Understanding Long-Term Care Options in Oregon with Dr. Ann McQueen (Part 1)
Part 1 of this Oregon-centric conversation features insights on choosing the right dementia care environment, understanding resident needs, and advocating for quality care. Hope Floats host Shoshawna Rainwater speaks with Gerontologist and older adult advocate Ann McQueen about practical tips for families navigating memory care options and how to make informed decisions that prioritize comfort, safety, and dignity.
Resources and Links
Oregon’s Long Term Care Facility Licensing Search Tool
Aging and Disability Resource Connection (ADRC)
ADRC Facility-based services and supports page
A Guide to Oregon Adult Foster Homes
Oregon Care Partners (education site for caregivers)
Connect with Ann McQueen:
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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 (00:26)
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.
Today we're discussing a topic that so many families navigate often with a lot of questions and uncertainty: how to find the right long-term care setting for the people we love? Because this topic is so big and important, I've broken this interview into a two-part series. Here in Part 1, we're going to start with the basics, laying out the map of what long-term care looks like. We'll be using Oregon's specific system as our guide and case study. But if you're one of our listeners from outside of Oregon or even outside of the U.S. there is still value in listening to this episode. While local labels and state regulations differ, the core levels of care, facility models, and overall landscape work similarly pretty much everywhere. Understanding how these pieces fit together in Oregon can give you a clear blueprint to evaluate the options wherever you or your loved one might live.
And to help us make sense of it all, I am joined by the incredible Dr. Ann McQueen. Ann has spent the last 30 years working with and on behalf of older adults across almost every corner of the field, from hands-on facility work and college teaching to managing statewide policy, protective services, and facility licensing. She holds a Ph.D. in gerontology, but beyond her vast expertise, Ann's work is deeply heart-centered. She's passionate about safety, dignity, and communication, especially for people living with dementia. Ann brings so much clarity, wisdom, and warmth to today's conversation.
Let's dive into part one with Dr. Ann McQueen. Ann, welcome to the show.
Ann McQueen (02:52)
Thank you. It's great to be here with you.
Shoshawna Rainwater (02:57)
Really glad to have you today. I want to jump in by talking about a challenge that I see often in my clinical practice, which has to do with families coming to a crossroad of needing to make a decision about care location or a move to a care setting. And that often co-occurs with a crisis. So, say a parent with dementia had a fall, or the spouse had a fall, or the dementia diagnosis is progressing rapidly. And when a family is feeling overwhelmed by that sheer volume of options that we have in Oregon, where do you recommend families begin? How do they begin to sort out the best options?
Ann McQueen (03:49)
That's a great question. I'd like to go back to the beginning of that question and before I answer the actual question, really encourage families to think about the possibility of this happening before they get to that point. Because I think that when families go into this decision with knowledge about what this decision means and what options are available, they can make better choices or even choices just that they feel better about because they've had time to do some research and be picky. When you go into this decision process in crisis, a lot of times it's “how do I keep my loved ones safe for the next twenty-four hours until I can get them into whatever placement is going to hopefully keep them safe after that?”
So, as we talk today, I'll try to answer questions both from the perspective of if you are able to consider some of these things before a crisis happens, as well as okay, when you're down to the wire, what are the most important things to consider? And maybe if families are you know feel a little more comfortable with how to go about this, that won't be so scary to think about doing it early on or earlier than when a crisis happens.
Shoshawna Rainwater (05:30)
Yeah.
Ann McQueen (05:31)
So that said, if a family's in crisis, I think it's important to know, in Oregon, what's out there, specifically for a person who's experiencing cognitive challenges, memory loss, dementia, whatever term you decide to use. There are basically three main types of long-term care living environments in Oregon that are licensed through the Aging and People with Disabilities program, which is part of the Oregon Department of Human Services. And those are skilled nursing facilities, which people are probably pretty familiar with, Assisted Living and residential care communities and adult foster homes. and there are some nuances within each of those. So, I'll go through and point out some of the defining features of each of those.
Shoshawna Rainwater (06:33)
Great.
