Understanding Long-Term Care Options in Oregon with Dr. Ann McQueen (Part 2)
Shoshawna Rainwater and gerontologist Dr. Ann McQueen discuss the complexities of choosing long-term care settings for dementia patients. They emphasize balancing past wishes with current needs and highlight the importance of environment, staffing ratios, and personalized care. Ann advises visiting facilities unannounced, talking to direct care staff. And they stress the need for caregivers to advocate for high standards and not settle for mediocre care.
Resources and Links
Oregon Department of Human Services Long-Term Care Licensing
Oregon Licensing Complaint and Enforcement
Oregon Office of the Long-Term Care Ombudsman
The Art of Visiting Memory Care: Tips for Families
Our Guest: Dr. Ann McQueen:
Dr. Ann McQueen has worked with and on behalf of older adults for the past 30 years. Her experience includes working in long-term care facilities and administration, designing and facilitating training, contributing to academic research and teaching at the college level, and managing policy and programs for both local and state government agencies. With specific expertise in adult protective services, long-term care facility licensing and regulatory oversight, Older Americans Act programs and services, and dementia care, Ann is especially interested in the subjective experiences of people experiencing dementia and in helping to create a world that affords them the safety, respect, dignity, and companionship that all human beings deserve. She has presented at various conferences, both locally and nationally, on topics related to safety and protection, dementia and communication, and the role of humor in the lives of older people and care partners. Ann has a BFA in musical theater, an MS in Communication Studies, and a PhD in Gerontology. She lives with her terrific 19-year-old daughter, two co-dependent dogs, and an aloof cat. Her favorite things include Carol Burnett re-runs, chocolate chip cookie dough, and snow skiing.
The content of this podcast is provided for general information and educational purposes only, and does not constitute legal, financial, medical, or other professional advice. Always consult a qualified professional about your specific situation.
Text us and please share your thoughts on Hope Floats episodes and topics that would be helpful to you!
Thank you for listening!
Please be sure to review and share the Hope Floats podcast with any listeners who might be interested.
To see more tools, resources, and learn more about the hosts you can visit https://www.rainwaterconsultingpdx.com/hope-floats-podcast
= = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = = =
Interview Transcript
DISCLAIMER (00:00)
Hello, Hope Floats listeners. The content of today's podcast is provided for general information and educational purposes only, and does not constitute legal, financial, medical, or other professional advice. Always consult a qualified professional about your specific situation. Now, on with the show.
Shoshawna Rainwater (00:20)
You're listening to Hope Floats, the essential companion for the dementia caregiving journey. Whether you're navigating a new diagnosis or managing the complexities of late-stage care, Hope Floats is here to provide the tools and perspective you need to stay centered and even hopeful. I'm your host Shoshawna Rainwater.
As a licensed clinical social worker with over 20 years of experience, I've guided hundreds of families through this transition, but I've also walked this path, personally, as a caregiver for my own parent with dementia. I understand the clinical landscape of dementia, the emotional weight of caregiving, and everything in between. I'm so glad you're here. Let's jump in.
We are in Part 2 of our episode with Dr. Ann McQueen, a gerontologist and older adult advocate here in Oregon. And today we are talking about the complexities and opportunities in choosing the right care setting for our person experiencing dementia. We’re gonna talk about what to look for in the environment, we’re gonna talk about staffing ratios and learn about that; and we’re going to talk more about how to emphasize and advocate for personalized care for our people. If you haven’t had a chance to listen to Part1, I recommend and suggest you go back and do that. That’s Episode 28. So here is Episode 29 and I hope you enjoy.
How do families find the right setting given their person's sort of stage of dementia and what's going on for them? And also, we know dementia is not static, it's progressive. And so how do we balance this “Well, this setting might be a little too much care at the moment, but we know that with time this is going to be where they need to be?” So, talk us through some of those pieces.
Ann McQueen (02:22)
Yeah, I think there are different aspects or elements to keep in mind. The first one is I think a lot of times when families are thinking about what's the best thing for my loved one, they think back to what their loved one might have said before the diagnosis or before the progression of the diagnosis got to the point where it is now.
Shoshawna Rainwater (02:50)
Yes.
Ann McQueen (02:51)
And I'm not saying discount that completely, but I think there needs to be an acknowledgement of both what the person thought they wanted when they weren't as impaired, and what the person seems to want now. A good example of that that I can think of is I remember working with in one care environment where there was a woman who had throughout her life always gone to the beauty salon–like on a weekly basis--to get her hair done. And you know, it was very important to her.
