It is estimated 6.5 million Americans have Alzheimer’s disease. By 2050, the number is projected to double, according to the Alzheimer’s Association Facts and Figures Report.

Ken Johnson of Chesterfield Township is one of the millions.

At the age of 70, his wife, Barb, noticed he was off his game.

“I would tell him things — like we were having company for dinner and I needed him to pick up something on his way home — and the next day he would say, ‘What are you talking about?’” said Barb during an interview at the couple’s home.

One spouse not paying attention to the other at some point is not uncommon. 

“I call it husband selective listening,” she quipped.

But his demeanor changed and instead of being the patient and easy-going man she’s been married to for more than 34 years, he became someone who was quick-tempered and angry.

“People were always saying,‘Ken has the patience of Job,’” Barb said, referring to the idiomatic phrase meaning he always had a great deal of patience and faith during times of trouble and difficulty. “He was no longer that person. I finally asked him, ‘Are you having an affair, because you seem so unhappy.’”

“I noticed it too,” said Ken, while sitting at their dining room table across from Barb. “As a kid I used to read the comics and I remember this one guy had a dark cloud hanging over his head, all of the time. That was me. I would get these days when I felt the cloud hanging over me and I would get vile.”

They were both concerned and after talking to a neighbor who works at Henry Ford Hospital decided to make an appointment for Ken at the Henry Ford Memory Clinton where he was given an 8-hour cognitive test. 

“I failed miserably,” Ken said, remembering one of the only exams in his life that he’s flunked.  

“I’ve always had a lot of schooling,” said Ken, who worked as an engineer for General Dynamics before a back injury forced him to retire. 

Barb concurred.

“He’s a very smart man,” she said proudly of her spouse, whose passion for mechanics and engineering has been supported by hobbies that have included everything from classic cars to remote-controlled boats. “This man can fix anything.”

Ken Johnson, 81, talks about his life since being diagnosed with mild cognitive impairment (MCI). GINA JOSEPH – THE MACOMB DAILY

“But I did not recognize the word peach or ball. There were 100 words on the test and I only knew three of them,” said Ken, who shares his time with his five children, 10 grandchildren and three great-grandchildren.

It was then he was diagnosed with Mild Cognitive Impairment (MCI).

Understanding and distinguishing Alzheimer’s 

MCI causes cognitive changes that are serious enough to be noticed by the person affected and by family members and friends but do not affect the individual’s ability to carry out everyday activities.

MCI can develop for multiple reasons and some living with it may go on to develop dementia. 

Maria Carrillo, Ph.D., chief science officer with the Alzheimer’s Association said MCI is often confused with normal aging, but is not part of the typical aging process.

“Distinguishing between cognitive issues resulting from normal aging, those associated with MCI and those related to MCI due to Alzheimer’s disease is critical in helping individuals, their families and physicians prepare for future treatment and care,” Carrillo said in a news release announcing figures related to the disease issued by the Alzheimer’s Association earlier this week. “While currently there is no cure for Alzheimer’s disease, intervening earlier offers an opportunity to better manage the disease and to potentially show progression during a time when individuals are functioning independently and maintaining a good quality of life.”

Such is the case for Ken, who was prescribed several medications that helped to offset the mood swings and his ability to sleep.

Early diagnosis 

Understanding and recognizing MCI due to Alzheimer’s disease is important because it provides an earlier opportunity to intervene in the Alzheimer’s continuum.

“Most of the people we see in care and support services will say, ‘I wish we got diagnosed sooner, because if you get diagnosed sooner there’s medications you can go on,’” said Jean Barnas, director of program services for the Alzheimer’s Association Michigan Chapter

She has been working in the field for 20 years never knowing that one day it would be her mother that would require her guidance and expertise. 

“It was devastating news,” Barnas said of the diagnosis her mother got at the age of 69 after struggling to understand how she could go from being a teacher one day and forgetting her appointments the next. “She wanted information. She wanted to understand what was happening.”

So, Barnas and her father discussed the possibility of Alzheimer’s with her mother. Then a neurologist ran a series of tests to rule out everything but that, since some cognitive problems can be brought on by other conditions including a stroke and diabetes, but it was confirmed. However, knowing what she had and what was coming enabled her mother to find ways to deal with it.

“She found a buddy who also had it and they came up with strategies to help deal with it,” Barnas said. 

One example being her attire. Barnas’ father would lay out several outfits each day and let her mother choose the one she liked best, allowing her to have a say in that decision.

Knowing what to expect also enables those diagnosed and their caregivers or children to make necessary arrangements for future care such as living arrangements or having an elder law attorney draw up the documents for legal guardianship and power of attorney.

