Dealing with Dementia

Dealing with Dementia

Types of memory loss vary, but the effects can be profound

Rosemary Pagura of Elk Grove Village and her friends thought little of it when Rosemary said she couldn’t remember where she put the dessert for their party. “We all laughed. But the next day, when I found the dessert right in the very front shelf of the refrigerator, it scared me,” says Rosemary, who is 79.

Such memory lapses can be scary and prompt people to worry they’re developing dementia. But while it’s normal to experience mild forgetfulness from time to time — misplacing car keys, missing an appointment or forgetting where the car is parked — dementia, on the other hand, is marked by steep, serious decline.

Types of dementia

When people say they worry about developing dementia, they are often referring to Alzheimer’s disease. But Alzheimer’s disease is just one of several types of dementia.

“Dementia is the umbrella term for loss of memory and other mental abilities caused by physical changes in the brain,” says Concetta M. Forchetti, MD, PhD, medical director of the AMITA Health Neurosciences Institute Center for Memory Disorders.

About 60% to 80% of dementia cases involve Alzheimer’s. The next most common forms of dementia are vascular dementia, Lewy body dementia and frontotemporal dementia. Some people have more than one type of dementia, known as mixed dementia.                                                                                                           

While more than half of Americans over age 85 may have some type of dementia, it is not a normal part of aging, experts stress. Dementia is the loss of cognitive functioning — thinking, remembering and reasoning — and behavioral abilities to such an extent that it interferes with a person’s daily life and activities, Forchetti says.

People with dementia might notice changes in functions such as memory, language skills, visual perception, problem-solving, self-management and the ability to focus and pay attention. Some cannot control their emotions, and their personalities may change.

Initially hit with the diagnosis, as the care provider, you feel like you are in deep water and don’t know what to do.”

Dementia results when nerve cells— called neurons — in the brain stop working, lose connections with other brain cells and die. While it’s typical for individuals to lose some neurons as they age, people with dementia experience a much greater loss.

Reaching a diagnosis includes a physical exam and tests to rule out conditions — such as vitamin deficiencies, depression, alcohol abuse, side effects of prescription medicine, and thyroid, kidney and liver problems — that can cause dementia-like symptoms.

For Alzheimer’s disease, some biomarker tests can help with a diagnosis, Forchetti says. The presence of beta-amyloid and tau proteins may be an indicator for Alzheimer’s disease.

Tests that look for beta-amyloid and tau proteins in either the cerebral spinal fluid or the brain tissue itself — as well as tests for the APOE e4 gene, which may increase risk for developing Alzheimer’s disease — show promise, although Medicare and other health insurance plans may not cover the tests.

Emotional rollercoaster

While individuals with dementia lose some of their memory — especially their short-term memory — they can still experience strong emotions, says Tessa Garcia McEwen, LSW, a medical social worker for The Memory Center at UChicago Medicine.

Imagine the brain as a bookshelf with books missing, McEwen says. This image illustrates how dementia can affect memory and cognition, but individuals can still feel emotions such as love, happiness, warmth and connectedness — although their ability to express emotions may change.

Think of the many books missing on the top shelves like impaired functions in the front of the brain, where short-term memory resides, along with the capacity to communicate, make complex decisions and complete tasks.

“The ‘books’ that largely remain are on the bottom shelves — similar to the back of the brain, where all the various emotions, as well as long-term memories, are,” McEwen says.

Though individuals with dementia may have memory lapses, they also have moments of lucidity and clarity, McEwen says. “While they may have less ability to communicate verbally, or while they may forget [things] the next day, they [may] still feel everything and absolutely enjoy the present moment they are having with their loved ones.”

Likewise, people with dementia also experience stress, anxiety, fear, embarrassment and anger. When such emotions arise, reassuring the person in a calm, compassionate manner “can help caregivers de-escalate situations that otherwise — when the person is touched, challenged, corrected or quizzed — could escalate to a point of aggression,” she says. 

Dealing with Dementia - Chicago Health Magazine

Fighting progression

When Rosemary Pagura exhibited increasing memory lapses, her husband Frank Pagura and their daughter and daughter-in-law encouraged her to see a doctor. She was diagnosed in 2015 with amnestic mild cognitive impairment (MCI), which falls between the typical cognitive decline of normal aging and the steeper decline of dementia.

