Ep.4: Alzheimer’s Awareness: How to Support Clients, Caregivers, and Family Members

Melissa Mendez: (00:00)
Welcome to vision the home care leaders podcast. I am Melissa Mendez with home care pulse, and today’s guest is a very special one. Wendie Colvin is an amazing nurse author and community nursing subject matter in both acute and post-acute care. Wendy’s background is in emergency nursing and community based skilled home health as well as palliative and hospice care and has laid ground for her service as senior clinical content writer and subject matter expert here at home care pulse. She is practiced at the bedside in multiple settings and has extensive experience as a manager and educator in both home health and hospice settings. Wendy has seen a lot of industry changes and has taken those experiences to create dozens of educational lectures and webinars as well as role specific training tools and orientation programs for home health and hospice, clinicians, and various agency partners. So welcome Wendy. And before we jump into the good stuff, tell us, uh, a little bit about yourself and how you got into clinical content writing.

Wendie Colvin: (01:12)
You make me sense. So fancy. I hate hearing descriptions of myself. um, yeah, I came to home care pulses just since last September. So my fancy title is senior clinical content writer, but that just means I’m one of the nurse authors. Um, right now I focus on a lot of the clinician content, mostly hospice items right now. Uh, but yeah, I grew up in emergency rooms for about eight years and, um, I’ve always done wound care, PRN ostomy stuff on the side. So that kind of naturally made me wanna do home health. And I love that. Um, did a lot of work with the local palliative care group that did home visits, um, and that really piqued my hospice interest. So, um, I finally got my master’s degree in nursing with an education focus and I just kind of felt like I wasn’t using it. Like I always thought that I would. So I stumbled on home care pulse, and I’ve been here living the dream and writing everything possible, clinician wise for the training here and I’ve done several webinars. Um, and apparently now podcasts is added to my, my repertoire. So thanks for that.

Melissa Mendez: (02:28)
Of course. Thank you. I’m, I’m really excited for our discussion today. The topic is Alzheimer’s disease and you actually recently wrote a course about Alzheimer’s disease and related dementias and with June being Alzheimer’s disease and brain awareness month, I think it’s a really perfect time to chat more about the disease. Uh, specifically looking at the role the caregiver plays in patient care, the growing number of those living with the disease attracting caregivers who want to work with them and providing mental health support to the caregivers in the field during my research, um, on statistics for Alzheimer’s for our discussion today, the sort of simple, but odd description came up in regards to Alzheimer’s. It is a disease that affects daily life, and that struck me sort of strange. Um, but a powerful statement. Um, what do you think about that blanket statement?

Wendie Colvin: (03:32)
Yeah, I mean, I, I love it. I think it’s so simple, but it’s so true. It affects daily life. Alzheimer’s just does, if you go and ask someone professional or family caregiver who cares for a patient diagnosed with Alzheimer’s, Hey, what’s your average day? Like that’s probably not something they can pinpoint and tell you every day is so different. There’s unexpected mental changes, behavioral fluctuations emotions. It, it really is different every day. Um, you know, when we were talking about doing this podcast, I just got this image in my brain of one of the first real patients that I ever had with Alzheimer’s when I was younger, my, um, grandmother had Alzheimer’s disease, but she lived in a different state. I, I was just removed from that process of really seeing her in her later stages of it. So I was a, a CNA in an ER was one of my first weekends.

Wendie Colvin: (04:30)
And you know, of course there’s someone crying and confused and moaning and Hey, you you’re new. Go sit with her. And I went and sat with her, um, and she had Alzheimer’s. She had an UTI, her transport back to the, um, nursing home that she was from was delayed go figure. And she just needed someone to calm her down. So the charged nurse kind of parked me there and I’ll never forget just how I felt like she was so sad and thinking, oh my gosh, I hope she’s not like this all the time. I, I hope this is not her life. I remember I, I held onto her hand the entire time and she just wouldn’t let go. And it was the only thing that would calm her down. Um, and you know, a couple days later it was one of my first, um, RN clinicals.

Wendie Colvin: (05:16)
I was in nursing school when I was a tech and there was another Alzheimer’s patient in this local memory care unit. And again, she had the same diagnosis, but she was so different. She was just staring at this really pretty art deco dresser in this fancy mirror, just brushing her own hair. She was completely nonsensical babbling, but like calmly confused. And I thought of that other lady in the ER, and it just like hit me. How could two women with the same diagnosis be so different? It was just very overwhelming. I still stayed in healthcare. It’s okay. But I just remember those two ladies, you know, being so different in that disease really kind of hitting me. So that whole statement of it affects daily life. It, it does. And it affects daily life differently depending on, on the person and on who’s taking care of them. So, absolutely. I, I like that statement. It’s true.

