them as well. So, yes, we are funded to serve people from New Jersey, so just as long as the caregiver or the person with the illness has some connection with New Jersey at some point. But I really have a hard time turning away anybody who needs assistance.

DG: I wanted to back up. You mentioned an example of a visiting nurse calling. Do you ever have professionals call for their own support? In other words, not for one of their clients, but they're caring for someone with dementia.

MCL: Yes, you cannot believe how often that happens. So you know, I might go and give a talk somewhere to a room full of professionals, and then afterwards, four or five come up and say, “Oh I'm taking care of my mother,” or “I'm worried about my sister.” So then we wind up following them for peer support as well. So yes, everyone's aging and more and more people are getting diagnosed earlier now because we have more access to services and diagnostic services. So people are struggling with this issue across America.

DG: Mary Catherine, you said, “Caregivers are the unsung heroes of the illness,” and I tend to agree when referring to dementia-related diseases. Would you say that professionals face challenges similar to those of family members caring for loved ones with memory loss? Or are they impacted in different ways when they're caring for someone in a facility, and how so?

MCL: Yes, I think it's a little bit of both. In some ways it's different because when a person, say for instance, goes to live in a nursing home, the nursing home staff doesn't know who that person used to be. They can just kind of accept the person for who they are right there, and they can have a really positive relationship with that person based on their strengths, and they don't necessarily know what they can't do because they didn't know them before. So in some ways it's a bit easier for them. But, in some ways, it's really the same because say a person is living in a nursing home, they could be there for a few years and the staff could get really attached to them. And not only attached to the person who is the patient there, but if the caregivers and the family members are coming on a regular basis, they get really attached to the family as well. And when you think about it, most of us spend most of our time at work, and those relationships are very significant to us. So when a person dies who lives in a nursing home, or at a day program, or even if you're a home health aide and you've been providing care to a person over a few years' period, professionals grieve, too. And especially when it's one family after another, you know, it's kind of cumulative. So yes, caregivers, professional caregivers, are at great risk for suffering from depression and grief issues as well, so professional caregivers need a lot of support as well.

DG: I have another question, I wanted to back up to something else that you had said. You mentioned that patients or the family members could live in a different state. And how does that work? How can you be a caregiver for someone remotely? I would think that would be really difficult.

MCL: It is difficult. But people often are living independently who are seniors who have developed memory issues, but they're not willing to relinquish their independence. So part of dementia oftentimes, the part of the brain that controls our insight into our own situation is impaired. So a person might have limited insight into the real consequences of them living by themselves. They might not want to give up the car keys, and they probably shouldn't be driving. They might still be cooking and they shouldn't. Their adult children who live in other states might be saying, “Mom, come live with me in Maine,” or “Let me hire a home health aide to come and bring you meals a few times a week or someone to drive you,” and Mom or Dad will have nothing to do with any of that. So those years when the children or the other relatives are trying to get more engaged in providing supervision for the person can be very, very sticky and full of conflict. So that's when families really need a lot of coaching and strategizing and support and finding creative ways to get their family members to the level of care that's more appropriate for them.

DG: Right. So Care2Caregivers also offers resources that are specific to professionals who work in adult daycare programs. And one that I noticed on the website is the Bridges Toolkit, which includes caregiver coaching, planning and assessment forms, and online videos. You've got another resource called The Circle of Harmony hourlong video and online workbook. And this new paradigm of care for people with dementia consists of five interrelated components: brain, functioning, feelings, behaviors, and interventions. So my question to you, Mary Catherine, is how can these resources be used for professional caregivers in long-term care situations as well as day care?

MCL: Well, we design them specifically for people in long-term care facilities and also people who work in day programs or home health aide agencies and they're meant to be able to be watched in very short segments. So a person can watch it for five minutes if they have five minutes, and then they can go and do some companion exercises on the sheets that are in the workbook that they can download. If they have a whole hour, they can spend a whole hour and they can do that. If a staff wants to do this together, you know, three or four of them can watch a part of the video that they can see online, and then they can sit down, and they can do the questions together or they can do them separately. So it's really meant to work for whatever type of facility you're in, and for whatever type of time you have.

DG: That's great. Well thank you so much, Mary Catherine, for sharing your expertise with us today. And to all our listeners, thank you for tuning in. For more information on Care2Caregivers, visit the website, and that's Care2Caregivers.com. For immediate help, call the helpline at 800-424-2494. If you'd like to learn more about SmartLinx and our fully integrated suite of workforce management solutions, visit us online at SmartLinxSolutions.com.

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