RAISE(ing) Support for Caregivers: State and National Resources for Family Care Partners

Accreditation Statement

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In support of improving patient care, the University of Wisconsin–Madison ICEP is jointly
accredited by the Accreditation Council for Continuing Medical Education (ACCME), the
Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing
Center (ANCC) to provide continuing education for the healthcare team.

Claiming Credit

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To claim continuing education credits using the texting function:
At the end of the podcast episode, you will receive information about texting in a code with your cell phone. 

To claim continuing education credits through the ICEP online learning portal. 
Visit the UW–Madison Interprofessional Continuing Education Partnership (ICEP) website. Go to the Register tab, Click the Begin button and under the Course Progress section, click on Attendance Code -> Start and enter the text code given at the end of the podcast episode. 

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Go to the Register tab, Click the Begin button and under the Course Progress section, click on Episode Evaluation -> Start

Learning Objectives

As a result of participation in this educational activity, members of the healthcare team will:
1.    Describe the unique nature of caregiving for someone living with dementia.
2.    Discuss geriatric assessment and interventions in the hospital and home settings. 
3.    Describe key findings from the 2022 National Strategy to Support Family Caregivers report.

Credit Designation Statements

For more information about continuing education credit for this episode, visit the ICEP online
learning portal at UW–Madison Interprofessional Continuing Education Partnership (ICEP) website.
The accreditation for this course expires 10/9/2024. After this date, you will no longer be able to access
the course or claim credit.

References

Administration for Community Living. 2022 National Strategy to Support Family Caregivers.
September 21, 2022. Accessed October 10, 2023.
https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf.

Carbery M, Schulz R, Rodakowski J, Terhorst L, Fields B. Evaluating the Appropriateness and
Feasibility of the Care Partner Hospital Assessment Tool (CHAT). International Journal of
Environmental Research and Public Health. 2021; 18(24):13355.
doi: 10.3390/ijerph182413355

Fields, B., Yanes, C., Ennis, M., & Toto, P. (2022). Community Aging in Place, Advancing Better
Living for Elders (CAPABLE) program: Understanding the potential involvement of care partners.
Health & Social Care in the Community, 30, e1212–e1219. doi: 10.1111/hsc.13529 

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Prerecorded Dr. Nathaniel Chin: This episode is approved for continuing education credits for physicians, physician assistants, nurses, and other members of the healthcare team through the Interprofessional Continuing Education Partnership at UW-Madison. At the time of this recording, Dr. Beth Fields has no relevant financial relationships with ineligible companies to disclose.  Information on how to claim credit will be shared at the end of this episode. Additional continuing education information is provided in the show notes.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by Dr. Beth Fields, a board-certified occupational therapist, an assistant professor in kinesiology, and a geriatric health services and caregiving researcher at the University of Wisconsin-Madison. Her research focuses on developing, testing, and implementing individual and family-centered geriatric assessments and interventions in the hospital and home settings, such as the CHAT tool and the CAPABLE program, both of which we'll talk about in a few minutes. In 2022, a national strategy to support family caregivers was developed, which lists nearly 350 actions that the federal government, other levels of government, and private sector can take to support family caregivers over the upcoming year. Dr. Fields is now partnering with individuals across the country to help address specific actions and increase awareness of these priorities. Beth, first of all, welcome to Dementia Matters. I'm very excited to have you on.

Dr. Beth Fields: Thanks, Nate. It's great to be here.

Chin: You have an incredibly interesting background. You are an occupational therapist. You're an assistant professor in kinesiology, and a geriatric health services and caregiving researcher. So my first series of questions for you is trying to understand how these come together. How did you arrive at these three things and how do they overlap or complement one another?

Fields: Yeah, so first I guess a little background. I first became interested in occupational therapy and geriatric health care when my grandmother was receiving care in her home. She always expressed a desire to age in place, and my family made sure that she was provided the high quality care and resources that she needed to be able to do so. During that time, I was an undergraduate student at UW-Madison, and I was actually able to observe an occupational therapist help my grandmother complete the activities that she not only needed to do, but wanted to do. The occupational therapist really helped my grandmother modify or break down the tasks and also help change up her environment so that she could be more independently and move around her home safely. So it was just really neat at that point in time to see a healthcare professional deliver really a more holistic care plan. And then My interest in caregiving didn't come until after I completed my dissertation work at Colorado State University. And while at the time I was incredibly excited to have just had that big milestone behind me, I realized I had missed an important opportunity to really involve family caregivers in the dementia intervention I was studying at that time, which is an adaptive horseback riding program for individuals living with various forms of dementia. That really, you know, in reflecting back on my dissertation work and then thinking about the interventions that I was reading in the literature while also practicing as a home health occupational therapist, it really dawned on me how most interventions that are being delivered are very person-centered, which is great, but there are opportunities to deliver person and family-centered care approaches. For the older adult population, that's critically important because family caregivers can be involved in the care approach at any point in time.