Melissa Mendez: (06:11)
Yeah. Yeah, definitely. And when we talk about the care for someone living with the disease, um, you know, caring for someone with Alzheimer’s or dementia related diseases, it really requires a, a team of people and from daily caregiving, uh, to the decision making, there’s a lot of moving parts and as Alzheimer’s progresses, so does the role of the caregiver. So how can we collectively prepare caregivers and clients and their families for that progression of the disease?

Wendie Colvin: (06:47)
Yeah, I mean, that’s a really difficult question and, you know, I just redid the clinician Alzheimer’s and related disorders course, and it, it was written well, but it was very textbooky I thought when I was looking at just updated course, so I kind of scraped it and wrote it completely differently. I talked about this, um, in one of the more recent blogs that’s online for home care pulse, but I followed one fictional patient. Her name was grace with Alzheimer’s. Um, and just wrote about how she was progressing with those symptoms from being diagnosed by her family doctor, with her daughter, her who was her primary caregiver, Shelby at her side, needing home care to then needing home health and placement in a memory care in an assisted living facility to needing hospice. So it was just very pointedly. This is how one fictional patient needs all of our post acute care levels and what we can do to care for not only grace, but her daughter, Shelby, who’s dealing with it as well.

Wendie Colvin: (07:49)
Um, so I wanted to have that realistic scenario of think of this patient as somebody that you really may have similarly in the community, but even me sitting here typing and trying to really delineate out the progression of the disease, that that was hard. If it was really hard to create that progression and, you know, make up how Shelby was processing it, because it is so different for each patient and family member. Um, you know, when I, I had so many patients with Alzheimer’s just in my years as a nurse and that whole concept of how, how do you handle the disease? It it’s any disease really, but especially with Alzheimer’s and these dementia symptoms of certain conditions, it it’s really hard because it is so different for every patient. And we can’t really spell out the exact progression. Some people are diagnosed with Alzheimer’s and they’ll live 15 more years, and then other people will pass away within two or three.

Wendie Colvin: (08:48)
It all depends on what kind of symptoms they have have. They’ve been hiding it. When did they get diagnosed? There’s different kinds and stages of, of Alzheimer’s in and of itself. I think, you know, the best advice is to just keep teaching what we do, know what you’ve seen in other patients, what we think is gonna happen as the disease advances. You just prepare with education as much as possible. And it’s teaching not only the families, but ourselves too, that word prepared, or even over prepare. It’s like when you’re pregnant and getting ready, I have two daughters. I’m still not prepared for them. They’re 10 and 12. And I have no idea what to expect when they’re both in middle school next year. There’s not a concrete way to prepare every patient and family for exactly how to respond to any dementia disorder or symptoms that come because none of the symptoms are exactly the same.

Wendie Colvin: (09:45)
There’s not a rule book for ’em. There there’s so much research in case studies and all of us have personal and professional experiences that let you draw on, okay. Here’s some normals that we know about the progression. Um, but that preparation is gonna be ongoing is gonna be every day and again, different for every patient. It’s just learning to keep over preparing and adapting as they progress. However, that may look at for them. I think one thing too, is, you know, you would have that, that phone call or that face to face meeting with families that were just getting to that moment of, of being so overwhelmed because they felt like they weren’t doing enough. It’s almost impossible to have someone who’s managing a patient diagnosed with Alzheimer’s independently in their home with absolutely no help whatsoever. It’s just the family unit that is caring for every little thing.

Wendie Colvin: (10:40)
That’s rare nowadays. It’s just not in the lifestyle. It it’s, it’s hard. It’s almost impossible to do. And I would tell people that we’re just reaching that, that tension and that, oh my gosh, now I’m at this point of, I don’t know how to prepare. I need help. And you just say to them, that’s okay. It it’s okay to need help. That’s why we’re here in this post-acute world. That’s why we have so many levels of home health and facilities with specialized memory care units and private caregivers that acclimate their hours to be there. Exactly when patients need them. It’s, it’s helping to prepare an ongoingly, adapt to what those needs are. I think, you know, with the disease too, like Alzheimer’s, that, that is changing. I just had this article that popped up in my email as a link the other day, you know, a couple years ago, ACEP was a big, great medication. Now this vertical was talking about infusing mono foal antibodies like monthly, and that’s a treatment for Alzheimer’s it. We don’t need to just teach the families. We have to teach ourselves too. It it’s over preparing and adapting all of us just to help deal with this disease in particular. It’s that old adage of keep swimming, just keep swimming

Melissa Mendez: (11:54)
Yeah. Keep, keep moving and keep learning and keep growing. Definitely because the numbers are only gonna grow from here. One of the statistics I saw from the Alzheimer’s association was that the CDC predicts that by 2060, the total number of Americans living with Alzheimer’s is projected to be over 14 million people. Um, so that’s a lot of people who will be living in various stages of that disease. So again, back to training, but what can we do now to prepare and attract individuals to become specialists in diagnosing, in treating and caring for those living, with the disease?

