COPD Caregiver’s Toolkit

Mark Russel, Vitalograph:

Welcome, Joel to our podcast.

Joel Africk, President and CEO of the Respiratory Health Association:

Thanks so much, it’s good to be here.

Mark:

Please give us a little background on yourself, your education, your experience and your current responsibilities.

Joel:

I am the President and CEO of Respiratory Health Association out of Chicago. Respiratory Health Association is a patient service and advocacy group and we have got a long history. This is not how I started out my career, I spent 20 years practicing law here in Chicago. After 20 years I started looking around for a little bit more mission-based work for the remainder of my career.

Mark:

Wonderful. Please tell us about the Respiratory Health Association, and its history in the statement behind your mission.

Joel:

Respiratory Health Association was started in 1906. At that time the biggest health threats facing the public were tuberculosis and influenza. Over the course of the next 100 years we came up with the now respiratory health but the scientific community came up with drugs that could treat tuberculosis. Flu still comes in and out as a health threat but for several years Respiratory Health Association has looked more broadly at respiratory diseases such as asthma Chronic Obstructive Pulmonary Disease, sometimes referred to as COPD a lung cancer. We’ve been active in the efforts to help people who want to quit smoking succeed in their quit efforts. Those are some of the things that we’re focused on today.

Our formal mission statement is to prevent lung disease, to promote clean air and to help people live their lives better through education and research and policy change.

Mark:

Great. Please tell us how big a problem of Caregiver Wellness is in the US? This is a problem that I began to learn about from observing my parents, actually my dad, who is going to be 94 years old is living with COPD chronic bronchitis. COPD is the 4th leading cause of death in the United States so it’s a pretty serious illness. My mom’s role since she didn’t have COPD was to be the family caregiver. These are informal relationships often with loved ones. I am not talking about hired caregivers, I’m talking about the family members who love the people who are living with chronic illness. What I saw with my parents was my mom wanted to succeed as a caregiver but she didn’t have all of the resources that she needed to succeed. She’s not a medical person she has no healthcare training. What she knows is that my dad had COPD and she’s living with him 24 hours a day. So the question was how are COPD caregivers doing and what can we do about how to help them succeed in their caregiving role?

Joel:

We were surprised by a couple of things when we started looking. One was that if you add up the economic value of all of these family caregivers in the United States for all of the chronic diseases it’s probably $400 billion a year in economic value. The second thing we discovered is that the caregivers are not doing particularly well in the COPD area. It turns out that caregivers have higher rates of depression and anxiety than even the people that were taking care of. Caregivers very often aren’t sure of how to make their home as safe as possible. They are not sure how to help with drugs and other medicines and therapies that people with COPD need. They are particularly bad at self-care. So here’s the question if we don’t do a better job of taking care of our caregivers, who’s going to pick up the slack as the caregivers start dropping off. It’s not going to be the healthcare system it’s just going to be more family members. This became kind of a personal cause for me to develop resources to help our caregivers. What else should the caregivers know about managing the home of someone with COPD, what are the kind of specifics that more than just the family member caregiver? Even people that come in as home health caregivers, what can you do for somebody living with COPD?

What I think you need to understand is how the people who are living there, when the caregiver isn’t there. How they are doing, so for example a significant number of people living with COPD get assistance with supplemental oxygen. You’ve seen people with the little cannula by their nose to help them get oxygen. They need to breathe even more than the people who are out and around are the people who need that extra assistance at night. In order to make your home safe for somebody who’s on oxygen the caregiver needs to understand about the equipment, how to operate it, what to do if something goes wrong like a power outage, or if something breaks. They need to know there shouldn’t be any cigarette smoking in a house that’s got that much oxygen. That is just an example.

Caregivers need to get on top of this so they can manage the home for the safety of the patient and for the safety of themselves.

