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The toll of dementia on patients and families

By Jennifer Lovy

Suzy Plaskey suddenly decided she no longer felt like driving. When she did get behind the wheel, she consistently took the same route to and from the Berkley middle school where she worked as a substitute teacher.

On the days she went to her catering job, she got lost on the way home. Her family could not understand why this was happening. She’d been to the venue dozens of times.

In retrospect, these were the first signs of Alzheimer’s disease. The diagnosis shocked her and her family. After all, who would think that a woman in her early 50s could develop Alzheimer’s disease, a condition where the greatest risk factor is old age.

“You never think Alzheimer’s or dementia, especially when someone is so young like Suzy was,” said her husband, Mike Plaskey, who at the onset of her symptoms, lived and worked in North Dakota while she and their youngest son remained in Berkley.

Plaskey knew something was really wrong when his wife came to visit and couldn’t navigate through the airport. He tried to get her on the plane back to Michigan, but she was in tears, paralyzed with fear over getting lost in the airport. A subsequent appointment with the neurologist and some tests confirmed that at the age of 53, Suzy Plaskey was in the early stages of Alzheimer’s.

“That was like the biggest punch in the face you could ever get. We knew nothing about Alzheimer’s or dementia. We knew nothing about what was involved and what was going to happen,” said Plaskey, who moved back to Michigan in 2013 to care for his wife. At the time, two of their three kids were away at college. Their youngest son, a 16-year-old high school student, was at home, helping to look after his mom.

For a good three years, Plaskey assumed the role of Suzy’s sole caregiver. At first, he could comfortably leave her at home while he worked. She didn’t need constant supervision and could do some tasks independently, including taking regular walks with their dog Dusty.

However, Plaskey had to bring in outside help as the disease progressed. For the last four years of Suzy’s life, someone stayed with her during the day while he went to work. After putting in full days as a salesman in the building products industry, Plaskey went home to spend nights and weekends caring for his wife.

“We were in our 50s, a time when we should have been planning our retirement. Instead, I was a caregiver who felt so isolated,” he said.

Although Plaskey had the support of family and friends, he still felt lonely, especially when his wife could no longer communicate. While others looked forward to weekend plans, Friday nights marked the start of a long weekend of looking after his wife.

“The silence was deafening, and there was nothing really to do but care give, and that made it really difficult to live a normal life,” he said.

Suzy Plaskey had early-onset Alzheimer’s disease, a less common form of Alzheimer’s. Roughly 6.2 million Americans age 65 and older live with Alzheimer’s disease, according to a 2021 study published by the Alzheimer’s Association, and that number is expected to more than double by 2050. Between 60 and 80 percent of dementia cases are Alzheimer’s, making it the most common type of dementia.

Dementia is an umbrella term used to describe symptoms such as loss of memory, judegment, and other intellectual functions. It impairs one’s ability to plan and conduct self-care activities such as feeding, dressing, and bathing. After Alzheimer’s, among the more commonly diagnosed forms of dementia are Lewy body dementia, vascular dementia, and frontotemporal dementia.

Lewy body dementia occurs when clumps of abnormal protein particles accumulate in the brain. This can affect mood, behavior, and thinking and cause hallucinations and Parkinson-like movements. Vascular dementia is caused by damage to the vessels supplying blood to the brain. Frontotemporal dementia is a brain disorder that mainly affects the areas of the brain typically associated with behavior and language.

According to Dr. Henry Paulson, a University of Michigan neurologist, dementia is when some cognitive abilities are lost, and an individual can no longer fully function independently with some tasks.

“That’s a pretty vague concept. There are many different cognitive domains. There’s memory, language, attention, behavior and spatial navigation. All are domains of cognitive function. When two or more of those domains are affected significantly, it can lead to functional impairment, and that is for us clinically the definition of dementia,” said Paulson, a professor of neurology at the University of Michigan, the director of the Michigan Alzheimer’s Disease Center, and the interim director of the Michigan Neuroscience Institute.

The flip side to the clinical definition of dementia is the emotional toll it takes on the individual and on family members. The degenerative nature of the disease steadily steals memories and dignity, leaving the person unable to care for himself or herself, while draining financial resources and emotionally depleting family members.

Alzheimer’s is a slowly progressive disease. Most experience the underlying pathological process for more than 10 years before they show symptoms, which would include memory loss and difficulties making decisions, according to Paulson.

As the disease advances, neurons in other parts of the brain are damaged or destroyed, impacting the parts of the brain that enable a person to walk and swallow. With no cure for the disease, it’s ultimately fatal, and is the sixth leading cause of death in the United States.