As her dementia progressed, she had trouble sitting still. Anything more than a minute or two. This was a woman who you know would walk kind of the circle during mealtime and we quickly realized, she's not gonna have any kind of pleasant experience if we're constantly taking her back to the table and trying to get her to sit down. So, she would eat on the run. We'd give her sandwiches or French toast sticks or pieces of fruit and she'd walk the circle and we'd give her something else and she'd walk around and be eating that. So, she would eat and walk at the same time.
She had one family member who was quite adamant about “no she needs to go to the beauty salon and keep having her hair done,” because that family member was trying to preserve what was…
Shoshawna Rainwater (04:28)
Yeah.
Ann McQueen (04:29)
… and it was having a detrimental impact on what is, you know. And it took some time, and, actually having the family member come and see what it was like, she also felt very uncomfortable leaning back to have her hair washed. And, you know, when the family member saw that this was really getting traumatic for her, that family member was like, “Okay, we don't have to do this anymore.” But we could still style her hair. So, it wasn't like it was all or nothing, but I think that's really an important piece.
Shoshawna Rainwater (05:13)
Yeah. Finding that balance between honoring the individual who they were and what was important to them prior to the dementia and the progression of dementia, I think is a good example of what we talk about a lot on Hope Floats, which is the “soothers and stressors paradigm,” that good dementia care–this is a nod to Joyce Beadle, also dementia consultant, here in Portland. We try to find those things that increase and the soothing aspects of this person's life and day. And we reduce the things that are distressing to them. That becomes the paradigm or the lens that we try to view their care through.
And what was historically true for that woman was that a soother was to sit in the beauty chair and to get her hair done. And as the anatomy of her brain changed, that became a stressor, not a soother. And so it took changing how we show up well for her to understand like what was historically a soother is now a stressor.
Ann McQueen (06:15)
I think about dementia care as being–good dementia care–as being a stringing together of a series of pleasant moments throughout the day. Sort of thinking about what the person's past wishes were as well as where they are now is really important, with a more of a focus, I think, on where they are now. Because that can change, and it can change moment to moment, as many people know.
I think the other thing to think about, too, is the amount of stimulus that might be in an environment. And compare that to the amount of stimulus that your person seems to feel most comfortable in.
Shoshawna Rainwater (07:05)
I think you're hitting on something important, which is if your person has been a long-standing introvert who liked very little stimulus, they're not likely to have a complete overhaul into extraversion if they've always been introverted and preferred less stimulus.
Ann McQueen (07:25)
Absolutely. For people who tend to like to be in an environment that is maybe a little less noisy, less going on, more calm--maybe, like you said, they've been introverted– an adult foster home or an adult care home might be an ideal situation if that person's sort of been a homebody.
Trying to recreate the environment for them that they've always felt most comfortable in, is important. That's not to say that all adult foster homes or adult care homes are calm and less noise– I mean it really depends on the other residents and staff are who are in there.
You know, there are rollicking adult foster homes out there …
Shoshawna Rainwater (07:42)
Yeah.
Ann McQueen (08:15)
…where there's lots of stuff going on and people coming and going and, you know, and that may be an ideal environment for somebody who's used to like, their house being Grand Central Station and family coming and going and lots of people. But this kind of gets back to talking about, you know, when you visit a facility, really trying to find out what kinds of life enrichment activities are happening and matching that with what you think your person would enjoy.
Like you said, if they've been introverted all their lives and they just you know, they've enjoyed reading, looking out the window, being in nature, those kinds of things, that's gonna be very different than someone who's always been very social, went to parties…
…liked to be around lots of people, that kind of environment. So, I think those are important things to consider. How much reassurance your person needs, I thi nk, is really important. Being in an adult foster home or adult care home where there's one staff person who's caring for five people, that direct care staff person may have more time to offer that occasional reassurance, than in a larger facility. It might also be, though, that your person likes to be around activity. It's happy people watching. So, in that case, an assisted living or a residential care community might be a better fit.
Another thing that I think is super important--and there's some research around this too--in a lot of residential care communities, memory care, there's this whole shared room thing that happens. And providers sometimes will make the argument, oh, a person with dementia is a prime candidate for a shared room because they don't spend that much time in their room, maybe. Or it's a way of helping them to have, a friendship that's right there and easy; but, I've seen more often than not that's not true–that what happens more is that that person will go into their room or be in their room and someone else enters or is there and it makes the person feel like they're being invaded.
