Dr. Terri Harvath
Appearances
Health Chatter
Caregiver Burnout
Yeah, I agree, Lisa. And I think, you know, in nursing, we see burnout when resources get more scarce and nurses are asked to do more with less. And I think the sense of burnout comes from not being able to provide the care that you would like to provide or that you think your patients need and deserve. And we saw burnout and accelerate dramatically during the pandemic.
Health Chatter
Caregiver Burnout
And it has continued post pandemic to be concerning because we're seeing lots of nurses and other professionals opt out because the conditions have been very difficult. Those same conditions has made caregiving much more difficult for family members because a lot of what community supports are available dried up or became inaccessible because of the pandemic, because of sheltering at home.
Health Chatter
Caregiver Burnout
For those caregivers who maybe were getting help from other relatives, friends, or neighbors, often they got isolated in order to protect both the caregiver and the older person from COVID. And so we've seen a really dramatic increase, I think, in caregivers who are feeling overburdened in the care that they're providing.
Health Chatter
Caregiver Burnout
And while some of the services are coming back online, we're not back to pre-pandemic levels. And we've also seen, because of the pandemic and the isolation, increased frailty among those older adults and their caregivers. And so it's been like the perfect storm to create conditions that really, make it difficult to be a family caregiver right now.
Health Chatter
Caregiver Burnout
Yeah, Lisa, that was exactly what I was going to say as well, is we need to identify caregivers. They need to see themselves that that's who they are. That's the role that they are engaging in. And I think in terms of the community, offering support is, of course, important.
Health Chatter
Caregiver Burnout
Offering tangible support, something, you know, I will sit with your relative for two hours so you can go grocery shopping, so you can go for a walk. So offering really specific kinds of help. Can I stop and pick up something from the grocery store or the drug store for you? I'm on my way.
Health Chatter
Caregiver Burnout
Stopping in just to check in and see how the person is doing, that sort of ongoing support, because caregivers are often isolated. And so having contact and having people who are willing to come in and actually do something can be really valuable. And particularly if it's a regularly occurring situation,
Health Chatter
Caregiver Burnout
You know, I know every Tuesday I can go grocery shopping because, you know, my cousin's going to come over and watch my mom. That sort of thing can really help with some of the predictability that that helps ease burnout, I think, for caregivers.
Health Chatter
Caregiver Burnout
Sure. Part of it in terms of resources, first of all, there aren't nearly enough. Let me just say that to begin with. But those that exist are often disease-based. So reaching out, for example, to the Alzheimer's Association, your local chapter, can be an avenue towards that. Same way with chronic lung disease, multiple sclerosis.
Health Chatter
Caregiver Burnout
So there are a number of organizations that specialize in the chronic conditions that often result in the need for a caregiver. That's a good point. Going there. You can reach out to your primary care provider. And there's actually brand new changes to the Medicare regulations that allow physicians,
Health Chatter
Caregiver Burnout
physician assistants, nurse practitioners, other professionals to bill Medicare for offering instruction and services to family caregivers, even if those family caregivers are not Medicare beneficiaries. That happened January 1 of this year. And it's the first time ever that Medicare The Center for Medicare and Medicaid is providing reimbursement for services to non-Medicare beneficiaries.
Health Chatter
Caregiver Burnout
And it's an important start. It's not enough, but it's a really good start. Oftentimes, there are also local organizations that you can access through your AAA, the Area Agency on Aging. that will be connected locally to what might be available in your particular zip code, for example. Lisa, I'm sure you have an inside track on Minnesota.
Health Chatter
Caregiver Burnout
Excuse me, two other resources. One, AARP has developed actually quite a lot of resources for family caregivers and their website has, for example, very brief videos.
Health Chatter
Caregiver Burnout
I know because I was involved in making these videos, but how to do complex care activities, like if you have to do nebulizer treatment at home, or if you're doing a complex wound care, even transferring somebody in and out of a car, in and out of bed, there are brief videos, like five minute videos that actually talk, and show how you do those things.
Health Chatter
Caregiver Burnout
I also want to note for caregivers who are veterans or caring for a veteran, the VA has been much more proactive than our non-VA health system in developing resources for family caregivers. And I know That's true in the Twin City area as well. But through the VA, you may be eligible for additional support services if you're caring for a veteran or if you are a veteran.