“With dementia, things will be okay for months and months and months, and then, all of a sudden, you’ll see a drop. Then you can go another six, seven months and then another drop in some little things like, ‘Oh she can’t drink out of a regular cup anymore, or she’s incontinent,’” said Plaskey.

As her Alzheimer’s progressed, Suzy refused to shower, suddenly perceiving the running water as painful. She went through an angry stage, where she’d yell at those who came into the house. She stopped brushing her teeth, started sleeping more during the day, and stayed awake at night.

Slowly, she stopped talking and didn’t recognize people outside certain family members. Her husband described it as heartbreaking.

Brandi Becker-Wright is a care counselor with the Alzheimer’s Association Michigan Chapter and Henry Ford Health System Collaborative, which helps families navigate their challenges in looking after a loved one with dementia.

Most of the time, people with dementia will start to live in their own reality, said Becker-Wright, who likes to use the analogy of keeping a journal to explain what memory loss can look like.

“Our brains act like we’re writing down everything that we do and say, everyone that we see, and all the places we go. In people who are in the early stages of dementia, it’s as if the pen they are using to write in the metaphorical journal is running out of ink. This explains why some of the earliest stages of memory loss seem to be forgetting very recent information,” according to Becker-Wright.

“You could say to someone, ‘What did you do this morning?’ and they can’t remember, because when they go back to reference that journal and they look at that page from today, that page is blank. So even though they wanted to write down what they did, nothing came out because that pen wasn’t working,” she explained.

When they get to the middle stages, it’s as if the pages of the journal have started to fall out, and they fall out in reverse order. Therefore, the things that happened more recently in their life fall out to where they have several years of their life now missing, she continued.

“So now, if you were to ask them ‘What did you do yesterday?’ and they flipped to their journal, and they look at the last page, which in theory should be yesterday, it could have things written on it from what they did 20 years ago, but it feels incredibly real because it’s the most recent page in the journal,” said Becker-Wright.

As a loved one goes through the stages of dementia, Becker-Wright recommends keeping them engaged as much as possible.

“We’re so busy making sure they have their meals, their meds, they’re showered, that we forget about making sure they’re having fun and doing things that are important to them. It’s also very healthy for their brain to be doing fun activities,” she said.

Brain health is a part of what professionals advocate to try and slow the progression of the disease. Lifelong learning could be beneficial in reducing the risk of developing Alzheimer’s because anything that is mentally stimulating may slow memory loss.

Dr. Marina Novikova, a Henry Ford physician who is board-certified in neurology and behavioral neurology, said staying cognitively engaged does not mean doing jigsaw puzzles because they are more about pattern recognition. Instead, she advises finding something more creative and outside the person’s comfort zone.

“When you try something new, you start to use different parts of the brain, making new connections between brain cells, and that’s, so to speak, creating a buffer. If something is to happen, you have extra layers of connections in the brain,” explained Novikova, who also serves as the program director of the behavioral neurology fellowship at the hospital.

Other factors beneficial to brain health include participating in aerobic exercise, getting enough quality sleep, and following a heart-healthy diet. Social engagement is also important, which is why adult day service programs are beneficial. Not only do these programs offer much-needed respite for caregivers, but they also address social needs through mentally and physically stimulating activities.

Before the pandemic, Bloomfield Township ran an adult day program where qualified adults 50 and older with a diagnosis of dementia could participate in therapeutic activities and structured socialization, such as gardening, games, crafts, exercise programs and group discussions.

Christine Tvaroha, the Bloomfield Township director of senior services, is optimistic that the program will resume this year and encourages interested families to reach out through the senior services page on the township website.

Tvaroha advises families to get their loved ones in an adult day service program as soon as possible. Too often, she said, families come to her when they are in crisis mode because the caregivers are overwhelmed and desperate to find help. “So many people tell us they wish they would have initiated services sooner,” she said.

While mental engagement, diet, sleep and exercise are beneficial, there are also a handful of drugs that can help treat the cognitive symptoms of the disease, particularly as they relate to memory and thinking. However, researchers are still looking for a “home run” medication.

Last June, the U.S. Food and Drug Administration (FDA) granted accelerated approval to Aducanumab (sold under the brand name Aduhelm), a medication aimed at slowing the progression of Alzheimer’s by removing amyloid proteins found in the brains of those with Alzheimer’s. Amyloid is an abnormal protein that binds to and destroys central nervous brain cells, eventually rendering these cells less effective or ineffective.

