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Raising awareness about Alzheimer's through the stories of families

Jerry Howe hates when his wife cries.

But he has seen Kathy Howe's tears more often since she began having memory problems three years ago and was eventually diagnosed with early-onset Alzheimer's disease. It usually happens when she can't do the small tasks that once were easy for her.


"It rips my heart to pieces," he said. "I just try to help her with whatever she is doing because I can't stand to see her cry."

Alzheimer's completely changes the life of not just the person diagnosed with the neurological disorder, but their closest family as well.


In an attempt to raise awareness to the rippling effect of Alzheimer's, a PBS documentary about the disease will air at 10 p.m. Wednesday on Maryland Public Television.

"Alzheimer's: Every Minute Counts" features families who, like the Howes, are coping with the disease and its devastating consequences.

Alzheimer's is a chronic degenerative disease that slowly kills off brain cells and the connections between them that make up people's memories and control how they function. It can prove fatal in late stages as patients are unable to swallow and even breathe.

About 100,000 Marylanders and 5 million people nationwide live with Alzheimer's, and many are dependent on family and friends to help with everyday tasks. The cost of caring for those with the disease and other forms of dementia was about $236 billion in 2016, according to the Alzheimer's Association. Without a cure, that cost could escalate to $1.1 trillion by 2050.

The documentary also features doctors and other health care providers who treat those diagnosed with Alzheimer's, as well as researchers who discuss its impact.

Because people can live with the disease for many years, it can have long-term financial, psychological and emotional affects on families, said Cass Naugle, executive director of the Greater Maryland Chapter of the Alzheimer's Association.

"Families really do underestimate the toll that it takes," Naugle said. "It is 24-hour vigilance."

Although the Alzheimer's Association was not involved in the making or funding of the documentary, the organization is promoting the film as part of its mission to raise awareness about the disease and about the services available to help families. The association also wants people to spread the message about the importance of funding research to find better treatments and a cure.


At least one critic of the documentary said it paints too gloomy a picture of Alzheimer's in an effort to push for research funding.

Al Power, an associate professor of medicine at the University of Rochester, also said the film doesn't do enough to show that people can live fulfilling lives even with the disease.

"This is being presented completely from the viewpoint of crisis and tragedy," Power said. "I am not saying it's easy to live with Alzheimer's. I am not saying it is easy to care for someone with Alzheimer's. But having the disease doesn't have to be all bad."

But Carmel Roques, CEO of Keswick, a company that provides health care services to chronically ill older adults, including those with Alzheimer's and other forms of dementia, said documentaries are a good way to bring attention to issues.

Families of Alzheimer's patients often find themselves thrust into a role for which they aren't prepared. As a loved one's memories fade, caregivers often have to step into more and more aspects of the Alzheimer's victims' lives. Spouses go from being partners to having one person be the sole decision-maker in the relationship.

"It is not like when someone you love dies and then you grieve and have to adjust," Roques said. "They keep changing and you have to adjust and it happens again and again."


Taking care of someone with Alzheimer's also can prove financially daunting. Many with the disease can't be left alone at home and end up living with friends or relatives. If those relatives have to work, there is the cost of adult day care or hiring someone to watch them.

The documentary hopes to give families some insight on services that can help them deal with the logistics of caring for someone with Alzheimer's, Naugle said.

"The disease is baffling and challenging, and people often don't know where to turn," Naugle said.

After the one-hour documentary airs, the Alzheimer's Association, filmmakers and other groups will use community engagement and social media to keep the message alive.

Jerry Howe first noticed his wife was having problems when she phoned to say she couldn't find the location of a board meeting she was scheduled to attend. She also didn't know where she was at the time of the call and couldn't find her way home.

Kathy Howe's memory got so bad she quit her job running Days End Farm Horse Rescue, the animal welfare organization she founded more than 25 years ago.


Doctors initially attributed her memory loss to ministrokes but eventually diagnosed early-onset Alzheimer's.

Life has changed for the pair. They moved from their much-loved Howard County farm to a smaller, more manageable home in Pasadena that Jerry Howe owned before the couple married a decade ago. Jerry, 66, is a software engineer for Verizon and tries to work from home most days. Kathy, 65, sits at a computer next to Jerry's, playing solitaire.

Kathy doesn't like to be alone at home and gets anxious when her husband must leave for work. Jerry constantly worries when he's away because sometimes his wife forgets to eat.

Kathy tears up when she talks about having Alzheimer's.

"It's hard because I used to be so independent and run a whole organization, but now I can no longer do any of that," she said.

Jerry knows that as he gets older he won't be able to take care of Kathy by himself. For now, he said, he tries to take things one day at a time.


He lets Kathy do some tasks on her own, such as making coffee. But sometimes she tries to fill the pot twice. This happened one recent afternoon and the pot overflowed.

"Uh oh," Kathy said with a laugh as Jerry ran patiently to turn the pot off. "I do this sometimes."

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Laughter and positive thinking help them cope.

"I dance great," Kathy said. "That didn't go away. That's fine."

Kathy also likes to take long walks in her neighborhood when she gets bored or frustrated. Jerry often comes with her and has lost 60 pounds as a result.

But most of all, Kathy is glad she has Jerry.


"I am lucky," she said.