Wendie Colvin: (12:37)
Yeah, I mean, baby boomers, aging. I think technically my generation is at the very tail end of the baby boomer. So , we’re all getting older, but I mean, when I first became a nurse, I had a lot of world war II veterans, even an occasional world war I spliced in there, but now they’re Vietnam veterans. I mean, think about that and put that in perspective, my parents were born in the fifties, so are my in-laws like really stop and think of those populations that are close to you that are aging, what kind of resources are gonna be around for them or after the pandemic? Are, are they gonna just absolutely have that mentality of I’m staying at home? No matter what out of fear. I think the, you know, a lot of these agencies just literally need to sort of admit the vulnerability and say, I’m raising my hand.

Wendie Colvin: (13:27)
We need help. We want people that want to take care of our aging population. Like it, it’s my mom and dad that, that are gonna need you. Please help me help you. I think a big key to attract that kind of empathy that so many of the healthcare workers have, because that’s what drew them to work with people is, is to just show them that you have a good reputation and that you care about what you’re giving to your patients. You want to be an asset to the community. You want to be a positive in that post-acute world. You want your patients to feel valued and the staff that’s taking care of them to feel valued. You always want your staff to take care of that patient. Like it’s their mom or their grandma that’s being cared for. I mean, I think when you’re trying to hire, it’s totally appropriate to say, we need the help.

Wendie Colvin: (14:19)
We need people that wanna do this job and be invested in it in the long term with us. And more importantly again, I mean that training curriculum to really grow that solid team of post-acute workers is really important. We have a, um, a large set of courses approved by the Alzheimer’s association, which is a great example of this it’s for caregivers, um, professional caregivers, but it’s hours of training that create that niche just for the Alzheimer’s and related dementia’s population. But it also makes that staff member who you’re offering this training to have a unique and valued set of skills. You’re giving this training, that’s gonna serve multiple purposes. They’re gonna be specialized just for that population. And for themselves, just as a professional, you want the patient to benefit from your knowledge, but you also wanted them to focus that skillset and make your agency specialized and valued in the community.

Wendie Colvin: (15:20)
It’s one of those win-win for everyone to have focused initiatives like that. I think, you know, that’s my life right now is making that sort of specialized training, fun and engaging and something that people are gonna wanna take. Like, yes, I’m working for a memory care right now. Or my caregiver agency has a huge population in this area with 50% of the patients having dementia related needs. I want to have this certification or accreditation from Alzheimer’s association because I wanna show that I have the, the top level training and when I’m taking it, I don’t want it to be boring, which is where I come in. but you want people that really wanna stay in their job roles as a real career for the long term. You don’t wanna just say, here’s your 10 courses a year on hand washing and standard precautions and be done, move along.

Wendie Colvin: (16:16)
They, everyone needs to be invested in that process. I think it’s even easy too, to think of, you know, home care, home health hospice, any an office manager answering a phone or doing the scheduling from the nurse, giving the end of life meds. You need to really value each member of that team because everybody has a role in ultimately helping that patient, helping that postacute community. It’s just giving that training and that opportunity to grow for all the levels of staff that you might have, all the different types of roles it’s showing that you think that your staff is intelligent enough to, to maintain that value for your agency. You’re just ongoing investing in them. That that’s where the training really comes in.

Melissa Mendez: (17:04)
Yeah. That ongoing training. It it’s so important. And it’s, it’s something that in the benchmarking study that 82% of agencies do provide Alzheimer’s training. But despite having that large amount of home care agencies providing those training, um, the Alzheimer’s association still reported that 55% of primary care physicians stated that there is not enough dementia care in the communities to meet patient demands. So with the number of, of Americans living with the disease, how can agencies support not only the caregivers through the training with proper Alzheimer’s trainings, but focus in on the clients and their families?

Wendie Colvin: (17:53)
Yeah, I mean, I think the nice part is the way that even the Alzheimer’s association, um, approved courses that we have for caregiver they’re, they’re so usable, not just for the professional or we call them, you know, career caregivers, but that can be used as teaching tools for families, for patients too. Uh, it’s totally adaptable. I mean, that’s, again, why we write in that manner, we have instructor led PDFs, but we also have really approachable technology on a cell phone that you can just pull up and say, well, let’s look at this symptom list together, or we’re gonna look at this unit together and then talk about it. It’s so adaptable and can be used in different ways. And it is definitely in our long term plans to be able to have an even different almost community based, you know, very specific patient and family, lot of education.