“It’s a learning experience for everyone in the family,” Barnas said. 

Shedding light on a dark disease 

The 2022 Alzheimer’s Disease Facts and Figures report released by the Alzheimer’s Association March 15 is an important piece of work at a critical time.

The United States population age 65 and older is expected to grow (from 58 million in 2021 to 88 million by 2050), and along with that  rising number of Americans diagnosed with Alzheimer’s or other dementias.

  • In Michigan, there are currently 190,000 Michiganders age 65 and older living with Alzheimer’s, which by 2050 is expected to reach 220,000, a percentage change of 15.8%
  • Nationally, about one in nine (10.7%) over age 65 is living with Alzheimer’s dementia, totaling an estimated 6.5 million Americans. 
  • Two-thirds of those who have Alzheimer’s dementia (4 million) are women.
  • Deaths due to Alzheimer’s disease between 2019 and 2020 have more than doubled (145%).
Billy Konsoer, 49, of Farmington Hills shown caring for his mother, Mary Konsoer, 80,  is one of 11 million caregivers of people with Alzheimer’s disease or other dementias. Putting a puzzle together with her grandmother is Alexandra Konsoer. Photo courtesy of the Konsoer family.

The Burden on families 

Mary Konsoer of Farmington Hills spent most of her life caring for other people.

As a young mother – left on her own after her husband died — she not only raised her own five children but helped other parents with theirs as a daycare service provider in her community.

“I always remember at least five kids around our house,” said Mary’s son, Billy Konsoer. “She just has this maternal side of her that wants to care for others, which is the main reason that my wife and I wanted to take care of her.”

At the age of 73, Mary had a stroke.

“She recuperated afterwards but she was living in a big home with stairs to navigate. It was no longer safe for her to live on her own. At first she moved in with her daughter, Billy’s older sister but it didn’t work out. So, after several discussions Billy and Andrea decided to become Mary’s caregivers. 

“We took her in shortly after my son was born,” Billy said. “He’s 6 now and we have a daughter who is 5.”

The family moved a few times gaining more space for everyone including grandma but eventually decided to build a suite onto their existing house, allowing Billy’s mother to live somewhat independently. 

In 2020, she was diagnosed with MCI. 

Since then, her health has been declining and the growing need for her care has made it difficult for Billy and Andrea to care for their children, whose needs have also increased.  

What has helped them, as well as Barb and Ken, has been the support provided by the Alzheimer’s Association. In addition to information about MCI and how it impacts the way a person thinks or acts, there are classes that provide caregivers with coping skills and tools to help in the process. 

“They are a fantastic resource and incredibly patient,” Billy said. “They are experts in their field and just knowing that has given me the confidence and peace of mind to facilitate their suggestions in the care of my mother.”

One suggestion being to give themselves a break. To do so, Billy and Andrea enlisted the services of Visiting Angels. Once a week an angel takes Billy’s mother to church. The trip not only provides Billy and Andrea with a break for themselves but forces his mother to focus a little more while at services. 

“I’m very hopeful that this will work out in many ways,” said Billy, who is one of more than 11 million caregivers of people with MCI or Alzheimer’s disease.

Nationally, caregivers last year provided an estimated 16 billion hours of unpaid care, a contribution to the nation valued at more than $271 billion. Nearly half (48%) were caring for someone with Alzheimer’s or another dementia. 

In Michigan, 466,000 residents served as unpaid family caregivers totaling 495 hours at a value of $8.6 billion.

Unfortunately, not everyone is able to care for their parents or family members.

The workforce shortage

Jennifer Lepart, CEO and president of the Alzheimer’s Association Michigan Chapter said one of the things she found striking about the report are the issues related to the dementia care workforce.

According to the Alzheimer’s Association report:

  • Michigan will have to nearly triple the number of geriatricians who were practicing in 2021 to effectively care for approximately 10% of those 65 and older, who are projected to have Alzheimer’s dementia in 2050.
  • More than half (55%) of primary care physicians, who frequently make the initial diagnosis of dementia, report there are not enough dementia care specialists in their communities.
  • Twenty U.S. states have been termed “dementia neurology deserts” because they are projected to have fewer than 10 neurologists per 10,000 people with dementia by 2025 including: Alaska, Arkansas, Delaware, Hawaii, Iowa, Idaho, Kansas, Kentucky, Maine, Mississippi, Montana North Dakota, New Mexico, Nevada, Oklahoma, South Carolina, South Dakota, Vermont, West Virginia and Wyoming.
  • A state-by-state analysis in this year’s special report found 12 states that will need to increase the number of practicing geriatricians at least five-fold to care for those projected to have Alzheimer’s dementia in 2050. 
  • The report also examined the number of direct care workers such as nurse aides and nursing assistants, home health aides and personal care aides needed between 2018 and 2028:
  • In 2018, Michigan had approximately 70,810 home health and personal care aides.
  • By 2028, Michigan will need 23.4% more home health and personal care aides to serve the growing need.