However, many physicians and hospitals, including the University of Michigan, say they will not administer it until there is more evidence that the drug is beneficial.

“I absolutely know that this antibody will clear plaques from the brain, and that could be a good thing, but we don’t yet have good clinical data to show that it is beneficial,” said U-M’s Paulson. “Do I believe that Aducanumab might be beneficial for a subset of people who have amyloid in their brain? Yes, I do. But I don’t think we’ve yet figured out how large that group is and how best to give them that medication.”

Aducanumab is a monthly infusion therapy that can be used by patients with mild cognitive symptoms to potentially slow the progression of the disease. To determine whether a patient is a candidate for Aduhelm, testing is required to ensure that Alzheimer’s is the cause of the person’s cognitive decline. This is done through a physician’s assessment, MRI studies and blood work. But, most important, a patient must have amyloid in the brain, a determination that is made based on results of a spinal tap or an amyloid PET scan.

As soon as Aducanumab became available, the Michigan Institute for Neurological Disorders (MIND) administered the very first dose in Michigan – and possibly the nation.

Since the drug’s approval, the Farmington Hills-based clinic has treated six patients with it. Dr. Jonathan Fellows, director of the Alzheimer’s disease clinic at MIND, said the main reason only a half-dozen patients have gotten the medication is that widespread insurance approval is lagging. The drug costs $56,000 per year and requires frequent monitoring through MRIs to check for brain swelling or hemorrhaging, both potential side effects.

“I tell my patients, as long as you tolerate it, this treatment is forever. And forever has a little asterisk next to it. What I mean by forever is – until the next great thing comes along,” said Fellows. “It’s by no means the home run drug. But, it’s a wonderful thing that we now have at least something else in our toolkit to offer patients while we are basically awaiting the next best thing. We don’t know what the next best thing will be. It might be a similar drug that has fewer side effects. It might be a similar drug that has more defined data. It might be a completely different class of medications, but at the very least, there’s a great deal of money and a great deal of research that’s being thrown at this horrific neurodegenerative disease.”

Dr. Novikova, from Henry Ford, agrees Aducanumab could be a precursor to other medications, particularly ones that will be easier to administer and more effective in treating Alzheimer’s.

Researchers, she said, are not even sure if amyloid is the protein that needs to be targeted to treat Alzheimer’s. Tau is the other primary protein implicated in the disease, and anti-tau therapies are being tested as well, according to Novikova.

“We’re trying to figure out what’s the chicken and what’s the egg between this amyloid protein and the tau protein. We know both proteins change in Alzheimer’s disease. That’s where a lot of research is happening. They are trying to determine which one starts the process that causes symptoms and where we need to intervene. Which protein do we need to target; maybe both. I think this is the most promising pathway we have right now,” Novikova said.

Another avenue being pursued in the fight against Alzheimer’s is a nasal vaccine designed to prevent and slow the progression of the disease. The vaccine is designed to activate white blood cells in the lymph nodes that travel to the brain and clear the amyloid plaques. The study, conducted at Brigham & Women’s Hospital in Boston, consists of 16 participants between 60 and 85 years of age with early symptomatic Alzheimer’s.

While it’s not a treatment, Paulson of U-M is excited about a blood test being developed to help diagnose Alzheimer’s. He anticipates it being available within a year.

“It will be a test that will say yes, we do believe that you have the Alzheimer’s process going on, or not,” he said. “When I do a brain image of someone, it does not tell me that it is or is not Alzheimer’s. It just gives me indications that it might or might not be Alzheimer’s, whereas a blood test might be definitive. It might say yes, this person has the biomarkers of Alzheimer’s, and therefore their memory loss is almost certainly due to the disease.

“That to me is an important game-changer. This will allow us to more precisely diagnose, which will help us help families understand what they’re facing, what the future might be, and what kind of medications they might want to take.”

The burden of dementia on families, and the healthcare system, is staggering because of the long duration of the disease and the increasing level of care required as it progresses. According to the Alzheimer’s Association, the lifelong cost of caring for an individual with dementia is $373,527.

The financial burden of caring for Suzy Plaskey increased significantly as her family watched her health deteriorate. To help offset expenses, Plaskey’s brother and sister-in-law organized a golf fundraiser.

The Team Suzy Golf Outing was so successful that it is now an annual event to support other families impacted by Alzheimer’s and dementia. Last year marked the seventh year of the fundraiser, which was attended by 180 participants. To date, they’ve raised more than $250,000.

Following Suzy’s death, Plaskey and his nephew met for a brainstorming session. They jotted down ideas and goals on a whiteboard about taking Team Suzy to another level. The question they kept coming back to was, “How do we help the caregiver.”