Wendie Colvin: (18:43)
But we do know that what we have now can still be easily adapted and, and used to help train and understand. I mean, families, they are a re a resource and they’re gonna be with them just as much, if not more than you are. So don’t assume they can’t help. You know, they’re teachable. They they’re part of the process. Even if they’re outta state, you still need to teach ’em. I mean, again, you just need to make that care team as big as you possibly can. I think it’s, you know, that statistic is kind of surprising too, but if people don’t know what you’re doing in your agency, then they’re gonna assume that you’re doing nothing. If that makes sense. So, you know, when you make that effort and, and have your staff specially trained in certain things, promote it, tell people, you know, oh, Hey, we’ve taken eight hours of this training, just so you know, my staff did this or I, I have this.

Wendie Colvin: (19:35)
So you do understand that I have some special knowledge that, that I’m proud of. Um, you know, sometimes you can even do, and I’ve done this a few times back when I was a supervisor, but like set up a, a zoom or a team’s question and answer, if, you know, you have a high population of families and there’s patients with a certain disease process and you feel like you need to have an open forum of, okay, let, let’s really have a discussion of what we know that maybe you all don’t make a support group. I mean, go and do in services and talk about how, how you’re training your staff to these primary care physicians or to other local facilities. And, you know, just have dialogues have, have the conversation of, this is what we think we know, or this is what we do know, how can we share that with you?

Melissa Mendez: (20:24)
Yeah. Building the care team, making it as big as possible. You know, we talk about child rearing and it’s like, oh, it takes a village to raise the children. Well, the same could be said in caring for patients with Alzheimer’s it, it takes a village most certainly. And absolutely another interesting statistic that I read was that 83% of help provided to older adults come from family members, friends, or unpaid caregivers. And over one third of dementia, caregivers are daughters, um, and caring for a loved one is hard. It’s emotionally hard, it’s physically hard. And those living with Alzheimer’s, the toll that it has on caregivers is heavier than that of caregivers of individuals without dementia. So in your experience, how can agency owners give the support both mentally, physically to caregivers to reduce burnout and stress of those caring for those, with the disease?

Wendie Colvin: (21:27)
Yeah, I mean, I think, you know, the Alzheimer’s course that I wrote, I kept using sort of the words that grace was fading. She was fading away, but a patient with dementia does fade in a very different way. You know, they’re still alive and they’re with you, but you’re losing them slowly. And that’s, I don’t know if it’s worse than other diseases, but it’s so hard. Compassion, fatigue is a huge deal in healthcare. Even before the pandemic, it sort of had more light shed on it because obviously the pandemic was overwhelming and exhausting for a lot. But I think, you know, agency owners in particular that mental and physical health is, is huge for your staff. You’ve got to have a contingency plan. When I first came, um, to home care pulse, I wrote a blog and it was on compassion, fatigue. I literally had a hospice nurse hysterically breakdown on me on the phone.

Wendie Colvin: (22:21)
I remember I was stuck in traffic trying to get to work. It was a Friday busy, busy day plan, right. And she had just had this onslaught of, of deaths and, you know, compared to our census, it was a lot and she broke down and I didn’t have that list of resources. I didn’t have that number of the counseling group that was available with our insurance, through our company available to her. I had nothing. So, I mean, thankfully she got through it, she did get some counseling. Um, you know, we gave her all the support that she needed and, and she was able to move past it. But compassion, fatigue really is a real thing. And trust me, you don’t wanna get that phone call. You wanna have a backup plan of, okay, before this really happens, what would I do? Or what can I do for my staff as something extra?

Wendie Colvin: (23:12)
And, you know, one thing that I, I point to all the time and I’ve written about this in a few blogs is just ask your staff, are you okay? Literally, it’s that simple? How are, how are you doing? Are you overwhelmed? You know, what can I do to make things better? And even just asking and giving that little inkling of support is, is important. I mean, we all get lost in the day to day and drowned, and sometimes don’t even realize it. And all of a sudden it fits Monday. And now tomorrow’s Friday and you got a million things left on your post-it note to scratch off, but asking staff, you know, are you okay? That is very, very important. And again, make, make a policy. Even if that policy is just the list of things that you can have in your resources that are available or even free counseling in the community have have something in your back pocket.

Melissa Mendez: (24:04)
Yeah. Something to show them that you’re there for them, that you understand what they’re going through and give them a safe environment to let off some of that emotion that they’re going through. It’s yeah. Very important. Mm-hmm well, thank you, Wendy. Um, I think this was such an important conversation today, and I hope that all of our listeners will take this information, look at what they’re doing for the caregivers, what they’re doing for the patients and their families, and really provide the best care possible for those living with Alzheimer’s it’s, it’s so important. Um, if you’d like more information about Alzheimer’s and the specialty programs offered by home care pulse, certainly visit our website at home care, pulse.com and as always, thank you for joining us here at vision, and thank you, Wendy, for your insight. It was wonderful. And we will see you all next Tuesday at 2:00 PM Eastern standard time.