People with MCI have a slight, but noticeable decline in memory and thinking skills. They are at greater risk for developing Alzheimer’s disease or other types of dementia than those without MCI, according to the Alzheimer’s Association.

Rosemary is taking steps to prevent progression of her condition. Among them: participating in AMITA Health clinical research trials for medications to treat Alzheimer’s and joining her husband in working out at an Elk Grove Village fitness center.

She and Frank speak at events sponsored by the Illinois chapter of the Alzheimer’s Association and participate in support groups for people with Alzheimer’s disease and their primary caregivers.

“I am proactive about telling my story because I am the youngest of 10 children. Three who have passed had Alzheimer’s,” Rosemary says.

“I feel good. We celebrated our 55th wedding anniversary with a cruise in Italy,” she adds. “I made up my mind I was going to fight the condition from progressing.”

Diet can help

Researchers continue to focus on why some people develop Alzheimer’s disease and other forms of dementia and others do not.

Risk factors, researchers say, include obesity, high blood pressure, limited physical and mental activity, a diet low in fruits and vegetables, and a family history of Alzheimer’s.

The MIND diet (Mediterranean-DASH Diet Intervention for Neurodegenerative Delay) helps brain and cardiovascular health and may help protect against the development of dementia, studies suggest.

The eating plan combines two healthy diets: the anti-inflammatory Mediterranean diet and the DASH (Dietary Approaches to Stop Hypertension) diet to control blood pressure, says Laurel Cherian, MD, a vascular neurologist with Rush University Medical Center.

“The MIND diet [has] additional emphasis on nutrients shown to be particularly beneficial for brain health, such as leafy green vegetables and berries,” Cherian says.

The diet incorporates fruits, vegetables, leafy greens, beans, nuts, whole grains, fish, poultry, and very limited amounts of red meat, fast food, pastries and sweets.

The goal is to emphasize foods that reduce the risk of heart attacks and stroke and also keep the brain resilient. “We also know from research done here at Rush that the MIND diet is associated with less cognitive decline after stroke,” Cherian adds.

A team-based approach

An interdisciplinary care approach assists people with quality-of-life issues, McEwen says.

“While the neurologist focuses on diagnosis and treatment, the advanced practice nurses assist with follow-up visits, medication adjustments and symptom management,” McEwen says. “Physical therapists can assist with simple exercise plans to maintain mobility, which is crucial to brain health, and certified nurse assistants can assist with bathing and grooming as needed.”

Other professionals help, too. Medical social workers help people with dementia and their care partners find support groups, opportunities for social engagement, recreational resources and care planning for memory care communities or for aging in place in their home. They also coach families in communication techniques, navigating the costs of care and adjustments to living situations.

Speech-language pathologists provide cognitive neurorehabilitation and memory strategies. And occupational therapists assist with skills of daily living and setting up a home for optimal safety and accessibility. All specialties add an important part to interdisciplinary care.

Keeping perspective

As with any serious illness, individuals react differently to the news that they have dementia.

Some people want to face it head-on and are determined to enjoy life as much as possible for as long as possible. Others, when told they have dementia, immediately envision themselves in the final stages of the disease, having difficulty eating and needing full-time help with personal care.

Rosemary says she was shocked when told she had a condition that could transition to Alzheimer’s disease. Her husband, Frank, recalls feeling similarly, adding, “Initially hit with the diagnosis, as the care provider, you feel like you are in deep water and don’t know what to do.”

The couple encourages people with dementia and their caregivers to contact the Alzheimer’s Association and other dementia-related organizations for resources and support groups.

While Rosemary and Frank work to keep positive attitudes, the couple also understands the seriousness of a diagnosis for which there is no cure, though drugs can slow progression.

“We consider ourselves fortunate to have caught this condition early enough to have the best of times we can now,” Frank says. Don’t hesitate, they say, to ask questions of your medical providers and to consider volunteering for clinical research trials, which provide access to treatments and drugs not yet available to the public.

“Involve family and friends. People want to help if they know what you need help with,” Frank says. Adds Rosemary: “If you are concerned about memory lapses, see a neurologist. Have a positive attitude, and fight, fight, fight to keep going.”

Photos on this page: Frank and Rosemary Pagura in their Elk Grove Village home. Photos by Jim Vondruska. Originally published in the Spring/Summer 2020 issue.