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SHN BRAIN Conference: Putting the Resident First: Understanding Dementia from Clinical and Caregiving Perspectives

This article is sponsored by Griffin Living. This article is based on a Senior Housing News discussion with Paul E. Griffin III, CEO and President at Griffin Living; James Mastriannni, Professor of Neurology at University of Chicago; and James Christensen, Memory Care Director at Varenita of Simi Valley. The discussion took place on July 21, 2022 during the Senior Housing News BRAIN Conference in Chicago. The article below has been edited for length and clarity.

Paul Griffin: My brothers and I have been in housing for decades now. We’ve built something in excess of 40,000 houses during that period of time, with the last 10 years focused on senior housing and more particularly needs-based senior housing. Assisted living and memory care are our focus more than independent living.

Memory care is evolving in areas as we know, and probably more isn’t understood than is but we’re excited. It’s an important part of the industry. For our company, what has always mattered to us in all of the houses and families that we’ve built houses for, we always start with our consumer.

For all of the mountains of dirt that we move and force that we put into framing of buildings and all of that, none of that really means anything except that it meets the needs of our consumers. To be successful, we’ve always started with our consumers, really understanding what they need, what they hope to find, what their dreams are and how we can service them.

In this case, that is the aging senior and their loved ones who are their primary caregiver. Usually, it’s a daughter in her 60s, but whatever it is in each family, we want to understand both sides of it and how we can best serve them. Then, we have a reason for being in business.

We’ve invited two panelists that are bringing the conversation from the sides of Dr. Mastrianni, who is a medical doctor and highly regarded research expert in memory care and dementia. He’s here at the University of Chicago. I’m really interested in what he has to say. He also does work in clinics with actual dementia patients all the time.

James Christensen is a highly regarded manager of memory care units. When we asked around and said, ‘Who is regarded as the best hands on with our families and our residents that makes them as happy as they can be, whatever situation they find themselves in?’ James’ name came up and I was really glad he took the time to come and be with us today. I’d like to start with you, Dr. Mastrianni, and what, in terms of dementia, what’s going on with it? What do we know medically speaking, and what don’t we know?

Dr. James Mastrianni: There’s a lot we don’t know, and we probably don’t know what we don’t know. I’ll talk about what dementia is versus Alzheimer’s disease, because I think those terms are sometimes confusing to families and people not directly in the field. You can think of dementia as what you see in the patient.

Dementia is the expression of the underlying disease. We have a specific way that we diagnose it, but think of it in terms of cognitive impairment in a patient that impacts their daily living. They need help or assistance to complete their test, take their medications, get their bills paid. We have another term, an earlier stage of dementia called mild cognitive impairment.

This we’ve known for more than 20 years now and really just getting a good handle on what MCI or mild cognitive impairment is, but it’s a prodromal stage. That means it’s an earlier stage in which you still have a little bit of memory problems, but you’re still completing all your tasks, getting your work done and doing the things that you need to do. That’s the time when we like to be able to diagnose people.

That’s the time where medications and new therapies that are coming along are going to be most effective. In Alzheimer’s disease, it’s a problem of protein handling in the brain. We’re made of proteins and there are specific proteins in our brain, in our neurons, the cells of the brain that are important.

These proteins somehow get mishandled — either they’re not degraded quickly enough, or they get into an abnormal conformation, we call it, and then they start to build up and accumulate. There’s two particular proteins that are important. One is actually a segment of a bigger protein called amyloid beta. The bigger protein is amyloid precursor protein. This is really just 42 amino acids strung together.

When this accumulates in the brain then it clumps and it forms the plaques of Alzheimer’s disease. I’m sure everybody has heard about the Alzheimer’s disease plaques. That’s really what a beta creates. We used to think maybe 40, 50 years ago, that Alzheimer’s disease was something you wake up with and that’s when the disease starts in your brain. We now know that the disease starts 10 or 20 years before you actually manifest the clinical symptoms. A lot of people are walking around with Alzheimer’s disease, developing in their brain, but still functioning normally. What happens then is you get this accumulation of the amyloid beta, these plaques, it reaches a plateau, a high level and then it triggers the accumulation of another protein.

