A lot of work goes into the care and maintenance of being human. There are annual physicals, well-woman visits, checkups at the optometrist. We get blood tests, feel for lumps, monitor blood pressure, listen to our hearts. Go to the dentist, and it’s already time to schedule the next cleaning.
The irony is that in this whole routine, memory is often forgotten.
I know this intimately. When my own mother was diagnosed with early onset Alzheimer’s disease, she seemed to be a portrait of health. Active and vibrant, she led church meetings, cooked dinner every night and operated a car—but we discovered she no longer knew how to tell time, couldn’t tell you the year and had no idea who the president was. Cognitive tests were not part of her routine medical checkups, and there was no reason for my family to question her.
Yet memory is arguably one of the most important facets of health. When the mind declines, so does everything else.
Our elders knew this. In ancient Greece, it was believed that royalty and powerful leaders were protected by the goddess of memory, Mnemosyne. She was also mother to the nine muses, which meant that all science, arts and literature were descendants of memory. The Egyptians understood the heart sustained life, but they also believed that memory stemmed from that organ as well. And in ancient Rome, memory was thought of as one of the best ways to understand the self. Artists, leaders, writers and orators all used memory-training devices to sharpen their skills, thus living their fullest lives.
So what happens when memory begins to falter?
There’s a spectrum of cognitive changes in older adults and sometimes younger adults, but it all comes down to the fact that the mind isn’t working in some way. Maybe the person is leaving the door unlocked. Maybe they’re having trouble remembering the right word to say or making mistakes in their finances. Some of these are normal, age-related changes, but they can be indications of a bigger problem.
The first step is to have a discussion about your concerns (or your concerns about a loved one) with a primary care physician. The doctor will usually administer a cognitive assessment test, but the patient might also receive additional screenings—anything from blood pressure to neuroimaging—checking for other diseases that might lead to cognitive decline.
“When your primary care doctor says you need to go to a specialist, that’s where we come in,” says James Ellison, M.D., a geriatric psychiatrist who oversees every facet of care at Swank Center for Memory Care and Geriatric Consultation at ChristianaCare. The approach here is interdisciplinary.
“The point is to offer families education, guidance and support through every aspect of this, from the initial diagnosis through treatment,” Ellison says. On-site screening assessments are performed so the patient’s full cognitive, functional and behavioral status is understood. Patients might see a neurologist, geriatrician, social worker, geriatric psychiatrist or neuropsychologist.
“If you’re concerned about a slip of the memory, that’s oversensitive. We can’t conclude anything based on that. There are many reasons memory can fail, which is why a thorough evaluation is so important,” Ellison continues. “It helps to have an objective assessment. The same way an emergency room doctor who is dealing with COVID-19 is going to freak out whenever they cough, all of us observe ourselves, and when there’s a slip, we wonder what it means.”
It could mean that the patient is one of approximately 19,000 people across Delaware living with dementia or Alzheimer’s disease. (What’s the difference? Alzheimer’s is a specific disease, while dementia is a general term for the decline in mental ability that interferes with daily life. Alzheimer’s is the most common form of dementia, but many other types exist.)
Once someone is diagnosed with Alzheimer’s or another form of dementia, a treatment team will communicate with the patient’s primary care providers. There will also be referrals for resources and caregiver support.
“At that point, if we think you have a cognitive problem, then we can discuss what are the implications,” Ellison says.
Though there is no cure for Alzheimer’s, there are more than 100 medications in trials right now, which is promising. Some cognitive-enhancing medications like Aricept are already in use, although it’s difficult to gauge the impact of the drugs. Also, it might take time for doctors to find the right combination for you or your loved one.
“It’s like wearing garlic to keep vampires away,” Ellison says. “You wear it and look around: Do you see any vampires? But if you didn’t wear it, would you have seen any vampires?”
More than 5 million Americans are living with Alzheimer’s now, according to the Alzheimer’s Association. By 2050, that number is projected to reach 14 million.
Some populations are more vulnerable than others. Virtually 100 percent of individuals with Down syndrome will develop the pathology in the brain associated with Alzheimer’s. Half of people with Down syndrome will experience onset by the time they reach their 60s.
“To me, it’s like a tsunami that’s getting ready to come,” says Terri Hancharick, Chair of Adult Issues Committee for the Delaware Developmental Disabilities Council (DDC). “This is the generation that’s living longer, and this is going to be a problem. I wonder if the government agencies are ready for this. There won’t be enough housing, there won’t be enough care.”
Teesie Bonk has been a longtime advocate for adults with intellectual and developmental disabilities, motivated by her brother, Michael McNesby. He had Down syndrome that developed into early onset Alzheimer’s before his death in 2018. Bonk says the biggest lesson she learned was to listen to the person’s needs, whether they’re coping with Alzheimer’s, another form of dementia or some other disability entirely.
“You have to listen to what the person says,” she urges. “Be mindful of their needs and respect where they are in their lives. When you’re in denial or don’t get the help your person needs, you’re only hurting the person who has Alzheimer’s.”
Maggie LaScala has navigated this terrain as a caregiver for her mother, Alecia LaScala, who was diagnosed with Alzheimer’s in 2012. What made it even more daunting is that the family had some idea of what was to come—before Alecia’s diagnosis, she cared for her older twin brothers, both of whom had Alzheimer’s.
“When my mom started to notice she couldn’t find her words or when she forgot an appointment, it sent her into a tailspin because she knew how this would end. She always had a feeling she would get it,” Maggie says. “We did the Walk to End Alzheimer’s every year for 25 years. And every year, she’d say, ‘I’m walking for me.’”
Before her diagnosis, Alecia worked for 32 years at the same orthodontist’s office, where she was known for being the nurturer.
“The doctor would always send the kids to her, because she was so good about calming their fears,” Maggie says. “We’d walk down the street and all the kids knew her. She was always recognized, always loved.”
Beyond memory loss, Alzheimer’s manifests in different ways in different people, including anxiety, depression, agitation and problems with sleeping. In LaScala’s case, the woman who loved people could no longer tolerate having strangers in her home, which made in-home care impossible.
“It was progressing to the point where her moods were unpredictable,” Maggie says.
The move to an assisted living facility, however, was fraught with problems. One was not equipped to care for patients with agitation; another overmedicated her. Eventually LaScala’s mom ended up at a memory care center in North Wilmington.
“It’s tough, but at least this way, I have time. I would never want to lose her suddenly,” says Maggie. “You know how this disease is going to go, but you try to make the best of it while you can.”