Ann McQueen (06:33)
Nursing facilities or skilled nursing or nursing homes, they go by lots of names. They're all referring to skilled nursing, nursing homes, nursing facilities. These are facilities that have an RN on staff twenty-four hours a day, seven days a week, so there's always nursing staff available. So, for people who have medical conditions that require that high level of clinical care, that may be a factor in deciding, “oh, I think this is the best environment.” They do tend to be the most institutional of all of the long-term care settings, partially because there is so much of a clinical focus; also partially because the majority of the rules and regulations for nursing facilities or nursing homes are set by the federal Centers for Medicare and Medicaid or what people might have heard of as CMS.
Nursing homes are able to accept Medicare, which is the insurance program for people 65 and older for some of their services, as well as Medicaid, which is the financial safety net program for folks who can't afford to private pay for care over the long term.
Shoshawna Rainwater (08:06)
Mm-hmm.
Ann McQueen (08:06)
So, nursing homes, more clinical, nursing staff. In Oregon, we have some additional rules and regulations that have to be followed, including a staffing ratio, which not all nursing homes have across the country.
The other defining feature of nursing homes is that the direct care staff --those people who are providing the assistance with bathing, dressing, using the restroom, eating, all of those things-- are CNAs or certified nursing assistants; they have that certification. They have to have that certification working in a nursing facility according to federal regulations. None of the other facility types in Oregon have a requirement that the direct care staff are CNAs or CMAs, which is a Certified Medical Assistant, so someone who's passing medications.
The CNA training, has a certain number of hours of training that a person has to go through to receive that certification. There's an emphasis on clinical aspects of care. So, it makes sense that in an environment where there's more of a clinical focus you have more nursing hours generally, more clinically trained staff.
Shoshawna Rainwater (09:40)
Sure.
Ann McQueen (09:41)
The next category is the assisted living and residential care. Now technically, these are two different licenses. Most rules and regulations exactly the same in both environments. The only difference is in terms of kind of the physical plant. So when you hear the word assisted living or residential care or various other terms that describe this kind of living environment, they differ from state to state. Unlike nursing homes that are primarily federally regulated, assisted living, residential care, those kinds of communities and adult foster homes are all state regulated.
So, all the rules and regulations vary according to the state. And what they're called varies according to the state. And who they serve varies. So, it's a little bit more like the Wild West. Whereas with nursing facilities, nursing homes, there's a level of consistency because it's the federal government that's regulating them.
With assisted living and residential care, the main difference is that in assisted living facilities, residents have their own rooms and they have their own bathrooms and they have a kitchenette of some kind. In residential care, again, pretty much the same rules in terms of the care part, but in residential care there can be shared rooms and bathrooms and there's no requirement of a kitchenette. And I should mention that all of these settings--nursing homes, assisted living, residential care, adult foster homes--all of these licensed settings provide basic things like room and board, meals, those kinds of things. So, your loved one is going to get meals and snacks in all of these environments. Some facilities have a menu of services that people can choose from. Some have sort of tiered services like Tier 1 includes all of these things or Tier 2 includes all of these things.
Generally, in assisted living and residential care there are different levels of care and it may be that the facility says “well, you know, your loved one needs assistance with medications and you know bathing three times a week and whatever that puts them at this level of care or they may charge for individual things.
Shoshawna Rainwater (12:24)
Yeah.
Ann McQueen (12:25)
So that's something to take into consideration. Same with adult foster homes, there are different levels of adult foster home care, and we'll talk a little bit more about those. But for assisted living and residential care, if there are assisted living and residential care buildings, facilities that have what's called a “memory care” endorsement. So, this is a set of rules and regulations on top of the base assisted living or residential care license that are specifically for folks who are experiencing cognitive challenges.
Now there are a lot of people with and without dementia diagnoses who live in assisted living and residential care that doesn't have a memory care endorsement. And sometimes they do just fine. because facilities have different things in place that may serve a specific population. And because they're state regulated, they all have their own flavor. So, it's always really important to go and visit a building and I'm sure we'll talk more about that.