Mark:

Joel this is fascinating because it really comes close to home for me. My father has COPD and recently in the last couple of months, he was in a car accident. He is fine from the car accident of course; he had an airbag deploy and hit him in the chest. That is not good for a person that has COPD and there for a while, he seemed to be self-sufficient until that car accident. My mother who is relying on him quite a bit at the time saw that now she became the caregiver role so tell us about this new caregiver toolkit that is in development. What does it entail?

Joel:

Yes, I’m pleased too and proud to share this with you.

The idea of a caregiver toolkit is it should be a kind of caregiver owner’s manual. For the new role, they’re playing in their lives as a caregiver. There are a lot of things that are made to give to the patient, and there are a lot of things that are made by drug companies, or they’re prepared by our healthcare system. This toolkit is for the caregiver and unlike the book the ABCs of COPD or something like that, this caregiver toolkit is set up with five or so different sections. The idea is that a caregiver uses the toolkit to look at the sections that are some interest so. For example, there is a section on what to do after somebody with COPD has been hospitalized. They call it an exacerbation or a flare up somebody’s had a bad bout with their COPD they find themselves in the hospital and in many cases they find themselves transitioning from the hospital to a rehab place and then transitioning again to home.

The caregivers’ toolkit has a section on what the caregiver should be thinking about when a loved one is hospitalized. For instance, what can I do to make the home ready to receive the person with COPD back what special services, will I need in order to make the home safe when the person comes back? If you are the caregiver of somebody with COPD and you have been fortunate and your COPD family member isn’t hospitalized, you don’t have to read that section at all. Other people with COPD are not in an emergency but they take a lot of medications, and those medications can include inhalers sometimes because somebody with COPD needs extra assistance, they will need help with a machine. That is called a nebulizer that delivers inhalation therapy. The caregiver can play an important role in setting up the nebulizer or in helping the patient learn how to use an inhaler to get a full dose of medication. If you are relying only on your 15-minute appointment in the doctor’s office, it can be confusing. I will say, that when somebody goes into the hospital with COPD sometimes their medications while they’re in the hospital can change. The toolkit is designed to help demystify their process.

I’m pleased to say that we developed the toolkit we printed a few thousand copies of the toolkit. Two weeks ago the National Institutes for Health digitize our entire toolkit to make it available online. It is free for any COPD caregiver who wishes to get access to it.

Janson Lanier, Vitalograph:

That is fantastic, and some great information there. Are there also support groups for caregivers on social media or through your website? We have gotten to a place where people are going to social media to have peer-to-peer discussions.

Joel:

A great question. For a long time, there would be support groups, there would be pulmonary rehab groups for the patients. Where they could do controlled breathing and other exercises. There would be support groups for family members. With COVID the hospitals and Respiratory Therapists became overwhelmed. The nature of COVID it became a lot less safe for COPD patients to gather in an indoor setting and even for their caregivers together in an indoor setting.

For a support group, there is a Facebook group online for COPD caregivers only. I believe that’s the name of the group. It is a closed group, so you click on it and ask to join. I found it to be a tremendous group of people who are in all different places on the COPD caregiver journey. I would strongly recommend that people look at that, and they look at the resources in our online toolkit.

The online toolkit is on the National Institutes of Health website. The fastest way and easiest way to find it is to go to my organization’s website www.resphealth.org. On the front page is a story about the COPD toolkit. If you click on it, it will take you right to the digital toolkit on the NIH website. If you have got a further question about it, send the question to us at the Respiratory Health Association and we’ll do our best to answer. We have got a webinar coming up and I’m sure they’re going to go through this COPD toolkit.

Jansen:

Can you give us some highlights on what to expect in this webinar and what questions and issues it’ll address?

Joel:

The webinar is going to include some patients and caregivers. We believe it’s also going to include some of the people in the healthcare system who can be telling their patients and caregivers about the importance of the toolkit. One of the things that the toolkit looks at is to help people make the decision about when to call the doctor when to call 911, and how to make the most of a medical appointment. There is really a shared interest in getting the information in the toolkit into the hands of the patients. We will talk about the different parts of the toolkit on the webinar.