Chin: Thank you for sharing that personal and professional story because that helps clarify a couple of my questions about how you came to the position you're currently in. But one of the other factors in your background is that you are an active researcher, so I'm wondering if you can share with us, how you've utilized this experience, your training as an occupational therapist and a researcher in some of the projects you have done and are currently leading.

Fields: Yeah, I guess before I jump into some of the current research projects that I'm leading, I do want to just make a quick note on terminology, especially related to the caregiving geriatric health services literature. Many individuals will use or refer to informal caregiver or care partner. I've started to use family caregiver more in my work because that is, from my experience, preferred in many health systems here in the United States, and family caregivers can refer to traditional family, a partner, a home caregiver, or any other support person that's really designated by the older adult that's receiving the care. So I just wanted to say that up front because I know there's a lot of different ways to describe caregivers out there. Getting back to some of my current work, one project that I actually started when I landed at UW-Madison, which was supported by the National Institute on Aging, was to develop and validate the Caregiver Hospital Assessment Tool, which I refer to as the CHAT. This tool really seeks to identify the needs of family caregivers, of hospitalized older adults, and this tool can help guide health care providers' clinical decision making and delivery of training within the hospital setting. Through our work, our earlier work, we found that caregiving experts across the country, as well as health care administrators and providers and family caregivers of recently hospitalized older adults all thought the CHAT was very intuitive and the design was clear, that the CHAT really identified key concerns and also proposed solutions for caregiving in the hospital setting. And the providers in particular thought that this type of clinical decision-making tool would be feasible to implement in the healthcare setting, which is very important for scale-up moving forward. Most recently, we started a new study that's funded by the National Institute on Aging to adapt the CHAT specifically for dementia care. Right now, I am working with my team to implement co-design sessions. One group will include family caregivers of recently hospitalized older adults living with some form of dementia, and then the other group will include various health care providers, and then during the co-design process, we'll present the chat. We'll ask both of those groups separately their thoughts on the CHAT. What, if anything, needs to be changed for dementia care in particular? And then halfway through the co-design process, what I think is really neat is that we'll swap the ideas between the two groups. So that way the providers can learn what the family caregivers think and the family caregivers can learn what the clinicians think. I'm really excited about this step in the research process because once we adapt this tool, then we'll actually be able to move into the clinical trial phase and test it to see if it does indeed improve caregiving preparedness.

Chin: I love the co-design approach that you're taking because both parties are really important, the family caregiver and then the healthcare professional who's also trying to help provide care for the person living with dementia. So involving both of them makes so much sense, but it's not something that's commonly done or has been done in the history of the field. I'm also very impressed with the fact that these things are intuitive and feasible, because as someone who's going through this process that has been a family caregiver. You know, there are great ideas out there, but if they aren't intuitive and you can't get them done rather quickly, they're just simply not going to be done, so your tool is very pragmatic, and it sounds like you're having good success in being able to use it in the hospital setting.

Fields: Right. And I think with the first study, I think why it is so clear, while we didn't use co-design when we were developing the CHAT, we did go through different stages of validity testing. We assessed with one group of clinicians, the clinical utility of the CHAT, and then with family caregivers, we assess the face validity of the chat. So there were various steps in making sure that the end users of this tool were really involved in the development and validation of it.

Chin: Before we started recording today, Beth, you had shared with me this other project called CAPABLE, and I'm hoping you can explain to our audience what exactly is happening within this study.

Fields: Yeah, so CAPABLE is a program developed by clinician researchers at Johns Hopkins School of Nursing, and it has a 12-year track record with demonstrated effectiveness and improving function to help older adults age in place and has been offered by over 40 organizations across the country now. In my work, I'm partnering with colleagues at the University of Pittsburgh and the National Rehabilitation Research and Training Center on family support to add on to this program, with permission of Johns Hopkins, to figure out how to best include family members and friends in this person-centered, evidence-based intervention. So we've learned several considerations so far for involving family caregivers when initiating, delivering, and also following the program. We've learned the importance of really providing the older adults the choice during the screening process of CAPABLE if they do want their family member or friend caregiver to be involved in the CAPABLE sessions. We also have learned the importance of defining roles and sharing information in a collaborative manner, and then also how critical family caregivers are in helping reinforce the knowledge and skills training that older adults learn when participating in CAPABLE. It's been really great to be working so closely with Johns Hopkins researchers because they're also adapting this program right now for dementia care. Within the next several years, we'll start to see different iterations of this evidence-based program to better address and meet the needs of individuals across our country.

