Category: Dementia

5 Questions With Larry Carlson

Retired President and CEO of United Methodist Communities of New Jersey and innovator in dementia care

Q.Why do you want to reimagine life for people dealing with dementia?
A. After 40 years in this industry, I felt that there must be a better way to provide a dignified and meaningful life for individuals dealing with a dementia diagnosis. One in three seniors dies from Alzheimer’s, more than breast cancer and prostate cancer combined. In the past, aging care corporations put residents in their little areas, and it would be like locking them away. It is not normal for people to live in a unit of 25 people. We were trained to say “no” to things, like to go outside. I want to say “yes.”

Q. What was your inspiration for “Avandell,” the new dementia village you are planning?
A. In 2017 my wife and I visited The Hogeweyk Dementia Village  in Amsterdam, and we thought, “Why isn’t anyone doing this in the U.S.? I wanted a departure from the current model of care, so residents could live in a more homelike environment. At Avandell, there will be 15 cottages where seven people with the dementia diagnosis will live, for a total of 105 people on 18 acres. It is more of a family scale where we can group people with similar values, like music, sports or art. Each house will have seven bedrooms, a kitchen, living room, dining room, porch and den. The cottages will all be in a circle, joined together with breezeways and discreet fences, and there will only be one way in and one way out. Residents can go outside and explore. There will be farm animals, a greenhouse and a butterfly garden. They can experience the weather, because experiencing the weather is normal. There will be heated sidewalks for safety.

Watch the Avandell Video

Q. How will meals be handled?
A. The house will have a budget and residents will decide what to eat for the day. They will go to the grocery store and pick out what they want. Why? Because it is normal to go to the grocery store and cook dinner together. The caregiver and house coordinator will guide the process. It will be a more natural rhythm of life.

Q. What did you have to change about The Hogeweyk model to make it acceptable in the states?
A. The regulations in the United States are made for a “big box” building. By building breezeways to connect our 15 houses, it will allow the building to function as one. It was really working with the Department of Health to get the regulations to sync with what we want to do.

Q. Where does the project stand right now?
There are neighbors who do not want a “depressing” dementia village in their backyard. We won the zoning, but they are appealing it. We have to fight those battles. This project will ultimately be successful, it will just take time and money. It should be noted that a community like Avandell can be built anywhere. We intentionally developed the care model so it could be re-created somewhere else.

Learn more about the development of the dementia village model in Larry Carlson’s book, “Avandell: Reimagining the Dementia Experience”, or on his YouTube Channel.

Guest post by Dr. Tamir Aldad, CEO of Mindful Care

I’m an addiction psychiatrist by training. In my work, I found that access to care was a major issue for seniors experiencing mental illness. In fact, my grandmother was dealing with really bad depression and we had nowhere to take her. That is part of why, in 2018, I founded Mindful Care, the first-ever chain of psychiatric urgent care clinics. We provide care to seniors in independent living, assisted living and skilled nursing communities.

One Definition of Mental Illness

Let’s start our discussion about older adults by talking about mental illness in general. Mental illness is a huge category ranging from depression to bipolar disorder to eating disorders and more. The common denominator is the fluctuation that affects people’s daily living. If someone has changes in their thinking and cognition, their ability to relate to others, and their functioning each day, those all are high criteria for mental illness.

Mental Illness in Older Adults: Underappreciated and Underrecognized

Older adults are more likely than any other age group to have mental illness, due to risk factors such as changes in their physical health; losses of their support system, spouse and friends; lack of a sense of purpose; substance disorders; and decline in functioning ability. Seeing as older adults are a very vulnerable population, but with fewer resources than others, and less likely to seek help, they need lots of attention. Unfortunately, healthcare providers and older adults often mistake depression, in particular, for a natural response to aging. This can lead to providers not screening for or treating it.

The Four Ds of Mental Illness in Older Adults

Here are the “four Ds” we should keep in mind when it comes to recognizing and treating mental illness in older adults:

Dementia: Life-altering loss of cognitive functioning
Dementia affects approximately 10% of people 65+ in the United States, according to a 2022 Columbia University study.

