With the disease on the rise, we delve into what Alzheimer’s looks like and what can be done.
Alzheimer’s disease is a progressive, irreversible deterioration of the brain that leads to severe dementia. According to the Alzheimer’s Association, 5.7 million Americans have the disease, a number that is expected to climb to 14 million by 2050, making Alzheimer’s and other dementias the sixth leading cause of death in the U.S. The disease is found predominantly in those over 65, though hundreds of thousands develop it sooner. It’s also more prevalent among women, Hispanics, and African Americans.
Why is Alzheimer’s on the rise, and what can be done about it?
The impact felt by the rise of Alzheimer’s is exacerbated by the fact that so little is known about what causes it and, therefore, how to prevent or treat it.
“There has been no definitive cause of Alzheimer’s identified, and it may be that there are different paths to develop the disease for different people and ethnicities,” says Dr. Chandra Prasad, a former general and vascular surgeon who now owns the Genesis Laser and Vein Center and MedSpa in Jefferson City. His interest in Alzheimer’s has spanned his whole career because the disease affects all aspects of patient care. His mother-in-law also died from the disease.
Age is the leading risk factor for the disease, and the surge in diagnosed cases is directly related to the aging of the population. Alzheimer’s and other forms of dementia are found mostly in those over 65, though hundreds of thousands develop it sooner. It develops as the result of the build-up of proteins in the brain called plaques and tangles, but there is no explanation for why this build-up occurs.
“Plaques are abnormal build-ups of a protein called beta amyloid between brain cells,” Prasad explains. “Tangles are abnormal connections between the brain cells. Both are found in Alzheimer’s disease and are part of why the brain function declines.”
Tangles and plaques appear in the brain before symptoms are present, and while Alzheimer’s affects each patient differently, some key symptoms include significant memory loss, confusion with time and place, difficulty performing familiar tasks, changes in mood or personality, vision changes, and decreased judgment.
“A lot of the tell-tale signs of Alzheimer’s disease are significant changes in memory and thinking that are affecting someone’s day-to-day life,” Sarah Lovegreen, vice president of programs for the Greater Missouri Chapter of the Alzheimer’s Association, explains. “It’s not, ‘I forgot where my car keys are,’ but instead all of the sudden having trouble paying bills or cooking a favorite recipe.”
Lovegreen says that individuals who develop Alzheimer’s before the age of 65 exhibit these symptoms quicker and have a shorter life expectancy compared to older patients, who may live with the disease’s steady progression over 10 to 20 years.
While research for existing Alzheimer’s disease in patients largely focuses on which pharmaceuticals are effective, a lot of research is also focused on preventing it to begin with. The Alzheimer’s Association provides care and resources for patients and caregivers and promotes health education, but it’s also the largest nonprofit funder of Alzheimer’s research globally.
“The areas where we have our greatest growth opportunities in research are around what preventative things we can do from a lifestyle perspective,” Lovegreen says. “Research results that came out this past summer showed that if we can progressively control blood pressure, we actually can reduce the risk of mild cognitive impairment — which for many people will lead to Alzheimer’s disease or other dementia — by almost 20 percent. That’s a big number.”
Prasad agrees that prevention research is yielding exciting results.
“There is a growing body of evidence, some of it controversial, that if women maintain hormonal normality at menopause, they will be less prone to developing Alzheimer’s disease,” Prasad says. “This must be [accomplished] by the utilization of bioidentical hormones, not pharmaceuticals. Bioidentical hormones are best delivered via implantable hormone pellets and compounded creams. However, if these are started after age 65, they may actually be harmful in selected cases.”
In the absence of a surefire preventative measure for Alzheimer’s disease, Lovegreen and Prasad agree that it doesn’t hurt to lead an overall healthy lifestyle.
“In my opinion, we should all focus on staying healthy and minimizing the chance of developing this disease by regular exercise, clean dietary habits, maintaining hormonal balance, sleeping six to eight hours per night, and minimizing alcohol intake,” Prasad says. “These have been shown to definitively reduce the risk of Alzheimer’s as well as other debilitating diseases such as heart disease, cancers, and diabetes, to mention a few.”
Lovegreen adds that smoking, a major risk factor for heart disease, is a good habit to kick.
“What’s good for the heart is also good for the brain,” she says. “We’re finding that more likely to be true. Take the time to take care of yourself.”