You know, “What's this person doing in my space?” And so, I just want families to be aware that when they go for a tour or they go visit, that's an argument that a facility will make.
Shoshawna Rainwater (11:18)
Mm.
Ann McQueen (11:18)
“Oh, she's gonna have this great friend and oh, we'll try to match her up with somebody who has the same interests,” and “oh, he's gonna feel like he's with his guy friends.” That doesn't usually work that way.
Shoshawna Rainwater (11:31)
You don’t see it play out that way.
Ann McQueen (11:36)
Now that's not to say that it can't happen.
Shoshawna Rainwater (11:37)
Yeah, and I think there's blurred boundaries for the people experiencing dementia around “what is mine? and what is yours?” And I think there's an understandable kind of turfiness or territoriality around like, “no, this is my space. This is where I go to retreat. Why are you in my things?”
Ann McQueen (11:54)
Mm-hmm.
Shoshawna Rainwater (11:54)
Even if it's a shared space, I agree with you, that can be a hard concept. I know that there's a higher price point for a single room, which is also sometimes just how the decision gets made, too, is affordability and what's affordable.
Ann McQueen (12:08)
Long-term care is so expensive.
Shoshawna Rainwater (12:12)
Yes.
Ann McQueen (12:13)
And a lot of people, eventually, even if they have some money to start, they spend down and end up in a situation where they're using Medicaid.
Shoshawna Rainwater (12:24)
And that is a shared room experience I think for most people? Or…
Ann McQueen (12:28)
Often it is. I think it really depends on the building. There are some buildings that are designed for everybody having an individual room. I think that more often the reason why most memory care communities are licensed as “residential care” is because that affords them that option. And just to clarify, adult foster homes don't have the option for a memory care endorsement.
Shoshawna Rainwater (12:57)
Okay.
Ann McQueen (12:58)
They just are what they are. And sometimes adult foster homes are secured and sometimes they're not. So that's something that a family needs to be really aware of if they're considering having a loved one move into an adult foster home. What's in place to keep elopements from happening?
Shoshawna Rainwater (13:20)
Yeah, I've long kind of thought that an adult care home is a great option for people with dementia who do not have significant nighttime wakefulness or really strong exploration…
Ann McQueen (13:37)
Mm-hmm.
Shoshawna Rainwater (13:38)
… slash exit-seeking kinds of manifestations because it's typically the same caregiver/owner/proprietor person every single day. They need to be able to sleep so they can't be up all night with a resident, whereas in memory care, they are staffed for that. And the fact that my mom is up all night is part of why she's in memory care, frankly, because the staff can accommodate that.
Ann McQueen (14:03)
Yeah
Shoshawna Rainwater (14:04)
And then also in an adult care home, I think it is more challenging to design a single home setting to be completely exit safe or to prevent that behavior. And if a person does exit and you've got one caregiver on, they can't be running down the street to try to find the person who's left…
Ann McQueen (14:26)
Right.
Shoshawna Rainwater (14:27)
…and leave for the residents by themselves.
Ann McQueen (14:29)
Yeah. I think you hit on something that's really important and you mentioned, you know, knowing the person: thinking about that person's identity is always really important--how they see themselves or have always seen themselves, and how that manifests in the way that they interact with the world. I can't emphasize enough my hope for families that when they feel “oh, like maybe we're approaching the time when we might need to consider this,” that's when to go and start investigating.
Shoshawna Rainwater (15:06)
Yes.
Ann McQueen (15:07)
It's kinda like looking for colleges in a way. Like you get on a campus and you think, “this just feels right to me.” Give yourself that opportunity to go visit places and have that feeling. Or “his just doesn't feel like it's gonna mesh with who dad is.”
Shoshawna Rainwater (15:30)
Yeah, that's true I think, Ann, because every facility kind of has its own tone and tenor …
Ann McQueen (15:35)
Absolutely.
Shoshawna Rainwater (15:36)
It is a good use of your limited bandwidth to do this research upstream. Also, what's true is that the options that you have will also be limited by the time crunch that you're under to make the decision. And so doing things before you are in that acute crisis mode, it reminds me of that saying, like, “it's always going to feel too soon until it's too late,” which is, I think, Ira Biox’s; he's speaking about it in terms of advanced care planning. But I think it can be applied to a lot of things in our lives.