Health Chatter
Caregiver Burnout
Yes. Caregiving, the care of older adults, and we should probably be specific that that's what I mostly refer to because that's what I know, knowing that families take care of people at all ages, right? But for older adults, the cost of their care is increasing. And a lot of that is borne by the family caregiver. And we see that both in direct out-of-pocket costs that caregivers incur,
Health Chatter
Caregiver Burnout
pay to provide the care, to buy resources, to fix mom's house because it needs for her to stay there. It needs some modification, but also indirectly because it's not unusual for working caregivers, those who are caring for a family member and also holding down a job to have negative impact on their work.
Health Chatter
Caregiver Burnout
We are seeing increased numbers leaving the workforce because of caregiving and also not people, the economic burden to society because Productive workers are not as productive as they could be. So there are costs at many different levels for families to provide care. And it saves society money, right, when an older person is cared for at home. But it's not a freebie.
Health Chatter
Caregiver Burnout
We can't assume that it's always going to pencil out to be the better care. economic option because there are impacts that ripple out through society. Yeah, Clarence.
Health Chatter
Caregiver Burnout
Yeah, the red flags that I've looked for and that appear in some of the research literature is when the caregiver feels like there are no more happy times, that there is no enjoyment in the care that they are providing. It's all drudgery. when the caregiver feels like they're the only one and nobody else can provide the care or nobody else is willing to provide the care.
Health Chatter
Caregiver Burnout
So that sense of feeling very isolated and that you're the only one can also be a red flag. Any mental health indicators, increased depression, anxiety, suicidal ideation, those are of course very concerning and need to be addressed. And the antidote, I think, to some of this is finding meaning and finding enjoyment in the caregiving.
Health Chatter
Caregiver Burnout
And sometimes it's by taking the time to sit down and have a bowl of ice cream with your dad and just stop for that moment and not be thinking about what else needs to happen. And when we can have some of those moments during the day that we realize I've just done a good thing, or this is good in this moment, that can help us feel like we're doing a better job.
Health Chatter
Caregiver Burnout
When I was at UC Davis, I opened a clinic for family caregivers and What was interesting to me is that many of the caregivers that I saw, they made one appointment. And what they wanted to talk about is, these are the things that they were thinking and doing. And was that OK? And if we can say, yes, you're doing the right thing. For a lot of caregivers, that was all they needed, to know that.
Health Chatter
Caregiver Burnout
And I would say, it sounds like your instincts are spot on. Trust them. Because family caregivers don't want to do any harm. And that's what they're afraid of, that I'm going to make a mistake that is going to do some harm. Other caregivers were facing really difficult ethical dilemmas. You know, a common one was my dad's doctor says he's no longer able to live by himself.
Health Chatter
Caregiver Burnout
My dad says the only way he's leaving his home is feet first. Do I really have to move dad out of his home?
Health Chatter
Caregiver Burnout
And I think when we sit down with caregivers and talk about what are the real risks to safety and can they accept those risks on behalf of the older person's autonomy and quality of life, then we can come to solutions that feel better and don't feel like you're wrenching somebody out of their home against their will.
Health Chatter
Caregiver Burnout
But a lot of times the risks that we as healthcare professionals see are very unlikely. Or they're not preventable no matter where the person is because memory care is not a risk-free environment either.
Health Chatter
Caregiver Burnout
And when we actually disentangle the risks and understand that some are reasonable to accept on behalf of this older person's quality of life or their sense of autonomy, that can alleviate the caregiver that they're not endangering their family member and that they're not
Health Chatter
Caregiver Burnout
forcing their family member to do something that they don't want to do and so I think sometimes the burnout is fearing that I don't know what the right thing is to do or do it it's there's a lot of mess involved with that yeah yeah I would add a couple of red flags being physical health too
Health Chatter
Caregiver Burnout
All right. Well, I think it's a couple of things that are happening. One is we are living longer. Two, we're seeing the aging of the baby boomer generation, which is this huge expansion of the numbers of people, not just in the U.S., but across the globe that were born after World War II. And that baby boomer generation didn't have as many children as they had siblings.
Health Chatter
Caregiver Burnout
Sure. So I think a very interesting statistic is that since the time the US Census has been tracking nursing home or that sort of environment as a possible residence, which is something like the 1920s, the number of people over the age of 65 living in nursing homes has remained consistent at 4%.
Health Chatter
Caregiver Burnout
which is often a shocking statistic because there continues to be this myth that in the US we somehow don't take care of our elders the way other countries or cultures do, but that's simply not true. Most older adults are living at home in the community. And if they need help, they're being cared for by a family member. They're receiving that help.