Delirium: An acute, fluctuating syndrome of altered attention, cognition and awareness
Delirium affects an estimated 14% to 56% of all hospitalized elderly patients, 20% of which experience complications while hospitalized directly because of delirium.

Depression: The persistent feeling of sadness or loss of interest that may include changes in sleep, appetite, energy level, concentration, daily behavior or self-esteem, and thoughts of suicide
Depression is increasing in the 65-plus population with suicide rates being a very serious problem, and it needs more awareness and attention.

Demoralization: A psychiatric experience of existential despair, hopelessness, helplessness, and loss of meaning and purpose 
Demoralization requires a certain level of empathy because it stems from despair and hopelessness at not being able to function at the same level anymore.

Many people don’t realize how widespread these symptoms of mental illness are. The two conditions that get neglected the most in the senior population are depression and demoralization. 

Causes and Risk Factors for Senior Mental Illness

Physical disability and changes in physical and cognitive health are a big risk factor for mental illness, as is a change in environment, like a sudden hospitalization or a move to assisted living. Grief is also a very common risk factor.

Other risk factors to watch for are long-term illness, substance abuse, medication interactions, the illness or loss of a loved one, and poor diet or malnutrition.

10 Symptoms of Mental Illness to Watch for in Your Residents

1. Sad or depressed mood lasting longer than two weeks
2. Social withdrawal, loss of interest in things that used to be very enjoyable
3. Unexplained fatigue, energy loss or sleep changes
4. Confusion, disorientation, problems with concentration or decision-making
5. Increase or decrease in appetite; changes in weight
6. Memory loss, especially recent or short-term memory problems
7. Feelings of worthlessness, inappropriate guilt, helplessness, thoughts of suicide
8. Physical symptoms that can’t otherwise be explained: aches, constipation, etc.
9. Changes in appearance or dress, or problems maintaining the home or yard
10. Trouble handling finances or working with numbers

Helpful Mental Health Goals and Interventions

Here are some goals and interventions that can help older adults experiencing mental illness:

 Validate the individual’s feelings

• Nurture a healthy adjustment to their stage of life
• Help promote acceptance of loss — letting go
• Explore and treat “survivor guilt,” which is often present when an elderly person has survived one of their children
• Explore for and treat a deep sense of guilt for wishing a loved one would die
• Foster involvement in life activities as fully as possible — especially exercise, which is not only healthy for the body, but for emotional well-being
• Use reminiscence therapy — discussion of past activities and experiences with another person or group
• Practice an integrated care model, where one person acts in the role of case manager, and the entire team shares information about the older person’s health

Overcoming Obstacles to Care and Stigma

One major obstacle to care is that people think symptoms of mental illness are a normal part of aging. Our culture teaches us to think these feelings are normal, when they’re not. What I’ve found effective with older adults is to not use formal terms like “‘mental illness” or “depression,” as they are loaded words and can have inherent bias. My approach is to treat feelings and validate them. It’s helpful to meet people where they’re at and recognize that these feelings can be embarrassing and hard to talk about. Encourage your team to do so as well.

If you’ve gotten to know a resident and they’re not acting like themselves, alert your team. Most importantly, create an environment where people are welcome however they are and however they feel.

If you have any other questions about mental health in seniors or want to learn more about Mindful Care, please feel free to engage with me at .

At our 33rd weekly sales & marketing roundtable, we shared how we’re feeling this week. We also discussed a plastic wall that was set up by one community to allow residents and family to hug, shown below.

Please join our next roundtable discussion on Thursday, November 12, at noon ET.

For login information, please contact .

June is Alzheimer’s & Brain Awareness Month. To draw attention to memory issues, Jennifer Honeyford, senior director of resident life and performance improvement at The Philadelphia Protestant Home (PPH), is sharing the community’s innovative programs and her personal experience with caring for people with dementia.

Walking in Their Shoes

It’s so important to really understand what life is like for people with dementia. One of the projects we started at the end of 2018 was to increase our staff knowledge of this condition. We surveyed everyone and asked them what they wanted to know, and then, we looked for educational programs that would teach those topics. We found that almost everyone has a personal connection with the disease, as well as a professional one. The staff were really open to the education.