In 2021, the Team Suzy Foundation was established to help those affected by Alzheimer’s by granting financial aid to caregivers. They also educate others about the disease and partner with local non-profit organizations offering services to those affected by Alzheimer’s and other forms of dementia.

“If I didn’t do this (Team Suzy), then I think, what was this truly about?,” Plaskey asked. “Why did I suffer? Why did I sit in that house alone for so long, by myself, crying and hoping? Someone today is in tears because they don’t know what to do.”

In 2020, approximately 463,000 people in Michigan were caring for a loved one with dementia. They provided an estimated 491 million hours of unpaid care, according to the Alzheimer’s Association.

As more people age and at-home care isn’t always an option, the need for affordable assisted living and nursing home care is rising, leaving some industry professionals worried about meeting the anticipated demand.

Lee Karson runs SKLD Bloomfield Hills, a skilled nursing home, and thinks that while the need for affordable placement is growing, the industry still isn’t doing much to meet those needs.

“To some degree, they were talking about it before COVID-19, but the demands from COVID – the reporting requirements and challenges of finding staffing – I think that has completely sidetracked everybody, and it’s a shame. I’ve never seen anything like this in my life, and can’t even predict what’s going to happen moving forward,” said Karson.

According to the U.S. Department of Health and Human Services, those ages 65 and older have a 70 percent chance of needing long-term care, which can carry a hefty price tag.

The average cost for assisted living in the Bloomfield Hills-area can range between $3,000 and $10,000 per month, depending on whether the facility is low-income senior housing or a private-pay facility, according to Morgan Schilling, the business development director for the Avalon Communities of Michigan, which includes the Avalon of Bloomfield Township, a private pay community.

Eric Lenz is a sales executive with Emerald Coast Building Company, a Clinton Township-based business that does the interior finishes in assisted living facilities throughout the midwest. He offers a different perspective, reporting growth in the number of high-end assisted living facilities being built.

“We’ve noticed many of these places are just going above and beyond, raising the bar in terms of interior quality and design, almost turning them into something resembling a Las Vegas resort. Not quite to that magnitude, but they want to attract a certain clientele over their competitor down the road,” he noted.

Lenz said this is particularly true in Bloomfield, Rochester, Lake Orion, Clarkston, Novi and Northville because these are areas where some of the people maturing want to maintain their standard of living.

Lenz is surprised by the market for these high-end facilities and asks, “How many is enough? They wouldn’t be building if there wasn’t the demand, but the prices to live there have to be through the roof.”

“Many members of the Health Care Association of Michigan (HCAM) have units dedicated to memory care. The staff on those units typically have additional training on working with residents that have Alzheimer’s, dementia or other memory care issues. HCAM received a multiyear, comprehensive grant from the state of Michigan for specialized training for dementia residents to order to provide a more person-centered care experience. As more people are impacted by these diseases it is important to continue to provide a local, high-quality care option in skilled nursing facilities,” said Melissa Samuel, president and CEO, Health Care Association of Michigan.

With the widespread impact of Alzheimer’s and dementia, the Michigan chapter of the Alzheimer’s Association is dedicated to seeking changes in how resources are allocated to increase awareness, diagnosis, and management of the disease and addressing its impact on families and communities.

“I think the level of awareness and the level of impact that Alzheimer’s disease has had is really started to emerge. With our efforts to ramp up legislative involvement, there’s a greater awareness that Alzheimer’s disease is not just a condition of aging, but it’s a public health problem. I think policymakers are getting that message,” said Colin Ford, public policy director for the Michigan chapter of the Alzheimer’s Association.

Ford talked about how the most recently approved state budget allocated a one-time funding of $400,000 to create a dementia unit within the government. However, the legislation lacks guidance in terms of program implementation.

Because of the absence of specificity, the organization’s advocacy efforts have shifted to building the dementia unit within the Michigan Department of Health and Human Services (MDHHS), “In a way that fulfills the vision of what this can mean in terms of leveraging the resources within state government in a way that can make a positive impact on the lives of people living with dementia, as well as caregivers. Our focus in the longer term is to assure that funding for the dementia unit continues into the future,” said Ford.

The Alzheimer’s Association Michigan Chapter is also advocating for legislation that would improve access to neurologists and geriatricians in underserved areas.

Under the Michigan Essential Provider Program, some medical providers qualify for a loan reimbursement program if they practice in underserved parts of the state. Physicians specializing in neurology and geriatrics, two key specialties in diagnosing and managing dementia, are not included.