Health Chatter
Caregiver Burnout
And when I say family, I'm using that word very broadly to include friends, neighbors, relationship by affinity, partners, all of that. And And I think it's an important statistic for us to keep in mind because it does mean that most of that care is happening in the community and is being borne by families who are doing it.
Health Chatter
Caregiver Burnout
I'd like to add to that, the out-of-town sibling dynamic. Because I think there is a pattern that I've seen frequently where, as Lisa was saying, there's a primary caregiver, siblings are living out of town. And sometimes what will happen is when the out-of-town sibling comes home, I believe it's motivated by a desire to make up for the caregiving they've not done.
Health Chatter
Caregiver Burnout
They offer advice to the primary caregiver about what they could be doing differently in order to make their life easier or better. And the primary caregiver rarely experiences that as helpful or supportive. It feels like you're being criticized, like you don't know what you're doing.
Health Chatter
Caregiver Burnout
And so I try to caution both the primary caregiver, but also the out-of-town siblings to have a different conversation about that and to recognize that The person who is boots on the ground needs to be given deference and support because they're the ones who are in the trenches and do, excuse me, doing the work.
Health Chatter
Caregiver Burnout
And while there may be things that if I were the caregiver instead of my sibling, I would do differently. It, Unless I'm willing to take that care on 24-7, I really have to take a backseat to that and offer other kinds of help. What can I do while I'm here that would be helpful to you? That's a great point. Of all that you're doing, what would be helpful?
Health Chatter
Caregiver Burnout
And to ask that question rather than to offer. I think growing up, there was a saying in my household, advice is to be given, not taken. But I actually think advice is to be asked for, not offered. Yeah. And so, you know, I think that, you know, offering to help is better than saying, have you thought about doing it this way?
Health Chatter
Caregiver Burnout
And so we're seeing a huge increase in the number of older adults. I mean, for a while, 10,000 people were turning 65 every day. And so in 1950, you had a 30% chance of being a family caregiver. By 2030, you're going to have a 3% chance, just because there's so many more older adults compared to the younger people who are often their family caregivers. So...
Health Chatter
Caregiver Burnout
Terry. First of all, thank you so much for this conversation. It really, I think, is an important one for all of our communities to be having. And what I would say is that echoing what Lisa said, caregiving sort of spans the gamut. it can be meaningful and rewarding and a source of joy. And also caregiving happens in the context of conflict, historic conflict in relationships.
Health Chatter
Caregiver Burnout
And when there has been a difficult relationship, those caregivers often find it even more difficult, especially because I'm really glad we haven't used the term loved one at all today, but often health professionals will talk about caring for a loved one when they're not all loved. And so I think that caregiving happens in all kinds of families and of every possible iteration of family.
Health Chatter
Caregiver Burnout
And so recognizing that the family in which the care is happening influences the care that is provided and influences the impact on both the older adult and the person providing care.
Health Chatter
Caregiver Burnout
And meeting the dyad where they are at with whatever that relationship history has been is a better way, I think, to support families than to try and say, well, this is the time when it should all go loving and caring because sometimes care needs to just be good enough and not out of this world fabulous. And it's better for everyone when we can recognize that. Absolutely.
Health Chatter
Caregiver Burnout
Yeah, I was gonna say one of the things that is also happening in our healthcare system is that we're discharging patients home quicker and sicker. You know, patients who used to stay in the hospital for longer periods of time being cared for by doctors. professionals who've gone to school to learn how to provide that care are now getting discharged home.
Health Chatter
Caregiver Burnout
And we're asking family caregivers to not only take on very complex care, but to do so with very little training. Things that I went to nursing school to learn how to do, we asked family caregivers to do, and maybe we've given them a little bit of instruction and not given them an opportunity to practice doing that.
Health Chatter
Caregiver Burnout
And so they're very ill-prepared often to step into that role that is quite complicated.
Health Chatter
Caregiver Burnout
And with all the news about overdose, family caregivers, I think, are often reluctant to treat pain adequately because they're afraid of getting their family member addicted or something bad happening. And again, we don't give them good guidance. I think of the family caregiver as the invisible member of the healthcare team.
Health Chatter
Caregiver Burnout
You know, they're absolutely essential, but we don't, as a healthcare team, we often don't include them in the planning. And we also don't include them as a target of our interventions. You know, and that's why I think Lisa's role is so important because we She's out there really working directly with family caregivers to help them in the role as it is unfolding.