One of the initiatives that came out of the survey was a virtual dementia tour, which we are now licensed through Second Wind Dreams to operate on campus. We are able to offer this sensitivity training program through a grant that was funded through the Ron S! Charitable Fund and the Anna T. Jeanes Foundation.

The tour is basically eight minutes in the world of someone living with moderate-stage dementia. Our staff are assigned a time to come into a room we have set up. They are outfitted with glasses that distort vision. They wear a headset with sound running through it that gives them auditory hallucinations. They wear thick, heavy gloves, which limit their ability to grasp and touch. Finally, they have eight minutes in the room to complete five tasks — which are virtually impossible to complete in that time.

Feedback Has Been Phenomenal

We’ve had about 65 staff members including upper management go through the training, as well as some family members. They describe it as “powerful” and “humbling.” After going through the experience, staff members have said they will never be impatient again. They say things like, “I felt so isolated, so alone. I had no idea how hard it is to have dementia. I will be patient, I will be kind.”

What’s beautiful is that they are experiencing the disease firsthand. The learning is theirs — they are interpreting it for themselves.

If we who have healthy brains can act as if we have dementia, then why can’t someone who has dementia better navigate this condition if we alter their environment? By understanding how confusing and overwhelming life with dementia is, we can look for those things that might be triggering and upsetting and help them to better navigate their daily landscape.

Why I Entered the Memory Care Field

My whole life, I’ve had an overactive imagination. Health care was just a good fit for me — especially dementia care, because you have to be able to enter people’s worlds and see things from their perspective. I started in health care, directing recreation therapy, then I moved into a senior director role. I provide administrative oversight to our recreation therapy and life enrichment departments, including Chapters, the memory care program at PPH. I’ve been here for 22 years, and I feel like I’ve grown up here.

What Residents with Dementia Have Taught Me

I think that what residents with dementia have taught me is to enjoy the simple things in life — to be kind,  genuine and patient.

You have to be able to imagine where they are because you want to be able to understand them and be empathetic to their needs. That’s what excites me most — being able to come up with a solution to a problem. We look at the person’s leisure interests and former occupation to give us cues so we can offer them purpose and enable them to do things for themselves.

One way we help employees from all areas of PPH gain understanding of residents with memory issues is through a certified dementia practitioner (CDP) program, led by four certified on-site trainers, including myself. Fifty staff members from all disciplines have taken the training, which has proven invaluable to them. Read more about the PPH dementia training program here. To learn more about  CDP credentials, please visit nccdp.org.

No matter what we remember or what we forget, we still have that human need for purpose — we need to be seen, valued and heard. I want to treat people with dementia with the dignity and respect that they have earned. They deserve that.

Earlier this week, my entire world was disrupted. I flew to Pittsburgh for the Facing Disruption, Forging Direction conference, hosted by the Presbyterian Association of Homes and Services for the Aging (PAHSA). I participated in discussions about the major disruptors facing our field and came away viewing disruption as a positive force to be embraced. As I look back on the event, I can identify five major disruptions — and new directions that can transform them into opportunities. I wanted to share them with all of you who may not have been able to attend the conference. 

1. Disruption: tighter margins, leaner budgets
Many communities and systems are considering strategies to combat the changing needs of the mature market and increasing competition. This is evident in how communities are repositioning, contract types are changing and affiliations are continuing to develop.

Direction: Collaboration can boost financial strength. At the conference, Presbyterian Senior Living and Westminster Communities of Florida announced their intention to affiliate. Together, they will be the fifth-largest senior living organization in the country.

2. Disruption: a rapidly growing middle market
Forty-five percent of Boomers have no savings toward retirement, which means that most will not be able to afford the typical senior living community.*

 Direction: HumanGood is taking what it’s learned through its affordable housing communities to provide an innovative service to the middle market. We learned about how the brand developed Plaza Roberto Maestas in Seattle, incorporating street art that reflects the local neighborhood; a day care center for neighborhood children; local retail on the first level; and a plaza in the center of the complex that draws a variety of food trucks each day, attracting visitors from the greater community.