“This bill is an attempt to over time help build out that infrastructure in the state of Michigan so that wherever you live, you would have access to a neurologist or a geriatrician,” said Ford.

On a national level, U.S. Senator Debbie Stabenow (D-Michigan) is the lead author of a bill that would allow the federal government to test a dementia care management model to provide comprehensive care to Medicare beneficiaries with Alzheimer’s or dementia. The bill also allows a similar model to be designed under Medicaid.

Called the Comprehensive Care for Alzheimer’s Act, this proposed legislation would provide care management services, including monitoring other health conditions, medication management, and care coordination. It would eliminate cost-sharing for patients and pay providers based on the complexity and quality of the patient’s care, ensuring that caregivers are supported and able to participate in the coordination and management of care.

According to Stabenow’s office, the bill would establish high standards of care by evaluating the quality of care, clinical outcomes, patient satisfaction, and utilization of care and requiring outreach to underrepresented populations and culturally appropriate care.

“The needs of someone with Alzheimer’s disease and their family members who are caring for them are unique and especially challenging. This bill takes a comprehensive approach in addressing these special health care needs. It creates a model for innovative planning, high standards of care, and support for caregivers while reducing costs through better coordination,” said Senator Stabenow in a written release.

Caregiver support is arguably the most pressing need for those with a loved one impacted by the disease. The Alzheimer’s Association Facts and Figures Report, published in 2021, found that 59 percent of caregivers have chronic health conditions. Healthcare professionals said they often find that family members are so consumed by caregiving that they frequently neglect their own health.

“Burnout is real, and you definitely cannot be a good caregiver if you are not well cared for yourself,” said the Henry Ford social worker, Becker-Wright. “A lot of people don’t start thinking about respite until they are at a stage of needing it immediately.”

People often assume that if their loved one doesn’t need intense care, they don’t need respite. “You hire someone to give yourself a break so you can recharge,” advised Becker-Wright.

Plaskey, who now lives in Auburn Hills, said he thinks about caregivers all the time because it’s a very stressful and lonely way to live, particularly when the person you’re with can no longer communicate.

“You have to think, what are they looking for, what do they want? You become their voice, particularly with the doctors and the people coming into the house,” he said. “But you also have to live. There’s still life after this. I wasn’t even 60 years old when she passed. You have to accept what it is and then keep living. It’s so important.

“One of the most important things in my caregiving journey was when I accepted death. I realized that no matter how much money or what doctor I went to, they could never change the outcome of Alzheimer’s. Suzy was going to die, and I would be a single man one day. As sad as that was to accept, it’s the brutal reality of the illness.”

A diagnosis is challenging for some to accept because of the stigma associated with cognitive diseases. The reasons vary, but Becker-Wright speculates that one explanation is that in the past, as people aged and showed signs of cognitive decline, they were institutionalized, and families often became reluctant to talk about it.

Becker-Wright often attends health fairs, representing the Alzheimer’s Association. She finds herself standing in front of the organization’s display table, waiting to talk to attendees. Some stop, but far too many walk by and whisper loudly, “I don’t want to talk to them because I don’t want to know about it.”

“I understand that it’s scary, but not knowing about it doesn’t make it go away,” said Becker-Wright.

Suzy Plaskey’s battle with Alzheimer’s ended in January of 2020. She was 62. When she stopped eating and couldn’t swallow, her family knew it was almost time to say goodbye. A hospice team helped them get ready for her final days.

“There were no more tears to give. So I prepared myself by saying this is okay. This is going to be fine. Everyone is going to be fine. I was calm, super calm, along the way,” recalled Plaskey.

On a cold January night, Suzy’s oxygen machine began making loud noises, waking her husband up at around 2 a.m.

“I’m looking at her, and she’s taking her last breath, and I said to her, ‘You’re not dying, are you?’ I put my hand over my mouth and went, ‘Oh my, you just died, didn’t you?’

“I had this incredible smile on my face. Like the world lifted off my shoulders, and I sat there, and I’m like wow, wow. That was special. I was holding her hand. I don’t know how long I was sitting there looking at her. I had no more tears. I just knew the journey was over for us. I can cry now. She’s at peace. I’m at peace. It was comforting to know that I gave everything I could give, and so did our family and friends, and see it end so peacefully.

“It was worth everything to go through that pain because I lived to tell about it, and I’m here on the other side, living a great life right now. And that’s okay. It’s not that I don’t miss Suzy or think about her daily, but it’s about life. It’s not about Alzheimer’s and dying. It’s about having your life and living that life the best you can.”


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