Direct care workers have difficult jobs and they may not receive the training necessary to provide dementia care. Turnover rates are high among direct care workers – as high as 65% annually for certified nurse assistants – and recruitment and retention are persistent challenges in the industry.

The situation was exacerbated by the pandemic.

According to data from the Bureau of Labor, nursing homes have lost more than 380,000 employees since the pandemic began. 

A survey by the American Health Care Association and National Center for Assisted Living (AHCA/NCAL) also found nearly every nursing home and assisted living community is currently facing a workforce crisis. As a result of the staffing shortages, 58% of nursing homes have had to limit new admissions because of a lack of employees. As a result, occupancy rates have been slow to recover. 

Mary Konsoer, 80, of Farmington Hills, center, works on a puzzle with her grandchilden, Billy, 6, and Alexandra, 5. Mary lives with her son and his wife in a suite they added onto their home. (Photo courtesy of the Konsoer family)

“The issue related to caregiving and the lack of a trained workforce in the coming years are very problematic,” said Lepard, whose father was diagnosed with MCI and like many families in Michigan finds herself in search of a caregiver. “Even if you are well informed and have the resources there’s no magic number you can call to have a trained caregiver show up at your door.”

Advocates for change believe part of the problem is the pay. Caregivers are just not making what they should.

A search of job opportunities online — and there are many — show caregivers make an average of $13 an hour. Job openings for dementia specialists at facilities in Macomb and  Oakland counties are between $15 and $20, while some areas of St. Clair County have wages as low as $12 an hour.

However, at least 41% of the families who need a caregiver and have taken the role on themselves have a household income of $50,000 or less.

“We have to acknowledge it — we depend a lot in our society on low wage workers,” Lepard said. 

New strategies

Despite the problems with the direct care workforce and the need to expand it in the future there is good news on the horizon.

The Federal Food and Drug Administration has approved a new drug.

Biogen’s Aduhelm, which is the first treatment for the mind-wasting disease to be approved by the FDA in 20 years, has proven to be successful in removing amyloid plaques from the brain of people with Alzheimer’s, according to a report by Reuters.

It could also pave the way for other plaque-clearing drugs in advanced development by other companies.

Initially, the government’s Medicare program, which provides health benefits for Americans aged 65 and older, proposed paying for Biogen’s drug and similar treatments in development but only for patients enrolled in government studies. However, patient groups are mounting a public pressure campaign aimed at persuading the U.S. government to loosen proposed restrictions on new Alzheimer’s patients.

USAgainstAlzheimer’s is one of the groups leading the charge to assure Medicare does not exclude anyone in its coverage decision, which is expected to be announced April 11.

“We want to put a face on the individuals that are affected by this Medicare decision,” USAgainstAlzheimer’s Chairman George Vradenburg told Reuters. “We tend to talk about big numbers. We don’t talk about individual people.”

The cost of the drug is about $28,200 per year.

Biogen has estimated that around 1 million people in the early stages of the memory-robbing illness should be eligible for Aduhelm.

“The fact that there is a disease-modified drug is huge. It’s invigorating,” Barnas said. “I’ve been working in this field for 20 years and nothing like this has happened. It’s going to provide a lot of hope for a lot of individuals and families.”

Alzheimer’s is a terrible disease but there are a lot of positive changes going on including new treatments, a worldwide study to determine how lifestyle changes can combat Alzheimer’s, and programs to support respite care assistance.

Respite provides relief to people who are caring for individuals with Alzheimer’s disease or a related dementia. Time away from care giving responsibilities is essential to the well-being of caregivers. Respite care helps to reduce stress and improve the quality of care provided by caregivers.

The Michigan Chapter has Respite Care Scholarships in Huron, Macomb, Oakland, Sanilac, St.Clair and Wayne counties to cover the cost of: 

  • Adult Day Programs
  • In-Home Care
  • Overnight Care

A lot of the facts and figures in the report by the Alzheimer’s Association are concerning but its focus on non-cognitive impairment will generate dialogue.

“I’m glad that it’s being talked about more,” Barnas said.

That is one of the reasons Barb and Ken spend a great deal of their time sharing their experience with the media and groups in the community that should know what’s going on.

“We’ve met a lot of couples who are in denial,” Barb said. “They put blinders on and think it’s going to go away but we’ve never neglected our health and we’ve always said we can handle anything if we know what it is. Maybe it’s going to be bad but we’ll figure it out.”

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