Now, a beta protein accumulates in the brain substance, but outside the cells, outside the neurons. It does cause some change in the local environment and that triggers, within the cell, another protein called tau, that then accumulates and it misfolds and clumps. That’s the protein that seems to be the most important as far as the clinical manifestations of disease. When we start to see a tau increase in neurons in patients, that’s when we see the symptoms of Alzheimer’s.

We see memory problems as the primary feature of Alzheimer’s disease. Why do we see memory as the most typical feature? If we look at where these proteins are deposited and especially tau protein, it starts in an area of the brain that is our machinery for making memories. This is the hippocampus of the brain or within the temporal lobes. They sit right behind your eyes on your temples, but behind your eyes.

That accumulation causes the memory problems that we typically see with Alzheimer’s disease. The memory problems are typically short-term memory. It’s recent memories. If you think about it’s a learning problem because people can still remember the old memories that they stored in their brain years ago, but they’re having trouble putting in new information. That’s the main problem with Alzheimer’s.

As the disease spreads, it affects other areas of the brain and it causes different behaviors, and may cause hallucinations, delusions, and a variety of other features that we see with dementia. That’s what’s going on in the brain and it’s really fascinating these days that we can observe the protein buildup in the brains of patients with special imaging now. We can actually look in real-time and follow those patients.

Griffin: James, you’re actually dealing with these patients. How do we make their lives better?

Dr. James Christensen: I was thinking about this the other day. Look at all the senior living communities out there as ships out to sea: We’re all experiencing the same waves, the same wind, but it’s the setup of the sail and the crew that’s going to help you get to your destination. The crew on the ship are the caregivers and then the passengers are the residents.

How are we going to get to our destination and get there successfully? I’ll start with the crew level. I think it’s about hiring them correctly. I’ll use [basketball] coach “Coach K” of Duke [Mike Krzyzewski] as an example.

He was interviewed years ago. He just kept on winning games, kept on winning titles and a reporter asked, what’s your secret? He said, “I can teach you how to dribble. I can teach you how to shoot. I can’t teach you to be tall.”

He hires for the talent, obviously. In our business the tall equates to the heart. Everybody who works in senior living is there because of your heart and then everything else we can teach. Then, what about the how? How do we get to success in the trenches, at the local level? Coach Lombardi, you guys probably know him or have heard of him, every season he starts with holding a football in his hand, and he’s working with professionals that have been in the league for years. He says, this is a football. He starts with the fundamentals, and then he excels at the fundamentals.

For me, I found success in trying to execute the basics as best as possible, making sure that we’re person-centered. At our memory care community, We’re not task oriented. Sometimes it’s a matter of pulling the team together to say, ‘Hey, slow down, connect’. I know we have a job to do. I know there’s a lot to take care of.

Some of them look at these residents in the lens of their loved ones because a lot of them have come in because they have loved ones in similar situations. Success would be for me just starting at that local level, having that partnership with the Dr. Mastriannis of the world.

Just being able to have that open line of communication, knowing that they have your back, having the logistics and the support.

Griffin: Let’s talk a little bit about how people apparently drift in, with a little more dementia, and it gets worse and more pronounced until maybe it becomes really dysfunctional. As we’re trying to deal with this, both medically and in terms of our care, what do you guys think in terms of, can we help people a little bit more if they’re getting older and more in assisted living and maybe starting to drift into needing memory care.

Do we have hope to help people maybe stay a little more mentally acute for a little bit longer in their life?

Christensen: There have been cases in Dr. Mastrianni’s experience and in my experience where there’s been light at the end of the tunnel for residents. I’ve personally had two cases where I’ve had a resident move from memory care back into assisted living. That was early on in my career.

