Lee Johnson was a beloved, award winning chemistry teacher in one of Portland, Oregon’s largest high schools. Students who walked into his class fearing atoms, molecules and the periodic table, came to love learning from “Mr. Johnson.”
Gregarious and handsome, Lee was picked by fellow teachers to be union spokesman on the nightly news when the district faced a strike. Lee helped negotiate the contract and mend fences.
Lee and his wife sang in the church choir, raised funds for the needy and opened their home to anyone in need. They travelled the globe, pinning their routes on a giant map hung in Lee’s den. They read voraciously and completed – in pen – the New York Times crossword puzzle. Even the notorious Sunday version.
By the time Lee was in his late 80’s, his four grown children began noticing changes.
“We’d all be together having fun and Dad would quietly withdraw to go sit by himself in another room,” said Tricia Johnson, Lee’s daughter. “At first, we thought he couldn’t hear, but even with hearing aids he withdrew. He began making errors in his checkbook, forgetting things he knew all his life and repeating conversations. It was heartbreaking.”
A series of near catastrophic accidents at home where Lee and his wife were both injured was the wakeup call that Lee needed 24 hour care.
“The caregivers at the memory care facility were absolute angels on earth and provided the best possible care and supervision,” said Tricia. “They kept him engaged. At first it was hard to see him doing things like coloring, but I realized this new version of my dad was really happy through his last days.”
Tricia’s story is familiar to the friends and families of the six million Americans who are living with dementia related diseases, like Alzheimer’s.
Why Cases of Dementia and Alzheimers are Rising
In 2030, for the first time in history, the largest population in the US will be seniors. The population of adults older than 85 will double by 2036 and triple by 2049. Alzheimer and dementia deaths have already jumped 16% due to the isolation during COVID-19. The US will need nearly 1 million new senior living units by 2040 to accommodate the older population and that doesn’t include the number of memory care-only population.
If you’re walking this journey right now, this blog we’ll give you the information and reassurance you need to make the right decisions for you and your loved one. You’ll learn the following:
- The early signs of dementia and Alzheimer’s.
- What you should ask the doctor if your loved one is diagnosed with dementia or Alzheimer’s.
- The surprisingly simple way to begin finding an excellent memory care facility.
- What qualities make an excellent memory care facility. (Memory care isn’t what you may think.)
- How to go about visiting and touring a facility. (And one key thing not to do.)
- What to watch for during your tour, including the red flags.
- A name, number and other resources for more information.
For answers, let’s go to industry expert Melissa Laurandeau, the director of Oregon’s Marquis Hope Village Memory Care, which continuously trains all staff in the complex and diverse needs of its residents. Melissa has a broad healthcare background, working in the field for over 15 years. She’s helped patients achieve their best health at every level, from hospitals to home care to assisted living and memory care.
Q: Melissa you wanted to start out with some good – and surprising – news. Not every person with dementia or Alzheimer’s immediately needs memory care, correct?
A: That’s right. Dementia is very subjective. It describes a range of symptoms that affect a person’s ability to live an independent life. Alzheimer’s, a neurodegenerative disease, is the most common cause of dementia.
The same diagnosis doesn’t look the same on any two people and there’s not just one level of needed care. Many people are surprised to learn that some people with dementia can maintain semi-independent lives, even at home, perhaps with occasional visits from someone to check on them, giving them cues and reminders on things like taking their medications.
Also, many people with certain degrees of dementia and Alzheimer’s lead happy lives in a variety of long term living facilities that are not specifically memory care.
A memory care facility becomes the best choice when someone who is diagnosed can no longer take care of themselves. They need 24 hour care. It’s now a matter of safety. Memory care is a low stimulus and secure environment. The ratio of care givers to patient is higher, so there are more opportunities to interact with each resident. But as we’ll talk about later, memory care is not just about keeping a patient safe. It’s about helping stimulate their brains, keeping them mentally engaged and social.
Q: What’s the first thing you share with families when they begin this journey?
A: Well, first may I say it’s a privilege to help each family understand and navigate that road. I reassure them it’s normal to feel overwhelmed. Many people tell me, “ I just never saw this coming. My mom can’t be alone anymore. What do I do? What’s best for her?”
So, we talk through what dementia looks like, what families can expect, what they are seeing already and that’s it not their loved one doing these things –– it’s the disease. Yes, their mom or dad is there, and they may not be the same, but they’re still a beautiful individual who needs people around them. They still need love.
Dementia is progressive and sometimes happens slowly and sometimes quickly where families must act fast. We discuss options for helping their loved one maintain as much independence as possible while keeping them safe.
We also talk a lot about the emotional needs and care of the family. There may be guilt they can no longer provide care. We help them realize that this is what we do. We’re trained and have a passion for doing the more difficult part of dementia care. This frees up the family to foster their relationship with their loved one.
Q: What are the key warning signs of early cognitive decline and later, dementia?
A: The early warning signs can include misplacing items, making poor decisions, not remembering day to day things, who they just talked with or where, say, the silverware drawer is located.
Later, there may be behavioral changes. Someone who was always outgoing and social will start becoming introverted. That’s a method of masking or hiding. That person is subconsciously retreating from social activities because he doesn’t remember how to do these things or doesn’t remember names and faces.
Some people get angry and defensive, blaming others for moving or hiding something they can’t find. They aren’t trying to be cranky; they’re just frustrated and trying to hide the fact they can’t remember. They don’t want to believe their brain is playing tricks on them.