Chin: Let's talk more about caregiving. When you speak to an audience of researchers who may not have any connection to people living with cognitive disease and their care partners, how do you explain what caregiving is and what caregiving is like for people living with dementia? I'm also going to ask before you speak, Beth. In your answer, can you comment on how caregiving for someone living with dementia is also different than someone caregiving for someone else with a chronic disease that's not dementia?

Fields: Yeah, great question, Nate. So when I'm interacting with individuals living with dementia and their families, I first like to just provide some statistics, and then I get into more specifics of what the caregiving journey can look like, noting that each individual's experience is so different. But I will say for the statistics, the Alzheimer's Association released a special report detailing many facts and figures that families and individuals living with dementia should be aware of.  From that report, we learned that more than 11 million Americans provide unpaid care for a family member or friend with some form of dementia. In the U.S. alone, that care is valued, the economic value of it is more than $339 billion. So what makes up that $339 billion for responsibilities? There's so much that goes into caregiving, and the responsibilities can vary greatly across the continuum of care. For example, the level of family caregiver involvement, the duration of caregiving, and the degree of control can really be dictated by the level of care the person requires. For example, a family caregiver of older adults with chronic conditions that are more predictable, like Alzheimer's disease, may start by providing occasional daily care, such as managing finances and scheduling health care appointments. But as the disease progresses, the older adult can require more intense caregiving that spans the course of several years, and family caregivers in that situation are likely to help older adults also transition to an assisted living or skilled nursing facility while also retaining some of those previously mentioned caregiving responsibilities like managing the finances and healthcare appointments. Alternatively, you would ask, what does family caregiving look like for individuals with other types of chronic conditions, or how is caregiving different for other types of family caregivers? Another example, many of us in the geriatric field know that older adults are at an increased risk of falling and fracturing their hip, especially those with osteoporosis, and this situation likely requires more episodic care. This unpredictable injury, the fall, can require moderate to intense involvement of the family caregiver, but only over a span of, you know, weeks, maybe months. So family caregivers in that type of situation are likely to help older adults follow their hip precautions, complete appropriate exercises, and modify their home environment if needed to really promote safety and independence, and some other caregiving responsibilities that I haven't mentioned with those two chronic condition examples can include locating and coordinating services from like health and human service agencies, like Meals on Wheels, in-home personal care attendants. Family caregivers also help with housework, and more and more commonly today, because hospital lengths are getting shorter and shorter, family caregivers are now starting to help with complex medical and nursing tasks in the home as well.

Chin: It's interesting to hear you describe that caregiving itself has evolved as health care has changed, too. And of course, as culturally things have changed with each generation. But it is incredible to hear the number of hours of unpaid care and the cost of that. I mean, do you feel like our health care system is currently relying on family caregivers in order to take care of our population?

Fields: Yes, our healthcare system is definitely relying on our family caregivers to provide, you know, various levels of support, and I think that's really due to several different reasons, like, there's a workforce shortage for healthcare, there are shrinking family sizes, there are advances in medicine and technology, which contribute to longer lifespans. Also going back to what I said earlier, because of the advances in medicine and technology, people are discharging home more quickly and with more technology in their home, requiring family members to really step up and make sure that various things are being done in a correct fashion.

Chin: Well, that leads to my next question, our next topic. That's in 2022, there was this important national strategy that was developed by the federal government to support family caregivers, and I know you've been following this very closely. So I'm hoping you can introduce to our audience the strategy and the report that came out.

Fields: Yeah, of course. To start with some background, it really goes back to 2018. The Recognize, Assist, Include, Support and Engage Family Caregivers Act became law, and this is commonly referred to as the RAISE Act. This law was created really to direct our Secretary of Health and Human Services to develop the national strategy that you just mentioned. In 2021, the RAISE Family Caregiving Advisory Council that was pulled together, delivered its initial report to Congress, and then in 2022, as you mentioned, their national strategy to support family caregivers was released. The strategy was developed jointly by advisory councils created by that RAISE Act, as well as the Supporting Grandparents Raising Grandchildren Act, and there was extensive input from the public, which was great to see. That included family caregivers, as well as the people they support, and in your intro you had shared that the strategy does include nearly 350 actions that federal agencies can take and more than 150 actions that state and local communities can take. And these actions, there's a bunch of them. They're really organized five key goals, which are outlined in the strategy, and I encourage everyone to go and look at this report online. The five key goals include: increase awareness and outreach, build partnerships and engagement with family caregivers, strengthen services and supports, ensure financial and workplace security, and lastly, expand data research and evidence-based practices, and a bunch of organizations, agencies, and people from across the country are really coming together to help address and promote these actions right now and hopefully will continue to have reports that show what is being done to address those five priorities.

Chin: Beth, the national strategy will be available in our show notes for our listeners so they will have direct access to this. I'm wondering, from your perspective, what do you say to policymakers and family caregivers? Why would this document matter to them?