I just want to mention that one of the most important parts of the toolkit is the focus on caregiver self-care. Our caregivers need to find time to get away from their caregiving duties, pursue a hobby take a walk to pursue their fitness. We do not want them to become more anxious and depressed. It is important that caregivers understand that they can be guilt-free in pursuing an outside interest and in taking a break. That is going to make them better caregivers. We don’t want them burning out.

Mark:

I’m sure that Facebook organization can link up with people that do a little respite care. They can get away and be able to maybe do an overnight and still feel comfortable that they’re still part of the loved ones’ care is that correct?

I think there are a couple of other ideas. One is that let’s say we’ve got a situation that involved my mom and dad. If my mom needed respite care, there may be another family member who can come in for 24 hours and assist. There are outside-home caregivers who might assist. That is going to cost a little bit of money, but it’s got to translate into a better mental state for the caregiver as well of course.

Joel:

You are right. We had to contact a national organization at home instead of senior care, and they did an excellent job. Again, it’s private pay and non-medical but they alleviate a lot of the stress that the caregiver must do and be able to create an environment where they don’t get burned out.

I’m going to add one other suggestion it doesn’t affect everybody. For those people who are the caregivers of people who served our country in the Armed Services, I found that the Veteran’s Administration can be very responsive and can discuss people who are registered with the VA. The availability of resources and that includes bringing in some private healthcare at the expense of the VA on a regular schedule to make the caregiver’s life more livable.

Mark:

I agree 100% as a veteran myself I am proposed to send the message out there again if they if you’re a veteran and not registered to the VA please do so. There are resources maybe not be today that you need but down the road, there could be some great resources that help financially. My parents just as an example have relied on their local church because they have a lot of support groups there and the neighborhood to help. People that are needing assistance and or respite care while their loved ones are recuperating or help with the opportunity of being a part of the caregiving process. There are lots of resources out there people just need to reach out and a lot of these support groups do suggest a lot of those avenues for a lot of different people.

Well Joel is there anything else you would like to add to our podcast, help our audience. You know most of them are Respiratory Therapists Pulmonologists and Asthma Analogy they’re healthcare professionals. What can you say to them when their patients come in with COPD. What are some of the signs that they could see and suggesting this toolkit or other means.

Joel:

We found I’m sure they agree, that an informed patient and an empowered patient. That means the caregiver too is likely to be a healthier patient. We at Respiratory Health Association are trying to help strengthen the link between the patient/caregiver and the health care system. If this all works and the caregiver toolkit is currently being evaluated for its positive health benefits for caregivers and it will be evaluated for patients alike this should work to everybody’s collective advantage. It should make the caregivers feel better and maybe live longer and provide better care. The patients will receive better care the administration of medications and inhalers can improve.

This is not snake oil this is something that the NIH has now adopted on its website. We believe in evidence-based medicine, we believe in identifying gaps in the system and closing those gaps. That is why we are especially proud that this caregiver toolkit that we’ve developed in COPD is consistent with the national action plan. It is consistent with all of the standards that are held in patient care so we can all do this together. Our Respiratory Health Association is not going to try to take anybody’s patience. We just want everybody to prevent lung disease, promote clean air and live better through education research and policy change.

The webinar is taking place on June the 15th at noon if this podcast comes out afterwards it will be posted on the Vitalograph website, under the tab training. The webinar will be based on there with a record of the webinar and contact information to your organization.

Mark:

Why don’t you give everybody again that website once more where they can access your caregivers’ toolkit.

Joel:

Thank you. We are the respiratory health association www.resphealth.org and click on the story for COPD caregivers.

Mark:

Well, Joel thank you for being on our podcast. This is great information kind of touched home to me with my parent as it did with yours. So hopefully we can reach out to people and let them know what other opportunities are out there to help with the caregivers. Thanks again.

Joel:

My pleasure