Ann McQueen (16:08)
Oh, absolutely.
Shoshawna Rainwater (16:10)
And have a good sense of the top one or two places that you have toured that you feel like would be the place that you would want your person to be. And also the reality of recognizing there can be long wait lists. That's the other factor here that we haven't touched on.
Ann McQueen (16:26)
Or waitlists for a certain type of room or a single room.
Music transition
Ann McQueen (16:40)
I wanna talk a little bit about when a family has decided that they are ready to tour, what to look for and what to ask. So, I would encourage, go in at a, you know, normal time of day, but don't call ahead.
Shoshawna Rainwater (16:57)
So this is in the case of tours of larger facilities such as Memory Care, Residential Care or Assisted Living tours, not Adult Care Homes or Foster Care Homes. Those are settings where calling ahead and scheduling a time with the person in charge is more appropriate so that you don’t interrupt them in the middle of giving care to a resident or residents. But for Memory Care, RCFs, or ALFs, it sounds like, Ann, people can drop in and they don’t have to announce themselves ahead of time.
Ann McQueen (17:32)
Show up unannounced and just see what it feels like. Is there chaos? Are there people doing things? What does it seem like? And does the feeling that you're getting when you just walk in unannounced mesh with what you think your loved one would want or you know, do well in?
Shoshawna Rainwater (17:56)
Mm-hmm.
Ann McQueen (17:57)
You will almost always be, with the exception of adult foster care homes, if you go into an RCF or an ALF you will get “toured” by a community relations person and that person's job is to show you all the best things about that facility.
Shoshawna Rainwater (17:40)
Mmm-hmm.
Ann McQueen (17:45)
Spend as little time with that person as you can, because they're gonna show you what they want you to see. But when you go in, ask if you can talk with one of the direct care workers. Or if you see somebody who's serving coffee or doing something like that, say, “oh, you know, I'm considering maybe having my loved one lived here. What do you like best about working here?”
Shoshawna Rainwater (18:45)
Mmm.
Ann McQueen (18:46)
“What's the hardest thing about your job?” And just seeing how that person interacts is gonna be important. Eat a meal there, because food is really important, no matter what age or whether you have dementia or not. For most people, food is important. Make sure that if the building has a memory care neighborhood, and a non-memory care neighborhood, make sure that the food that's going into the memory care neighborhood is exactly the same food that the non-memory care is getting. They should have the same choices, they should get all the same desserts, they should have all the same offerings.
A lot of people will make the argument, “oh, in memory care they're not gonna remember if they had the cheesecake or the ice cream. So, it's fine to just give them the ice cream.” If anything, a person with dementia needs and deserves those choices even more, because so many choices have been taken away from them by dementia.
Shoshawna Rainwater (19:51)
It's a really great point.
Ann McQueen (19:54)
Ask about what are your staffing ratios at different times of the day and make sure you clarify that you want to know the direct care staffing ratios. Some buildings will quote you a staffing ratio based on all of the staff that's in the building, so they're counting the cooks, they're counting the maintenance people, they're counting the concierge. And they'll say, “oh, we have, one staff for every four residents.” Is that direct care staff?
Shoshawna Rainwater (20:26)
So, using that term “direct care staff” is the key question?
Ann McQueen (20:30)
Or caregiving staff, yeah.
Shoshawna Rainwater (20:32)
I would not have thought to ask that in that way.
Ann McQueen (20:35)
And ask at different points in the day, especially if your loved one is a person who's awake at night or awake at odd hours
Shoshawna Rainwater (20:44)
Mm-hmm.
Ann McQueen (20:45)
They'll probably give you the ratio during the day shift, which is gonna be the best ratio,
Shoshawna Rainwater (20:50)
Ah, okay.
Ann McQueen (20:51)
… and not the ratio at night. Ask them what kinds of life enrichment activities go on within the memory care community. One thing you could ask is: “do you have a designated activity director or activity life enrichment coordinator?” or “an activities person for the memory care? and how many hours a week does that person spend doing activities in the memory care?” A lot of times in buildings that have both environments, they have one activity director, and that person spends the majority of the time in the non-memory care area. And they might come over and do a few things in the memory care.
Ask to see an activity calendar and look at what's on it and make your own judgments about whether you think the activities are appropriate for someone like your loved one. If it relates specifically to that resident population, that's something you want to look at. Activities need to be person-centered.
Shoshawna Rainwater (22:00)
Yeah.