There may be disorientation to time and place. Out of the blue they may say they just saw someone who really wasn’t there. They may forget what year it is and how old they are.
There’s often difficulty performing familiar things like driving, turning on the stove to warm up a pan, walking into a grocery store and knowing what to do there.
Just a quick note here, I want to assure everyone that we all can be absentminded. Forgetting everything you were supposed to get on a grocery list is normal. Dementia is when we forget what we do in the grocery store or how we got there.
That’s when it’s wise to visit the doctor for a proper clinical diagnosis.
Q: If that diagnosis is dementia or Alzheimer’s, what are the next steps the family should take?
A: It can be different for each family but here’s a short list of what I recommend:
- Doctor recommendations: It’s important to ask the doctor whether your loved one needs 24 hour memory care. If the answer is yes, ask for some recommendations on best facilities. Then begin adding to that list with your own research.
- Google Search: Yes Google, is a great way to get a baseline on best facilities out there. Type in key words like “memory care facility near me.” Read the reviews and what services they offer. Ask friends if they know of any good facilities. Add those to your list.
- Write down your questions. Before you visit some memory care facilities, you need to be ready to talk. Tell them your story, what your witnessing, what’s happening at home –– all your concerns. You’re going to want to find out services they provide, costs, how staff is trained and is that training ongoing. Ask them for a sample of the daily activity calendars and what a typical day looks like. You want to balance out their services with the needs of your loved one. If it’s a multi-level care company, like Marquis’, the administrator and staff should be well trained in helping you determine which level of care is best. The more you tell them, the more they can help.
- The visit: You can schedule a tour or just show up! You don’t have to call ahead. Someone should be able to give you a tour at any time. Talking to an administrator or admissions person, who are typically available during business hours, can give you a better idea of open availability and more details regarding services, but a walk through to check things out is always encouraged.
- Observation: As you tour and ask questions, observe whether the facility looks like “home.” Is it bright and cheery? Are there pictures, blankets, anything that makes it feel cozy? That may mean different things to different people, but you’ll know it when you see it. Notice what the residents are doing. Are they out and about, interacting with staff? Is there laughter, smiles and activity? Are the facility and the residents clean? Think about what would be important to your family.
- Red flags: Trust your gut. If you can’t see your loved one living there, there’s probably a reason. Our visitors comment that our facilities are bright, clean, smell great and they notice the residents and staff are always engaged. Those are the tops things to notice. If you don’t see a lot of activity, it’s ok to ask why.
Q: Can you talk a little more about staff and resident engagement? What kinds of activity should we see?
A: Memory care doesn’t need to be a place where residents just sit or sleep. There should be individualized activities that help stimulate the brain and help residents have fun.
I’ll use a few examples from two of our facilities, Hope Village Memory Care and Eugene Memory Care. Marquis’ company-wide focus has always been person-centered care, or as we like to say, “helping each person live their best life.” That’s especially important in memory care when the residents aren’t always able to articulate their wants and needs.
So, we use our physical environment, staff training, and programs to engage our residents. For instance, our facilities are designed to be safe yet they feel open and inviting. We choose colors and patterns that reduce confusion or agitation and that stimulate all the senses. We have outside spaces where residents connect with the environment.
Our clinical and non-clinical staff receive ongoing, highly specialized training in effective, empathetic and cutting edge care.
For our programs, we’re big fans of Teepa Snow, a nationally occupational therapist and recognized dementia expert. Her positive approach creates purpose and meaning through work, leisure, self-care, and rest and relaxation. In each of those areas, we design personalized service plans for every resident.
Before a new resident even moves in, we sit down with his or her family to learn all about that person’s life: their routines, hobbies, things they were good at and that gave them great joy. We make adaptations to create that in their new home, with us.
For instance, one of our residents loves to sew, quilt and knit. She can no longer manage the sequencing of those skills, but she’s familiar with yarn –– the feeling, size and color. I hand her a loop of yarn and ask her to wind it into a ball. She loves helping. She feels purpose.
Another resident grew up working on cars. We thought about what might reawaken that joy. We knew nuts and bolts and toolboxes were familiar to him, so we asked him if he wanted to help us separate nuts and bolts, something he was more than happy and able to do.
In memory care, little things are big success. We aren’t undoing dementia, but we are tapping into where each resident is right now and giving their mind purpose.
Q: What kind of changes do you see in residents?
A: A kind of reawakening. We see single people who’ve been at home without interaction, open up when they come into memory care. We see couples who live at home for decades who have been compensating for each other, not realizing dementia has set in, come into memory care and start engaging with others. The activity stimulates their brains and wakes them up a bit. Families recognize that.
There are the cases where we’ve seen some big changes. I’ve had families tell me, “I didn’t believe you when you said they could start becoming this social again –– and then they did.”
As Teepa Snow puts it, “meaningful days matter to all people.”
Q: Thank you Melissa! Where can someone go for more information?
A: There are great organizations like the Alzheimer’s Association and the American Association of Retired Persons (AARP). Teepa Snow’s website is a wonderful source of information, as is our Marquis website on memory care. Take a virtual tour of my facility at Marquis Hope Village or any of the other Marquis care facilities. And I’m happy to take questions! Contact me at HopeVillageMC@marquiscompanies.com or 503-266-0400.