3. Disruption: a skyrocketing incidence of dementia
Caregivers already provide 18.5 billion hours of care per year at a cost of $234 billion, and the number of people with Alzheimer’s will more than double by 2050.**

Direction: Presbyterian SeniorCare in the Pittsburgh market has launched its Dementia360 program, which in the words of the organization “pioneers partnerships and collaborations.” The organization has developed a Dementia Care Center of Excellence, with educational programs, residential services, research and population health initiatives. This, along with its comprehensive care management expertise, provided the resources necessary to launch Dementia360, which is a series of tools to support both the caregiver and the person living with dementia.

4. Disruption: a dearth of qualified staff in senior living
The number of 16–24-year-olds in the workforce is expected to decline by 2.8 million between 2014 and 2024, which means that senior living communities could face major labor shortages.***

Direction: Presbyterian SeniorCare and Redstone, both of Pittsburgh,  shared two different models to bring youth in through education, volunteerism and internships. These types of programs introduce high school students to the benefits of a career in senior living, expanding the potential workforce at a grassroots level.

5. Disruption: unique partnerships providing exponential value

Direction: Twin Cities-based Presbyterian Homes & Services is pioneering relationships with payers and primary care/navigation to create a unique model to contain costs and — more importantly — provide the best-quality care to its residents.

I genuinely enjoyed my time at the conference and salute the leaders who came together to openly share their solutions for a common cause. And every day, every session was guided by this passage from Scripture:

“For surely I know the plans I have for you,” says the Lord, “plans for your welfare and not for harm, to give you a future with hope.” – Jeremiah 29:11

I encourage everyone to address disruption head on by taking new directions that will move our field forward.

*Insured Retirement Institute
**Alzheimer’s Foundation
***Argentum Senior Living Workforce Trends 2018

As we head into 2019, we look back on an exciting year for the Varsity blog! Here’s a countdown of our most popular posts for 2018. It’s a potpourri of topics, from serious to humorous to touching. One common thread: innovative ways of helping people age well, from a world-renowned village for people experiencing dementia to LEGOs.

5. Older Adults Experiencing Homelessness Inspired by an experience our president Wayne Langley had passing an underpass in Los Angeles, this three-part series provides insights into how older individuals experiencing homelessness are treated. Read the first installment here.

4. Difficulties in Diagnosing Parkinson’s Disease  In this guest post, Rebecca Evans of geriatric nursing.org discusses the second most common age-related disease after Alzheimer’s, including the lack of a precise screening test and why early diagnosis is so important. Read it here.

3. Remembering Sal J. Molite, Jr.  Derek Dunham, vice president of client services at Varsity, pays his respects to Sal J. Molite, Jr., former president of Edenwald Communities in Towson, Maryland, who sadly passed away in January 2018. He was a true friend and colleague, who had a passion and dedication for the aging services. Read the post.

2. American Hogeweyk — an Interview with UMC’s Larry Carlson Varsity spoke with Larry Carlson, President and CEO of United Methodist Communities, on his fascinating experience visiting Hogeweyk, the world-famous memory support community in The Netherlands. Read the post.

1. Playing with LEGOs Could Help Older Adults Our most-read post of the year came from Robinson Smith, Varsity creative director and lover of all toys and games. Rob discusses Adult Fans of Legos (AFOLS), many of whom are older adults who use Legos to engage in a creative exercise for the mind. Read the post.

That’s our countdown of top posts for 2018! Stay tuned for more fresh perspectives in 2019, and please ">contact us  if there’s a topic or issue you’d like us to cover.

As the number of people living with dementia continues to rise, a wave of memory care construction is sweeping the country, and new bells and whistles are being introduced all the time — yet, what’s really most important in memory care design?

Recently, I asked a volunteer for her point of view. She has led resident activities in a community’s outdated memory care wing for years and is making the transition to running programming out of the community’s brand-new, $18.5 million stand-alone memory care building.

