A Glimpse into the National Family Caregiver Support Program

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Nathaniel Chin: Hello, Dementia Matters podcast listeners. Thank you for returning to the podcast during this COVID-19 pandemic. I know you have a lot on your mind and despite being at home, I know life is not easy. It's an understatement to say we are living in an extraordinary time. But whatever you want to call this ongoing experience it is asking extraordinary things of us. And life doesn't just stop because of it, which is why this podcast continues. I want to pivot here on Dementia Matters and address important issues affecting those with cognitive impairment and those without during this COVID-19 coronavirus pandemic. I cannot cover all the issues and frankly shouldn't. I encourage you to go to trusted sources for specific information such as the U.S. Centers for Disease Control and Prevention, your state and local health department web sites and the Alzheimer's Association. You can also find resources on our website at adrc.wisc.edu that's adrc.wisc.edu. And that of the Wisconsin Alzheimer's Institute at wai.wisc.edu for other interesting and important stories on the COVID 19 pandemic. I would recommend my colleague at UW Health Dr. Jonathan Kohler of the Surgery Sett podcast who has a special series called the Frontlines of COVID. We will include these links to all these resources in our show notes. For those of you affected by Alzheimer's disease or any cause of cognitive impairment, you know better than anyone that it takes a community to care for those affected, and to work on the front lines of treatment, prevention, and cure. What we face with COVID 19 is no different, we all are needed in this fight and I thank you for whatever it is that you're doing take care and be safe.

Nathaniel Chin: My guest today in Dementia Matters is Ms. Jane DeBroux, a caregiver program coordinator for Dane County where she administers the National Family Caregiver Support Program. Jane's degree is in professional communications from Alverno College in Milwaukee and she spent the first part of her career as a professional writer, editor, and marketer. In 2015 Jane completed a certificate in gerontology from the University of Washington - Seattle and she retired from state service to pursue an encore career working with older adults. She continues to use the skills from her prior career by writing and publishing "Caregiver Chronicles," the Dane County caregivers program monthly newsletter. Welcome, Jane, to Dementia Matters.

Jane DeBroux: Thank you!

Nathaniel Chin: With the current COVID-19 pandemic we are all facing new challenges. This has never been truer than for our listeners who are providing care to others. So in today's program I want to focus on the National Family Caregiver Support Program. So to begin what is the National Family Caregiver Support Program?

Jane DeBroux: The National Family Caregiver Support Program provides funding for services and supports to help family members and to help other informal caregivers. So it doesn't need to be a spouse or a child, it could also be a neighbor or friend. And it helps with their ability to care for older adults who are living in their homes.

Nathaniel Chin: So it's a pretty broad array of people eligible for this. You do not have to be a family member explicitly.

Jane DeBroux: Correct.

Nathaniel Chin: And where does the program funding come from?

Jane DeBroux: The funding actually comes from the Older Americans Act. So its title III e, and I know doesn't mean tons to a lot of people, but it does provide programs, and it has been increased at this time. So as part of the CARES act stimulus we are getting some additional funding, which is very positive. And it also lists lifts a cap. There was a 20% cap on supplemental services it can provide like minor home modifications or assistive devices, so that's another really positive development.

Nathaniel Chin: And how has it been impacted by COVID-19?

Jane DeBroux: Well there used to be many, I would say stricter parameters, for what we could do with grant funding, and now we're trying to reach out and expand it to do more things that allow us to reach people in their homes to lessen isolation and to not limit ourselves in quite as strict of ways so that we can really adapt to what people are needing in these really unusual circumstances.

Nathaniel Chin: Well that's really good to hear so we're able to reach more people during this time and more people need help I imagine.

Jane DeBroux: Yes.

Nathaniel Chin: And so what sorts of things does the program offer to people?

Jane DeBroux: Well the main thing that people have used it for, which is very important and helpful, are things like temporary respite where someone could get help with bathing, they could get housekeeping chores, adult day centers and some caregiver self-care things, so that caregivers can get out and get a break. Unfortunately that's changed a little bit in terms of people worrying about having people come into the home. We're trying to be creative with that right now, and also adult day centers and senior centers are closed right now, so we're trying to be very flexible in working with that. It can also do the supplemental services I was mentioning, which are minor home modifications or adaptive equipment. So if someone needed a lift chair or a ramp to get into their house or grab bars in their shower, it can do that. And then we do other supportive things like help refer people to support groups to have options counseling with them for succession planning, let's say a caregiver has to step out for a bit who might be able to step in, and also just helping them in general get within the aging network in access services.

Nathaniel Chin: What types of assistive devices are you seeing more people needing?

Jane DeBroux: People often need, particularly if they're working in the constraints of having a home that's not been very well suited to aging in place, they are doing a lot more of things like maybe moving the laundry upstairs, that hookup isn't too difficult. We have helped with things like the stair lifts, chair lifts, those kinds of things. Also for folks who are working with a loved one who has Alzheimer's or dementia we're seeing people who would like to use different kinds of alarms, personal emergency response, so all those things are among the possibilities for grant funding.

