Dr. Matthew Arroyo didn’t start his medical career specializing in dementia and memory disorders.

But after becoming his mother’s caregiver when she had Alzheimer’s, he not only became a more compassionate physician, he went back to school to better understand the disease. “When you live it,” said the new medical director for memory at Novant Health Memory Care - SouthPark, “you understand it much more than when you’ve just read about it in a textbook.”

With Arroyo’s mom, it was her husband who first saw the signs. She became forgetful, struggled to keep track of her finances. She was like most Alzheimer’s patients in that someone else noticed her memory issues.

“People with memory loss don’t generally notice the loss,” Arroyo said. “They’re often resistant to pleas to see a doctor. Once at the doctor’s office, they’ll say things like, ‘Why am I here? Everything’s fine.’ It’s especially hard because someone with dementia loses both their insight and their judgment. That’s why they often think they can still drive when everyone around them knows they shouldn’t.”

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Arroyo’s mother, Millie, “didn’t get the best care,” he said, and she died young – she was in her early 50s when the signs first appeared. His grandmother and great aunts also had dementia. “I saw how dementia patients were sometimes treated,” he said. “People’s misperceptions make it hard. There’s a stigma; some people still think of dementia patients as having a psychological disease​.”

We talked with the physician, who moved to Charlotte in October, about dementia, how it’s diagnosed and treated and the importance of caregivers practicing self-care.

Are Alzheimer’s and dementia synonymous? If not, what’s the difference?

Alzheimer’s is a type of dementia – just like blue, green and red are colors.

Underneath the title of dementia, you have subcategories – Alzheimer’s, Lewy Body dementia, frontotemporal dementia, post-traumatic dementia, Parkinsonian dementia and vascular dementia.

What are some early signs?

People in the early stages of dementia show signs, primarily, of memory loss, but may also present with behavioral and personality changes. They will often deny they have any issues.

They can become easily agitated. They lose their inhibitions. Someone who’d always been a straight arrow might start cursing. I tell family members: “That’s not them. That’s the disease. They’re still in there.”

What about driving? It must be hard to suggest to a loved one that, for safety’s sake, they need to hand over their car keys.

It’s a challenge. Sometimes a patient will tell me they’re still driving and have no problems behind the wheel. And then a family member will correct them and say, ‘You’ve actually had a couple of accidents.’ No one wants to give up their freedoms, and giving up driving is one of the hardest.

I’ve heard of patients driving out of town until they run out of gas and then being unsure what to do next. One patient’s family took his keys away, so he took a golf cart and drove it down the streets of Myrtle Beach.

How are the various dementias diagnosed?

First, it’s important to get diagnosed. Many people write off forgetfulness as a standard part of aging. I encourage people to see their primary care doctor soon after they, or others, notice symptoms. There are treatments we can begin to slow the course.

Once someone’s in my office, we begin by taking a complete medical history and asking the patient, and any family members who’ve joined them, about memory loss and related issues. Even if the patient doesn’t appear concerned, the family is.

We have to ensure the diagnosis is correct. We can’t jump automatically to dementia. Other things can cause memory impairment, including, for example, lack of sleep, too many medications or alcohol.

Until fairly recently, diagnosing dementia was hard. We used to have to exclude everything else and arrive at a diagnosis by process of elimination. Now, we have PET scans, CT scans and MRIs. Imaging allows us to find out much earlier than we could even a few years ago.

What can we do to stave off or slow the disease’s progression?

Exercise, exercise, exercise. Cardiovascular health is so important. You’ve got to get blood to the brain. Also, keep your mind engaged. Active learning is so important – not passive learning, like watching TV. It’s important to make the distinction between the two.

If you have sleep apnea, use your CPAP. People with severe, untreated sleep apnea are at risk for dementia.

We can also slow it down through medication such as lecanemab by Eisai, which is administered through an IV. The data looks promising.

Once it’s diagnosed, what happens next? Do you stage it the way an oncologist would tell someone with cancer whether it’s Stage 1, 2, etc.?

The federal government says there are seven stages of dementia ranging from “no cognitive impairment” to “very severe cognitive decline.” But doctors typically talk about two stages (mild to moderate, moderate to severe) or three stages (mild, moderate, severe).

After a diagnosis, we’ll introduce the patient and family to social workers, counselors and the local Alzheimer’s Association chapter. (In Charlotte and Winston-Salem, that’s the Western Carolina chapter of the Alzheimer’s Association. In the Wilmington area, it’s the Eastern Carolina chapter of the Alzheimer’s Association.) There’s an entire team of people ready to help.

At what age are people usually diagnosed?

I’ve seen people as young as 45 with early-onset Alzheimer’s. But usually, people are in their 50s, 60s and up.

You cared for your mom when she was sick. So, you have respect and compassion for people traveling that same path.

Yes. Caregivers are the first line of defense. They know the patient best. They help keep them calm, help monitor their sleep, get them to their doctor’s appointments. It’s a tough job. We often speak of the “36-hour days” caregivers have. It can become a full-time job.

Caregivers need to decompress and take care of themselves. They need to eat right, exercise, practice good sleep hygiene. And they should ask other people to help occasionally. No one should do this alone.

Both the caregiver and patient have to get good sleep. Dementia patients are easily agitated, and sleep deprivation makes them more so. A lot of dementia patients are prone to sleep all day and be up all night.

I suggest caregivers and the patient they’re caring for try to regulate their sleep/wake cycles.

The elderly mother of a friend wound up in the hospital for a few days with a serious urinary tract infection (UTI). She became severely confused, and her dementia was worse after that. Should families watch for this?

A UTI in someone elderly can cause confusion and delirium. That’s not the same as dementia. But when dementia is in the picture, we have to be very concerned with UTIs.

UTIs in older adults can show up not with the usual symptoms, such as a frequent urge to urinate or painful urination, but as delirium. UTIs don’t cause dementia. But for someone who has dementia, they can speed up their decline.

What about sundowning? Are dementia patients really worse at night?

Sundowning – becoming confused and restless as daylight fades – is a common symptom of dementia.

You can see how it happens. In the elderly population, vision and hearing are diminished. If a younger person hears a noise outside at night and is worried, he’ll go outside, look around and see there’s nothing there. But an older person, with diminished eyesight and hearing, goes outside, can’t see or hear well and consequently becomes even more anxious.

So, it’s important for everyone – but especially seniors – to have their hearing and vision checked regularly. And if you need them, wear hearing aids and glasses.

Is dementia inevitable for people over a certain age?

No. In general, memory diminishes over time. But not always. There are some 100-year-olds who are still cognitively intact.

Are there myths or misconceptions about dementia you’d like to dispel?

People think all types of dementia are not treatable, but normal pressure hydrocephalus dementia can be.

What’s giving you hope these days?

The new drugs and treatments now being developed.