After the volunteer’s first day of leading a resident program in the new memory care center, I asked her how it compared to the former space. Here are her thoughts on what she would keep in the new design — and what she would change:

Keep:
• Privacy: Residents in the new center have their own spacious rooms and baths, with airy picture windows.
• Mood-enhancing lighting: State-of-the-art circadian lighting changes on a 24-hour-cycle to promote better sleep.
• Access to nature: Secure, outdoor courtyards have walking paths.
• Sensory stimulation: A relaxation room offers soft, comfortable seating and aroma therapy.
• Pet friendliness: Residents can have their own cats!

Change:
• Poorly designed programming spaces: To attend a program in the main multi-purpose room, residents have to be escorted
a long way, down hallways and through two secure doors. There’s no storage for craft supplies near where activities
take place.
• Style before safety: The beautiful marble reception counter has a sharp edge, and one of the volunteers promptly
banged her hip on it.
• Impersonal decor: Hall walls are adorned with art chosen by a decorator, but this volunteer would prefer a changing
showcase of artistic creations by residents.
• Unbranded exterior: Outside, the main sign simply reads: “Memory Care Center.” The generic name feels cold, impersonal
and uninviting.

To sum it up, this volunteer appreciated many of the center’s state-of-the-art features, but there were gaps in function that made it harder for people to connect. The overall lesson here? When designing a new service or building, it’s valuable to elicit feedback from volunteers, along with other stakeholders. They often have years of experience and may think of ideas that others haven’t considered. The bottom line is this: From this volunteer’s point of view, high-end decor and state-of-the-art innovations are important, but the most important element in memory care design is the human element.

Larry Carlson of United Methodist Communities is known as a thought leader in the aging services space. He’s always pushed his team and his communities to be more resident-focused and to come up with creative ways to meet their needs. Recently, Larry spent some time in Europe. While there, he visited the world-famous Hogeweyk memory-support community in the Netherlands. Profiled by CNN, Hogeweyk has become a model for dementia care that many American providers have dreamed of reproducing in the States. Its community-based design, open and spacious amenities and focus on daily living have made it a model for the rest of the world.

We took a minute to sit down and chat with Larry about his experience and what he thinks the future of memory-support communities might look like.

Varsity – How did you first hear about Hogeweyk and become interested in the work being done there?

Larry – In 2013, CNN profiled the community in an excellent 20-minute segment. Since then, I’ve always wanted to visit and see the community firsthand. (For reference, here’s a link to that piece https://www.youtube.com/watch?v=LwiOBlyWpko&app=desktop.)

Varsity – We know that Hogeweyk is centered on memory-support services. But, it seems it would be difficult to create such an environment for those with severe memory loss.

Larry – On the contrary! Residents don’t come to Hogeweyk because they are just mildly confused. Every person living in the community has a severe memory issue. Forty percent of the residents utilize some kind of mobility assistance. This isn’t a community created for those with onset dementia issues. It’s built to help those that are living with severe dementia.

Varsity – Wow! That’s not what would we would have expected at all. How can they care for such a population in a free and open environment like Hogeweyk?

Larry – Residents live in homes with six or seven other people. There are 23 such homes at Hogeweyk. Each resident has their own bedroom, sharing a kitchen and general living space with others. Team members are only in the homes between 7 a.m. and 10 p.m. each day. As the residents move about the community, every team member is there to assess their needs and ensure safety. At night, residents are monitored with advanced technology. Rather than keeping a team member in every home overnight, they utilize microphones to listen for movement and issues, deploying staff as needed.

Varsity – It seems like Hogeweyk takes the idea of ‘person-centered care’ to a whole new level. Can you describe the environment and vibe within the community as you toured?

Larry – While ‘care’ is important, it’s not the most important phrase in the lexicon at Hogeweyk. The entire team is focused on a single mission: ‘normalize life.’ Every team member’s goal is to provide as normal a daily living experience as possible for every resident. If a resident wants to go grocery shopping, help with laundry, clean the house or just go for a walk, they are allowed to do that. No one chases after a resident who wanders away on their own. Within the community, residents are safe and allowed to explore as they like. At Hogeweyk, they care for their residents by ensuring their independence.

Varsity – This sounds like an amazing community but also one that would be a regulatory and risk management nightmare here in the States. How do they handle these issues?