Steps Following Symptoms
Individuals on Medicare receive yearly wellness exams that include screening for Alzheimer’s and other dementias, but those under 65 may not receive that screening at an annual physical. That’s why Lovegreen says speaking up at the first sign of cognitive changes is important, especially with some patients waiting as long as nine months to be seen by a neurologist or other specialist.
“When you see some of those changes that don’t make sense, bring them up to your doctor and ask them to look into it,” Lovegreen urges. “Bring a spouse, family member, or friend to the appointment. If you’re having cognitive impairments, you may not have the whole story. Have them talk about any changes they’ve seen.”
The Alzheimer’s Association offers many ways for people to get involved in the cause. In addition to donations, participating in events like the Walk to End Alzheimer’s and the Longest Day, an event featuring multiple healthy activities that occurs annually on the summer solstice, raises funds for research, outreach, and education.
The Alzheimer’s Association also has an information line that connects callers with dementia specialists 24 hours a day. Specialists are able to answer questions on topics ranging from understanding test results to what to do if a loved one shows signs of the disease.
Alzheimer’s Association’s 24/7 Helpline: 800-272-3900
The Professional Dementia Caregiver
“Taking care of my residents has a lot to do with just being there for emotional support, as well as keeping them safe and comfortable,” says Chelci Rogers, nursing supervisor in the memory care unit of Heisinger Bluffs in Jefferson City, which has 20 beds for dementia residents.
Chelci, 30, started at Heisinger Bluffs in 2008 in housekeeping. Her dream was to be an architect, but working with the residents inspired her to go to nursing school instead, and she’s never looked back.
Chelci and her staff have specific training to care for Alzheimer’s patients, most of whom are in the middle stages of the disease and can manage day-to-day life with a little prompting from staff. There are at least two staff members on duty at all times to provide help and support.
“Overall, for a dementia patient with their irregular sleep cycles and their difficulty adjusting, it’s just good to have somebody who is trained in dementia specifically to be there for them,” Chelci explains. “And they’re safe. Safety is a huge thing.”
The memory care unit is locked, so residents cannot leave on their own and potentially become lost, the risk of which is a major reason why families consider placing loved ones in memory care facilities.
Chelci says that every single family who considers placing their loved one with dementia at Heisinger Bluffs feels guilty and as though they have failed as caregivers, which she says is natural.
“I let them know that this is the safest thing for them,” Chelci says. “The staff here loves the residents just as they would love their own family member. We are taking care of them as much as we possibly can, and honestly, we’re probably doing it better than they can because we get a break. If it had to be a 24-hour-a-day thing for one person, we probably couldn’t do it either. The statistics of caregivers who end up sick and unable to take care of their loved ones are huge.”
Chelci tells caregivers that the earlier they get their loved one with dementia into a care facility, the easier the adjustment period is for patient and family alike.
“As a caregiver, you can really just relax and see them happy in what is their home now. My residents love to host their family members. They’re proud to have their own space again and a sense of independence.”
For Chelci, fulfillment comes from seeing her residents safe and comfortable and their families at ease. And it’s comforting to know there are caregivers like her out there.
“I love what I’m doing,” she says. “I wouldn’t change it. This is where I belong.”
Living with Early-Onset Alzheimer’s
“I knew something was wrong,” Debbie Grosvenor remembers back to 2016 when she started to notice behavioral changes in her husband, Gregg. He was losing things, repeating himself, had tremors, and had become dangerous driving. “I thought it was a mild stroke,” Debbie says.
Debbie contacted Gregg’s physician and asked for a referral to a neurologist. After seeing several doctors and enduring many exhausting tests, Gregg was diagnosed with early-onset Alzheimer’s disease at the age of 57. The specialist suspected it probably started to take hold when he was 54 or 55.
“It’s lousy,” Gregg says. “It’s a disease you try to hide a little bit. You know something is wrong, but you can’t put your finger on it.”
Now 59, Gregg is soft-spoken with blue eyes and a gentle smile. He and Debbie were married in Tipton by Gregg’s grandfather in 1985. They’ve raised two children, Dave and Amanda, who live nearby with their spouses, and have four grandchildren.