Shoshawna Rainwater (13:45)
Mm-hmm.
Ann McQueen (13:45)
But I think one of the things to keep in mind is if you are looking for a spot for a person who has cognitive impairment. Having that memory care endorsement on a license does a few things. It requires some additional training for staff, which is a good thing.
Shoshawna Rainwater (14:08)
Mm-hmm.
Ann McQueen (14:09)
It requires that there is a secured area, or a locked area, which can be a good thing because, as your listeners know, looking around, wanting to go investigate new places and new things is something that happens with people who have cognitive challenges. There are some buildings that are all memory care beds; the whole facility is basically secured. And you know they have a memory care endorsement on the entire building.
Shoshawna Rainwater (14:46)
Okay.
Ann McQueen (14:47)
Sometimes it's an individual cottage or an individual building that's on a campus. Like maybe there are three buildings of five that are not secured and two that are and maybe have that memory care endorsement. So, it can look in terms of the physical plant, it can look a variety of different ways. But any time a person is in a memory care, that means that they're in a secured environment if they have that memory care endorsement on their license from the state.
Shoshawna Rainwater (15:27)
Mm-hmm.
Ann McQueen (15:28)
And, like I said, there is some additional training, some additional physical plant requirements, some additional rules and regulations that that go along with those settings.
Shoshawna Rainwater (15:39)
I was gonna ask, does a person need to have a diagnosis of dementia or cognitive impairment on their what's called in medicine the “problem list” or the diagnosis list in order to be admitted into a memory care unit?
Ann McQueen (15:55)
Yes. In order to live in a memory care in Oregon, a person has to have a dementia diagnosis. And, once in a while if there's a couple and one member of the couple doesn't have a dementia diagnosis, but the other member of the couple does, I think they can apply for and receive an exception if they want to continue to live together.
In Oregon all of our rules and regulations related to older adults and people with physical disabilities go back to this central statute, which is ORS 410, Oregon Revised Statute 410, that gives older adults and people with disabilities the right to choice, independence and dignity. And every rule and regulation that we put into effect, long-term services and supports, in-home care, all kinds of things, they all feed back to that. The main idea is how do we maximize the choice, the independence, and the dignity for people who are older adults or experiencing a disability? And I would add the statute doesn't have this, but I would add safety to that.
Shoshawna Rainwater (17:29)
Yes.
Ann McQueen (17:30)
We're focused on safety, but how that balances with self-determination and being able to maintain a quality of life.
Shoshawna Rainwater (17:42)
Yeah, I mean this is the existential question, I think, in dementia is how do you balance autonomy and independence with safety? And it’s hard to be independent and have dignity if your basic safety isn't met. Right? And so, it's yeah, trying to find this balance is so hard.
Ann McQueen (16:46)
Yeah. Safety is like that foundation of the house. You don't see it necessarily, but if the foundation is cracked, it doesn't matter how pretty the wall color is.
Shoshawna Rainwater (18:11)
Exactly. It has to be attended to. The other thing I might say before we leave this idea or this question This is another reason, Ann, where I stand by this perspective I have, which is diagnosis matters. And earlier diagnosis matters because you might imagine there are families who have not been able to get a diagnosis or who have declined to pursue a diagnosis and then find themselves needing to relocate their person. And the best setting for that individual might be memory care because of all of the behavioral and brain change manifestations require that kind of setting and their person doesn't have that diagnosis and then there's a scramble on top of all the other stress to find the right next place. There's a scramble to like, “well, how do we get this diagnosis now?” And another reason I say this practically every episode, I feel like a broken record, but diagnosis matters.
Music transition
Shoshawna Rainwater (19:17)
So, let's talk a little bit about this third category of adult foster care homes.
Ann McQueen (19:22)
Okay. So adult foster homes or in Multnomah County they're called “adult care homes.” Multnomah County has the ability and has chosen to license and regulate the adult care homes or adult foster homes in Multnomah County through their own program. What that means is that in Multnomah County they have to follow all of the state rules and regulations, but they can also add on a layer of county regulations as long as they don't lessen what the state requires.