Larry – Communities like Hogeweyk are mostly government funded and heavily regulated. That provides some layer of protection. The Dutch have a saying, ‘Don’t shoot the bear until you see the bear.’ This means that you don’t restrict an activity or area because it could be a problem in the future. For instance, there was a balcony with a regular height handrail. My inner administrator was immediately fearful that someone could fall over such a railing. When I posed this question to my Dutch counterpart, he noted that no one has ever fallen, so why would they change it now? It’s definitely a different mindset than what I’m used to.

Varsity – With this in mind, do you think there’s a way to bring a Hogeweyk-type community to the United States?

Larry – Absolutely! It’s become my goal to do so. We’ve reviewed the staffing requirements and realized that Hogeweyk’s staffing is within a single FTE of the staffing we would provide for a similarly sized community. Also, the monthly cost to reside at Hogeweyk is nearly identical to what UMC charges in many of our communities. Yes, there will be some regulatory hurdles, but the model is completely viable, and we want to make it happen at UMC.

Varsity – Thank you so much for sharing your experiences and thoughts with us and our readers! Do you have any final thoughts you’d like to share?

Larry – I really appreciate this opportunity as well! I’d encourage all of my colleagues and counterparts to learn more about Hogeweyk. Even if they can’t create a replica of the services offered, I’d implore them to think beyond person-centered care when it comes to memory support. Think about how you can normalize life for each resident. That simple change in thought process is the first step in the Hogeweyk model.

Music has been shown to enhance brain function, reduce stress and build relationships.

And the more connected people feel to the music, the better. One study found that  seniors who sang along to tunes scored significantly better on cognitive tests than those who just listened.

In LA, a group of seniors has even formed its own band. “The Fifth Dementia” is made up of musicians with degenerative diseases and high school students.  Watch the video to see how they find a common language.

The band is part of Music Mends Minds, Inc., an organization created by Carol and Irwin Rosenstein when Irwin, a musician, was diagnosed with Parkinson’s disease and discovered that music was beneficial to him. The organization’s mission is to use music to help control the progression of cognitive decline in seniors and build support systems for students.

The program has been a huge hit, and more musicians are still needed. Know someone who’s interested? Learn more here.

You’ve probably heard someone refer to forgetting a name, date or person’s face as having a “senior moment.” But does testing whether someone recognizes Elvis or George Bush help diagnose rare forms of dementia?

A recent study asked people to name and recognize images of famous faces of the 20th Century, including Albert Einstein, Oprah Winfrey, Pope John Paul II and Barbra Streisand, to name a few. All the famous people selected were considered “cultural icons” and easily recognizable.

The test was given to 27 healthy adults and 30 people with a rare neurological condition called primary progressive aphasia (PPA), which causes problems with communication, especially spoken language, but does not affect other brain functions. PPA is one of the rarest types of dementia, and often attacks between age 40 and 65 – hitting the Boomer population.

The study was completed by researchers from Northwestern University Feinberg School of Medicine in Chicago using their proprietary NUFFACE Test, and funded by the National Institute on Aging and National Center for Research Resources, among others. Results were published in the August 13 issue of Neurology. Although similar tests exist, researchers note that most are outdated and not appropriate to use with younger people affected by rare and specific forms of dementia.

Not surprisingly, those with PPA had significantly more difficulty naming and recognizing the famous faces. Researchers then tested whether the findings from the test were associated with changes to the brain structure using MRI. Again, those with PPA showed more atrophy in areas of the brain involved with both visual perception and language.

For a more in-depth look at the study, click here.

MARKETING INSIGHT: Despite the positive findings, this was a small study that only looked at the performance of people already diagnosed with one rare type of early dementia. It’s not clear whether this test would be accurate in diagnosing more common forms of dementia such as Alzheimer’s disease.

It seems as though more forms of early-onset memory issues have become prevalent in the Boomer demographic, pushing what had been previously viewed as “senility” up a few generations. As we saw in Project Looking Glass II and The Great Disconnect, memory support is top-of-mind for the “next generations,” and senior service providers must be ready – be that through preventative programs, wellness initiatives or even physical exams. We encourage more research, education and awareness on memory issues, and again, for nationally standardized methods of diagnosing and treating them.

Regards,

The Varsity Team