Gregg spent his life on the road as a sales representative for General Mills. No longer being able to drive has dealt a shattering blow to his independence. The dementia has progressed to middle-stage, which means he becomes confused by seemingly easy things, like working on his computer or navigating the buttons on the TV remote. He also tires easily and isn’t able to enjoy golfing, fishing, and tinkering in the garage like he used to.
“I have a hot rod that I can’t touch, which is no fun,” Gregg laments. “I can’t do anything or go anywhere, basically.”
Caring for Gregg at home has become a family affair. While Debbie works full-time as an office manager for a dentist’s office and is Gregg’s primary caregiver, Dave and Amanda and their families, along with Gregg’s mother, brothers, best friend, and neighbors, can all be counted on to help out around the house, take Gregg to doctor’s appointments, and check in on him when he’s home alone.
But he’s never totally alone, thanks to Fancy Pants, Gregg’s beloved Yorkie-bichon frise mix. A lifelong dog lover, Gregg dotes on Fancy Pants, a fully certified therapy dog.
“She’s my everything,” Gregg says. “She’s with me all the time. We go on walks, she sleeps with me, we spend a lot of time together. She’s just a really good girl.”
For as hard as the disease in on Gregg, it’s been just as hard on the entire family, and Debbie in particular. Gregg’s diagnosis in 2016 came just before her mother’s death from Alzheimer’s later that year; Debbie was her full-time caregiver as well. Debbie suffered a heart attack in 2017 from the stress of being a caregiver and rarely gets a break. But she does regularly attend an Alzheimer’s Association support group that she highly recommends to other caregivers.
“Everybody is going through this with a family member,” she says about the group. “People can say they understand, but they don’t know unless they’ve lived with it. The support group feels like family.”
A source of hope for the family is a clinical trial set to begin later this year that Gregg is enrolled in. Debbie, too, is enrolled in the trial, because of her family’s history with the disease, and is enduring the same grueling tests as Gregg. They also look forward to spending time together, taking trips as a whole family, like the one they took to Panama City Beach last summer.
In the coming years, the unrelenting disease that has so unfairly afflicted Gregg at a young age will likely continue to take him farther from who he is, who he was, and the family who holds him dear — a family that is the very picture of strength, bravery, and love. But for Gregg, the disease has not determined his future just yet, and he’s not done fighting.
“You can’t predict the future,” Gregg says. “You can’t dwell on it.”
Q&A with Rhonda Uhlenbrock
Rhonda Uhlenbrock began her career in long term care in 1988 as a social worker. She is currently providing education and training as the memory care director for StoneBridge Senior Living. Her love of working with those affected by Alzheimer’s disease has led her to facilitate Alzheimer’s support groups for the Alzheimer’s Association and act as one of their community educators.
How is the disease changing in prevalence?
The number of people with a diagnosis of Alzheimer’s disease or related dementia is expanding at an alarming rate. There are currently 5.7 million in the United States, according to the Alzheimer’s Association, and 110,000 in Missouri alone.
What are the contributing factors?
One is that people are living longer. The number one risk factor for Alzheimer’s Disease is age. Two, we now have enhanced diagnostics and awareness. In the 1980s, people were only diagnosed at autopsy. Today, due to enhanced assessments both technically and cognitively, diagnoses are more readily given.
How do diagnoses in America compare to other countries?
According to Alzheimer’s Disease International, there are 44 million people with Alzheimer’s disease or a related dementia. The largest percentage per capita is Western Europe. North America is right behind. The least prevalent is sub-Saharan Africa.
What should people know about Alzheimer’s that you think they may not?
There are some very painful diseases for individuals, such as cancer, congestive heart disease, etc. But with Alzheimer’s disease, to watch your loved one lose their abilities and their personality is tough. And it is not a quick process. Families do not give themselves enough credit for their efforts.
What are the best ways to prepare for becoming a caregiver?
Ask questions and join an Alzheimer’s support group. There is so much good information on the disease process.
What are some resources for caregivers or people living with Alzheimer’s?
For caregivers, there is a support group on the second Thursday of every month from noon to 1:00 p.m. at Capital Region Southwest Campus in the Oakview Conference Room. For those with memory impairment, I recommend adult day programs. These give people with cognitive challenges the opportunity to be with others like themselves, and it offers the caregivers a break two or three times a week.
Contact Rhonda at 636-477-3280 or Rhonda.firstname.lastname@example.org to schedule a free community presentation or learn more about the disease process and resources.