For the most part, the environments are basically the same whether you're in Multnomah County or out of Multnomah County. And the primary difference with adult foster homes is that they are usually a single-family home with five or fewer residents. And they have different levels of licensing according to the intensity of the level of care they can provide. And that level that an adult foster home or adult care home level of people they can serve has to do with the experience and credentials of the owner or the proprietor as well as their licensing history and things like that. So, some adult foster homes can serve quite high levels of care.
Shoshawna Rainwater (21:00)
Yeah.
Ann McQueen (21:01)
One thing that I will mention, because we talked a little bit about staffing ratios in and nurse presence, nursing hours in nursing facilities, assisted living and residential care don't have a minimum number of nursing hours that are required. Neither do adult foster homes. So, in assisted living and residential care, it says there has to be a nurse available to do certain things. But some facilities might have a nurse there 20 hours a week. Some facilities might have a nurse there 40 hours a week. Some might have combinations of RNs, registered nurses, and LPNs or licensed practical nurses. But facilities can kind of make those decisions on their own when they're residential care and assisted living.
In adult foster homes, they just have to have a nurse they can consult with.
Shoshawna Rainwater (22:04)
Mm-hmm.
Ann McQueen (22:05)
That nurse doesn't necessarily have to be in the building any number of hours. If you look at it as a continuum, the nursing piece, nursing homes have a requirement of this constant nurse on site. Assisted living and residential care have a requirement of some amount of time on site, but they're, assisted living in residential care can have six or more residents has to follow the assisted living or residential care rules. So, there are some ALFs and RCFs out there that have 20 residents and some that have 200. So there has to be some flexibility built into you know how many nursing hours.
Shoshawna Rainwater (22:49)
Yeah.
Ann McQueen (22:50)
But it's a good question to ask when families visit. “How many hours a day is there a nurse here? Is there a nurse here on the weekends? How many hours a week?” however you want to ask that question.
Like I said, adult foster homes have to have a nurse on contract that they can consult with. Relatedly, assisted living and residential care do not have direct care worker staffing ratios that they have to follow, like Oregon nursing homes do. In the regulations it says that assisted living and residential care communities have to staff “to meet the scheduled and unscheduled needs of residents.”
Shoshawna Rainwater (23:37)
That sounds pretty wide open.
Ann McQueen (23:39)
I don't think I'm saying anything disparaging or not truthful about the fact that these assisted living and residential care facilities, the majority of their expense is staff.
Shoshawna Rainwater (23:55)
Yeah.
Ann McQueen (23:56)
So, it's a tendency for some facilities to have challenges with having enough staff at times.
Shoshawna Rainwater (24:06)
Yeah.
Ann McQueen (24:06)
I think part of it also is with a person with dementia, you can't predict …
Shoshawna Rainwater (24:11)
Right.
Ann McQueen (24:12)
… what they're gonna need one day versus another day. So, it's very hard to schedule staff when you don't know, gosh, on a Tuesday at ten AM it just so happens that half of the residents really need something.
Shoshawna Rainwater (24:29)
Yeah. Talk about unscheduled needs. Yeah. It's all unscheduled it feels like in the landscape of dementia.
Ann McQueen (24:35)
Assisted living and residential care communities in Oregon have to complete what's called an ABST, which is an Acuity Based Staffing Tool. And they can have their own version of one, they can use one that the state provides; but basically what it does is it goes through sort of the common types of needs for care that people have, like toileting, helping somebody in the restroom. And the facility fills out, you know, how long does this take?
So, what happens is they have this spreadsheet of some kind that looks at all of the known needs that a person has and how long they take. And those spreadsheets add up this amount of minutes here and this there and that's supposed to give them an idea of how many staff they need to have in order to meet those needs.
Shoshawna Rainwater (25:41)
There's a calculus there, yeah.
Ann McQueen (25:43)
Yeah. So that's part of what they have to do. In adult foster homes, they don't have something like that. However, because adult foster homes can only accommodate five or fewer residents, they always have to have a staff member in the home.