Fields: Yeah, so from a policy and caregiving perspective, the national strategy is really important because it provides us a roadmap to improve services and supports for family caregivers, and family caregivers historically have been an invisible care workforce. So I think that is why this matters, first and foremost. And then really, to my understanding, this is the first time that the ideas from local and state agencies, as well as nonprofit organizations, are integrated with recommendations for the federal government. The development of the list also represent, for the first time, agencies across the federal government that have formally worked together to coordinate family caregiver support planning. Going back to that, RAISE, Family Caregiving Act and Grandparents Raising Grandchildren Act and all of those that were involved in the key legislation.

Chin: So what is Wisconsin doing with this report?

Fields: Right now, the National Alliance for Caregiving is championing a campaign for action on this national strategy, and this campaign is focused on putting those recommended actions into practice, and it's being advised by a steering committee that consists of leading national organizations like the AARP, the National Council on Aging, and many more. And I'm proud to say several Wisconsin-based organizations have joined this campaign and express their commitment to really accelerating the implementation of those recommendations here in our home state. So some of those organizations that I want to give a shout out to, the Greater Wisconsin Agency on Aging Resources, Inc., the Wisconsin Aging Advocacy Network, and the Wisconsin Family and Caregiver Support Alliance.

Chin: So what do you think are areas in which Wisconsin is doing well as far as this national strategy and what are areas that probably could use a little bit more improvement?

Fields: Yeah, so Wisconsin's family caregiver support programs really span the entire state with locations in every county and tribe, and these programs give family caregivers access to various types of information and services. For the listeners, I just wanted to briefly share some eligibility criteria for those programs because many may not be aware. So family caregivers are eligible for program assistance if they care for someone who's aged six years older or someone with Alzheimer's disease or related dementia. The programs also assist grandparents or relative caregivers 55 years of age or older or who care for children under 19 or someone with a disability who's 19 to 59 years of age. One of my favorite resources through this program is Trualta, which is an online portal that really can show family caregivers how to complete specific types of care tasks and give them practical tips. For example, there's some wound care, there's some medication management resources, and access to various types of support groups, just to name a few. What can we do better? You know, as a researcher, I firmly believe that we just need to coalesce more, share what's working well and what isn't, and I think that the information exchange really needs to happen on all fronts, not just the traditional academic outlets like peer-reviewed articles and conferences, but public hearings and letters to our representatives. Policymakers really need to learn from the experiences of other state governments that have supported various caregiving initiatives that aren't yet here in Wisconsin, like the Caregiver Advised Record and Enable Act and a caregiver tax credit.

Chin: So Beth, not everyone who listens to this podcast lives in the great state of Wisconsin, and I recognize that. I welcome everyone to come visit. But for those that don't live in Wisconsin, what do you want people to know about the national strategy that might be relevant to them?

Fields: Yeah, so in order for the existing caregiving initiatives to actually result in real change, we need to come together as a country because every single one of us at some point in time will be a family caregiver or need one, and this goes back to my previous comment about needing to coalesce more. Because so many states are doing great things for family caregivers already, you know, so other states can learn from Wisconsin, for example. We were recently recognized in the National Academy for State Health Policy for publishing customizable materials and toolkits for caregivers on wisconsincaregiver.org. And our state's using our agency and disability resource centers to really increase public outreach and address engagement priority of the National Family Strategy Report, so I think just sharing is caring. Look to other states to really be models.

Chin: To end today, Beth, based on your work and your experience in this family caregiving space, what can family caregivers do right now if they have questions or they want information to become the best caregiver possible?

Fields: One of my favorite authors, Arthur Kleinman, I encourage everyone to read the book, The Soul of Care, but he really said it best. Caregiving is about enduring. It requires presence, openness, listening, doing, and cherishing of people and memories. I think being able to do those things really requires family caregivers to take care of themselves first, because when your needs are taken care of as a family caregiver, then your family member or friend is going to benefit. So schedule that screening or appointment with your primary care provider. Join a local support group or online platform like Trualta. Don't be afraid to ask that neighbor or friend for help, and for policy really to have an impact, tell your story to your representatives.

Chin: Well, Beth, with that answer, I want to thank you again for being on the podcast, and to let our listeners know that Dr. Arthur Kleinman was on the podcast on July 16th of 2020. For those that are interested, they can find that episode in the show notes. But for now, Dr. Beth Fields, thank you for your interview and for sharing all this great information.

Fields: Thank you so much. It was great being here today.

Prerecorded Nathaniel Chin: As a reminder, continuing education credit is available for this episode through the Interprofessional Continuing Education Partnership at University of Wisconsin-Madison. To claim credit, you can text this code: ZEZJON at this number 608-260-7097. Again the number is 608-260-7097 and text this code: ZEZJON.  Your feedback is important to us. To complete an evaluation form for this episode, see the show notes.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. 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 of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Haoming Meng. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.