Nathaniel Chin: And you mentioned caregiver support groups, and even if they're not in person you know there are other ways of course for people to connect with each other. Why do you think caregiver support groups are so important especially now?

Jane DeBroux: Well I think first of all, caregivers don't always identify themselves as caregivers. They're seen ... providing support to older adults is just sort of what family does for one another, but they may not really talk about the toll that it might take, or the impacts on their own lives. So support groups really allowed them to talk frankly with other people they know are in that same position and they can talk about stresses with others will understand. And the other very important thing I think is to be able to share ideas and resources with each other. So I think they're really important.

Nathaniel Chin: And a part of support is respite and so I guess, two-part question for you. One, if you could define for us what respite means for caregivers, and then why it's important to offer respite services.

Jane DeBroux: Well very broadly respite services just talk about getting our caregiver a break, and that can take any type of form from maybe they need care for their loved ones so that they can take a vacation. Maybe you know a daughter or son is finds it very difficult to bathe a mother or father, so they get the respite by having someone come in and be able to provide bathing for them. They might need just something for themselves so self-care is also part of it, we've had people who've gotten a Y membership maybe just getting in the water and swimming or someone who's had some massage. So whatever that person needs to give them a break, we really try to work around that.

Nathaniel Chin: And I'm so glad you offer that because one of my experiences in clinic is that caregivers often feel guilty about needing a break or not even recognizing that they need that break. And it's so important to not only let people know what is available, but now to have a group of people able to help provide that respite. You know I wonder too, because there are barriers not only to respite, there are barriers to keeping people at home. And so what do you see are some common barriers that people experience to remain at home, whether you have a disability or just a chronic condition?

Jane DeBroux: I think as I mentioned before aging in place does not always lend itself well to add to the space that people have lived in for their lifetime, so of course there's fall risks we can help eliminate, things like that. So definitely we're looking at things to help them adapt to where they live. Another really important need for people is transportation, and I'm sure driving cessation is something that a whole podcast could be done on discussion with that, but it's made so much easier when there is an option available. So the grant can provide for helping people with that. The other thing is access to meals, and meals on wheels or home delivered doesn't work for everybody, so one thing we can help with is you know having a service provider come in and do some preparation, help them with the shopping, so all of those are things that can help overcome some of those barriers.

Nathaniel Chin: Is there an income restriction level on who can apply for the program?

Jane DeBroux: There is not. From the National Family Caregiver Support Program there is no eligibility requirement in terms of income.

Nathaniel Chin: Oh wow, and then as far as the care recipient do you have to have dementia or form of cognitive impairment to receive that help?

Jane DeBroux: No you do not. It is available to persons who are providing care to anybody who's an adult age 60 plus, although it does prioritize services to low-income families and older adults with dementia, so while a priority it is not a restriction to other people who would have need to participate in the grant program.

Nathaniel Chin: Now I imagine there's probably an increased demand with the COVID-19 and the shelter at home, are you seeing more people applying for funds?

Jane DeBroux: We're seeing people apply for funds differently, which probably makes sense in that if you were availing yourself of adult daycare, now some people are switching over we're looking at trying to find them some in-home providers. People are looking for help with nutrition in particular ,and we are helping them find ways to get groceries and meals to their care recipients, or in the case of the spousal caregivers for them in their household. The other really deep concern is about social isolation. And several people have worried a lot about maybe a parent living alone or a neighbor, and we are trying to develop more programs to reach out. Right now we're looking at a way to bring music therapy to people via video so that someone can come into their home and do something active and uplifting with them. So it's really changed how we're trying to flex what we've been doing.

Nathaniel Chin: It seems like you have such a broad array of opportunities and such creativity in trying to help people. Now I imagine there's gonna be some increased interest after this podcast. If someone was interested in applying for the program who did they contact?

Jane DeBroux: If they're living in Dane County they can contact me and they can actually call me, I'm taking calls now and working with folks and they can reach me at 608-261-5679 or they can check out the website, which is aaa.dcdhs.com for more information. If any of the listeners are in other Wisconsin counties, they can go to wisconsincaregiver.org and on that home page there's a map of the counties, you click on your county, and you will find where to get your caregiver program information and if anyone is listening who is not in Wisconsin, they can just contact their local Area Agency on Aging or their local area Aging and Disability Resource Center and they would be able to refer them on to a caregiver program. 

Nathaniel Chin: That's wonderful and we'll also have those resources listed on our website. You know thank you so much, Jane, for being on Dementia Matters, and we really appreciate your time and all of this helpful information.

Jane DeBroux: Thank you for having me.

Nathaniel Chin: Please subscribe to Dementia Matters on Apple podcasts Spotify, Podbean, or wherever you get your podcast and rate us on your favorite podcast app. It helps other people find our show and lets us know how we're doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic clinical and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Bonnie Nuttkinson and edited by Bashir Adeen. Our musical jingle is "Organisms" by Chad Crouch. Check out our website at adrc.wisc.edu that's adrc.wisc.edu. You can also follow us on Twitter and Facebook if you have any questions or comments please email us at dementiamatters@medicine.wisc.edu, that's dementiamatters@medicine.wisc.edu. Thanks for listening.