Shoshawna Rainwater (25:59)
Right. Your staffing ratio is pretty determined there. Yeah.
Ann McQueen (26:04)
You're never gonna find a more than one to five ratio.
Shoshawna Rainwater (26:09)
Yeah. I think that's a really important distinction about that setting.
Ann McQueen (26:14)
It is. And another distinction is that in many residential care and assisted living communities, direct care staff is only providing care. They're not doing housekeeping, they're not cooking meals, they're not doing activities. In an adult foster home, that workers tasked with all of those things. So, they're more of a universal worker.
In some foster homes, they might have two people on at the same time. I don't think that's common. Or they might have someone who comes in and, “Oh, I'm gonna cook the meal so that this direct care worker can be spending time with residents.
Shoshawna Rainwater (27:00)
You know, Ann, I was curious about the MCU endorsement, memory care endorsement. Do those facilities have a minimum staffing ratio or staffing expectation?
Ann McQueen (27:13)
No.
Shoshawna Rainwater (27:13)
So, memory care neither?
Ann McQueen (27:16)
No.
Shoshawna Rainwater (27:17)
That's dependent on both the unscheduled and scheduled needs of residents. Ooh.
Ann McQueen (27:22)
Yeah. So that part of the of the rule that I mentioned--the scheduled and unscheduled needs--that part of the rule is in the base license part of the rules and regulations. So, it covers assisted living and residential care with and without memory care endorsements. So that is the rule that applies to the base license.
Ann McQueen (27:48)
Yeah, there's no staff ratios related to memory care. I think some of the problems that we see in those settings could be mitigated by having more staff.
Shoshawna Rainwater (28:01)
I would say more staff and specifically better training for those staff about some of the challenges that come up.
Ann McQueen (28:01)
I think that the rules and regulations that are part of the memory care endorsements specifically, but in general, are a minimum that facilities need to follow. The good facilities do more than what's required. They do more training. They staff according to what residents need, not according to some kind of formula in which, every resident gets 2.5 care hours per resident, per day.
Ann McQueen (28:45)
They staff according to the support needs that a person has. Same with training. Even though the memory care endorsement comes with additional training, good facilities are doing more than that. The other thing that I'll mention also, and there's research that backs this up, there's a concept called “consistent staffing,” it's the idea that not just that there is a caregiver who's willing and ready to care for a person, but that on a regular basis it's the same…
Ann McQueen (29:23)
…direct care worker who's providing like “every morning or four or five days a week, it's Mary who goes in and wakes your loved one up. And knows that if she comes in with a cup of steaming hot black coffee, things are gonna go better.
Shoshawna Rainwater (29:43)
Right.
Ann McQueen (29:45)
So, it's not just about having enough staff, it's about having staff that's consistent so that they get to know the residents and they get to know what the residents prefer and there's so much more to it than just, “she got her shower this week,” but, “did she get it the way she likes it?”
Shoshawna Rainwater (30:04)
Yeah, and I think Ann, this is particularly important in the landscape of dementia care because one of the significant and heartbreaking losses in dementia progression is the inability to any longer sort of articulate for yourself what matters to you. And it matters to be known. Good care comes from being known. And if you have five different caregivers, five different mornings. There's no getting to know me as a resident. You don't know my baseline and you don't know what helps me start my day off in a positive way. You could probably have that recorded somewhere in my chart, but I don't trust the people have the time, energy, or interest to pour over every single written detail in my in my care plan.
I need to be known in order to do well in memory care if I'm living with dementia.
All right, listeners. That wraps up part one of today's conversation. A huge thank you to Dr. Ann McQueen for helping us decode the landscape of long-term care facilities here in Oregon. Now that we have the lay of the land, how do we actually choose the right place for our loved one? Make sure to tune in for part two, where Ann and I dive into the essential details of quality. We'll cover what to look for, the right questions to ask, and how to make a choice that will help you gain peace of mind. Thanks for listening to Hope Floats. Please hit the subscribe or follow button so you don't miss part two, and we'll see you in a few weeks.