That gave me hope that we serve a purpose with the structure that we provide, with the programming. I know you’ll probably get into just the lifestyle, the food, and the exercise and all that but it’s amazing what the purpose that we serve and the hope that we can give. Maybe the residents are not able to advocate for themselves or recognize the growth that’s happening, but for sure the families are, the other professionals who are coming in see the difference. That’s definitely been something that’s been amazing.

Mastrianni: Yes, I completely agree. We did talk about these mutual patients because they just had to be, and I do see patients a lot. I just had a patient the other day that basically had that issue. He was very impaired when we saw him a couple of years ago, and he is scoring very low on cognitive assessments, not taking care of himself, not taking his medication, eating poorly.

His dinner was Cheetos and crackers and that was pretty much how he was surviving. His son was trying to help him and keep him managed nutritionally and get his medications, but it was a very difficult task. It wasn’t until the son decided to put him into assisted living with the help of my social worker that we got him corrected. He did go into memory care. Because of COVID we hadn’t seen each other for a long time, and I just saw him the other day and he improved remarkably. His son was even asking me about moving him out of the memory care.

Griffin: You think that relates to just the fact that he was able to change his lifestyle?

Mastrianni: I think it was really somebody who was there, the support, and getting his medications, getting his nutrition.

If we’re talking about the course of dementia, can you change it? Can you alter it? There’s good evidence that you can, with lifestyle modifications that you can do. We recommend these to all our patients, and it depends on staging also. That’s why we say the mild cognitive impairment stage when you’re at that level, that’s a time where you can really start to work on it and slow down the disease process. We don’t have many medications. We’ve had the same medicines for 20 years now for Alzheimer’s disease. There is a new one now, finally, but there’s a lot of controversy around whether it’s effective or not. But you can do the typical things everyone knows, such as getting a good diet. It was just mentioned earlier about the Mediterranean diet, there’s another diet called the MIND diet that’s also good for brain health.

Getting exercise is probably the most important thing, and just 30 minutes a day of a brisk walk even, but people have shown that the more vigorous the exercise, the better the benefit. Some studies that I’ve seen, you can even alter the pathology in the brain if the exercise is very vigorous. Sleep is also important. We tell patients seven to nine hours a night, and there’s a reason for that.

People have shown less or more sleep per night can actually promote Alzheimer’s disease, and multiple awakenings during the night can also promote Alzheimer’s. There’s Alzheimer mice that are engineered and if you poke the mice and wake them up on intervals, they’ll develop more Alzheimer’s pathology.

Then the social engagement and keeping people social and having contact.

There’s old data from distant past people that were in isolation that had poor cognitive scores. Just having a visitor occasionally come in increased cognitive scores in patients. That social contact is really important. You can do those things but early.

Griffin: Of course, with every disease. Your medications that you’re talking about are on the horizon, are they attacking the proteins? Is that the idea? You’re after the plaques or the tau to try and somehow break that down in the cell? Is that the way research is headed?

Mastrianni: Yes, the research is directed at those proteins to try to remove them or eliminate them or prevent them from aggregating or clumping. Most of them are antibody-based therapies. They’re antibodies that will actually interact and pull these proteins out of the brain and that’s the goal.

Griffin: James, on your side and maybe having to do with the sleep cycle, people that are having dementia issues, is stress setting them off and making the symptoms worse and making the disease advance faster? I’m wondering in the memory care wings, I go in and sometimes they’re loud because you just have so many patients and they get upset and whatnot and one disturbs the other.

Could you talk a little about that side? You want a peaceful environment and enough positive stimulation, but not stressful?

Christensen: Sure. My approach is to be person-centered. I like for the residents to feel like they are my only customer that I’m dealing with at that moment. There is an attraction on their end to want to be involved with what’s going on. If I can get that buy-in from the residents and they are the ones who are interested, you get to see the growth because you’ve got the participation. Some of the challenges when the residents are stressed that I found were not talking low to mid-function.