Ann McQueen (22:01)
If you are looking at a memory care, a good thing to ask is, “tell me what you do when somebody starts to seem nervous or agitated or uncomfortable? How do you react to that?”
Shoshawna Rainwater (22:17)
Mm-hmm.
Ann McQueen (22:18)
If the staff says, “oh, well we give them a basket of warm towels to fold.” If that's the answer for everybody, that's not good. If they say, “Well, you know, we have one resident who loves a basket of warm towels to fold, and that usually calms her down.” That's okay. If they say something like, “well, first we just go up to the person and try to kind of connect with them and see where they are,” perfect. Good answer.
Shoshawna Rainwater (22:43)
Individualized response, yeah.
Ann McQueen (22:47)
Yeah. You can ask questions like, “you know, if someone seems to be having a hard time and getting agitated or aggressive, what's your philosophy on medication for that person?” There there are a fair number of facilities that as soon as people display these challenging behaviors, there's a call to the doctor. “We need a medication for this.” Versus “what kinds of non-medication things do you try before you make that call?”
Shoshawna Rainwater (23:20)
Yeah.
Ann McQueen (23:21)
So those are important things. There's a site that the Oregon Department of Human Services has where you can compare licensing, that gives information on all of the license setting types, their surveys, whether they've had conditions on their license. You should absolutely look at that; look at their licensing history, look at their adult protective services history, and how many substantiated neglect and what level you know that facility has.
Shoshawna Rainwater (23:54)
I think as we move to concluding here, one last question for you, Ann. If a Hope Floats listener is listening right now, feeling really guilty, feeling exhausted, feeling depleted, feeling concerned about making the wrong choice. What is one truth about this dementia journey or experience you want them to be able to hold on to today? Is there anything hopeful that we can instill for our community as we conclude?
Ann McQueen (24:29)
I don't think there's just one right choice. There are a lot of different options out there for care. And I think the more that people can embrace that they are doing the best they can in the moment, the better off they'll be. Nobody is perfect. Dementia brings out the imperfections in all of us. And rather than thinking, “my gosh, did I make the right choice or did I make the wrong choice?” Try to focus on the fact that there are multiple good choices, but none of those is perfect. Caregivers are trying to find something for their loved one that–an environment or a home care worker– who's as good as they are. Nobody's gonna do as good as you.
Shoshawna Rainwater (25:28)
Nope.
Ann McQueen (25:29)
You love that person. You know that person, you've known them for a long time. The best you can do is impart as much knowledge and information about your loved one to that caregiver or those caregivers. If you place somebody, go visit and get to know the caregivers and give them encouragement.
Shoshawna Rainwater (25:56)
Yes.
Ann McQueen (25:57)
And tell them little wonderful stories about your loved one and encourage them. That's really doing a lot. But nobody's gonna be as good as you. And that's okay. I hope that answers the question.
Shoshawna Rainwater (26:12)
Yeah, it does. Ann, I just so appreciate all these morsels today--the inside scoop, it feels like– for helping families be informed about what to ask, what to look for, and how to advocate.
Ann McQueen (26:27)
And demand good care. I think we've become accustomed to mediocre care in these environments. And that's not good enough. We need to set our expectations high and we need to let facilities know in a kind and firm way when things are not okay. We need to demand better from the system. In the resources I'll include the Licensing Complaint Unit, the Ombudsman's Office. There are ways to get your voice heard and that's really important. Don't settle.
Shoshawna Rainwater (27:06)
Yeah. Well, Ann McQueen, thank you so much for your time and your wisdom today and for helping support the Hope Floats community. We deeply appreciate it.
Ann McQueen (27:18)
I wish all the caregivers out there all the best and thank you, Shoshawna, for your awesome questions.
Shoshawna Rainwater (27:24)
We'll talk to you again soon, listeners. Thank you.
Shoshawna Rainwater (27:34)
I know how much you're caring, and I'm honored to be part of your journey. If you found today's episode helpful, please subscribe or share it with another caregiver who might need to hear this information. You can find more resources and past episodes of Hope Floats at www.rainwaterconsultingpdx.com
I'm Shoshawna Rainwater. Take what you can use from our conversation today, and leave the rest for whenever you might be ready. Please remember to honor the work that you're doing, and more importantly, honor yourself. I'll be here with you next time.
Disclaimer: The information shared on Hope Floats is for educational and supportive purposes, and is not a substitute for professional clinical advice or a therapeutic relationship.