We’re talking to someone who’s pretty high functioning, but they are just stressed because maybe residents will never see a new building as their home because we can’t compete with a place they’ve lived for decades. I can make it feel like home though. I can make it feel loving. I can make sure that they feel like they have control, but if a person is aware that this is not my home, I want to go, or maybe they’re living on some type of memory where my kids, my spouse, my work, or whatever, and they just cannot engage themselves, that’s where the program stops.

If I can’t get that buy-in and that engagement, the disruption, there is no magic bullet when it comes to redirecting a resident. It’s just a matter of just finding team members who can just give that person time, find out what’s going on, and live with them.

I really love living with the residents and the main thing I’m always teaching the team is, slow down enough to just live moment to moment with them.

Hopefully we’re able to maybe soothe some of the agitation or whatever the stimulus is and try to figure out something that can help them move beyond that point because it’s never stopping a resident. If they want to leave, our goal or our mission is not to say, “Hey, stop, you cannot go out here.” It’s to find out, “Why are you moving in this direction?” through dialogue, through being human. I had a resident who just wanted to go because he felt his car was outside and he needed to get to work.

The staff would stop him. That created an entirely different, worse situation. Instead, I would say, “Well, let’s go” and I’d walk him. I’d get him tired and then he’d get to the point where he’d say, “I’m tired. I need to go back.” I’m like, “All right, well, let’s go back.” I’ve accomplished two things or maybe even three. I’ve allowed him to pursue what he thought he wanted to pursue, I got some exercise out of it, and then third, I was able to redirect him.

Griffin: All of our people have the heart to really look at each of our residents and think, “I care about this person. What are they looking for today? How can I help them,” and actually put yourself like their family in their life.

Christensen: I do love a lot of communities. I know they focus on the person, the lifestyle story, and trying to equip us with that information. That’s vital. It’s a weird customer service situation. It’s not a product or a service that I’m doing once and then you hopefully come back. It’s, you’re living with me or I’m living with you. I work where they live. It’s a partnership that you have to have that you have to develop with the families. It takes a village to raise a child, it takes a village to take care of our elders sometimes.

Mastrianni: I’d like to add to that because it’s hard to teach somebody to be empathic. It’s within you. When you build your staff, you have to look for it because I’ve gone through that with my team. I run a memory center. I have a lot of people on my team and one of them has a heart that’s bigger than her physical body and she really is the glue to the memory center.

Having that compassion and, actually, every one of the people that work in the memory center are like that. It’s nice to have that comfort and that’s why patients keep coming back. If you don’t have their trust and you don’t have their sense that you actually want to take care of them and you’re interested in them, they’re not going to stick with you. The same thing in assisted living and memory care, they’re not going to believe what you say if you don’t have that heart.

Griffin: In terms of the medical side of it, we have seniors that are starting to come around and be interested in assisted living. Maybe they’re even becoming our residents.

If they’re developing the proteins, do you sense that that would be something that would be helpful for residents or something that scientifically might want to know in terms of populations, but maybe for an individual it’s more, “Well, just be happy today.”

Mastrianni: What we use, the imaging and all our diagnostics tests, we’re really good at being able to diagnose disease, even 10 years before you actually get the symptoms. In the case of care, in the memory care unit and assisted living they already have a diagnosis. You don’t need to track it at a biological level unless they’re in a clinical trial or some research study. It’s really the care that’s important.

Griffin Living is committed to crafting innovative communities in partnership with community stakeholders, and applying value-driven development philosophy to ensure that properties represent strong investments for the capital partners. To learn more, visit: https://griffinliving.com/.

The post SHN BRAIN Conference: Putting the Resident First: Understanding Dementia from Clinical and Caregiving Perspectives appeared first on Senior Housing News.

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