NEWS

From the inside of Alzheimer’s

By ED KDONIAN
Posted 10/18/23

The Cranston Senior Enrichment Center will be hosting a viewing of Greg O’Brien’s “Living with Alzheimer’s” on Tuesday, October 24, at the Cranston Public …

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NEWS

From the inside of Alzheimer’s

Posted

The Cranston Senior Enrichment Center will be hosting a viewing of Greg O’Brien’s “Living with Alzheimer’s” on Tuesday, October 24, at the Cranston Public Library’s Central Branch, 140 Sockanosset Cross Road, at 7 p.m.

“This is really the culmination of work that we started before COVID hit,” said David Quiroa, assistant director of Cranston senior services. “Back in 2017 we started our formal work around doing outreach in the community. We started teaching folks about how to recognize the 10 signs of dementia and, more importantly, about once you identify the signs of dementia how to get tested for it and get screenings.”

The film, “Have You Heard About Greg?,” chronicles O’Brien’s personal journey in dealing with the condition and the difficulties that come with being trapped in your own mind as your very sense of self changes. The film brings to light the struggles of those dealing with dementia from the perspective of one who watched his loved ones tackle the condition before being confronted with it himself.

O’Brien, a journalist himself, “put a stake in the ground” as he was faced with the same condition that he watched his mother live through and decided it was time to talk about it. Having published a book, “On Pluto: Inside the Mind of Alzheimer’s” in 2014, O’Brien has spent the last decade working to bring Alzheimer’s into the light and to help people recognize the signs and symptoms of the condition.

“I don’t know how much you know about dementia, but honestly the medical community doesn’t know much about it either,” Quiroa said. “What that results in is that your medical practitioners don’t have much information for you either. Resources are limited, which creates more anxiety once you find out you have the disease. It can be heartbreaking.”

O’Brien didn’t seek pity when writing his book or creating this film, rather he sought a way to help people understand the struggles that a loved one or friend might have while suffering from it, a message that comes through early on in his book.

“Doctors tell me I’m working off of a ‘cognitive reserve,’ a backup tank of inherited intellect that will carry me in cycles for years to come,” he wrote about coming to understand the condition through its early onset. “They tell me to slow down, conserve the tank. It’s lights out, they warn, when the tank goes dry, just as it was with my mother. In layman’s terms, the right side of my brain – the creative sweet spot – is intact, for the most part, although the writing and communication process now takes exponentially longer.”

It is the left side of his brain, the one that executive functions like balance, judgment, recognition and short-term memory that slowly begins to fade. O’Brien isn’t alone in dealing with this either.

The Alzheimer’s Association estimates that more than 6.7 million people over the age of 65 suffer from the condition, and the chances of suffering from the disease only grow as you age. “The percentage of people with Alzheimer’s dementia increases with age: 5.0% of people age 65 to 74, 13.1% of people age 75 to 84, and 33.3% of people age 85 and older have Alzheimer’s dementia,” the Association said in its 2023 report. “People younger than 65 can also develop Alzheimer’s dementia. Although prevalence studies of younger- onset dementia in the United States are limited, researchers believe about 110 of every 100,000 people ages 30-64 years, or about 200,000 Americans in total, have younger-onset dementia.”

Alzheimer’s is a condition that is not well understood, and anyone can suffer from it. The exact reason why Quiroa believes that hosting this showing is so important.

How did it come together?

“The way we came across Greg O’Brien was actually very casual,” Quiroa explained when asked how the Senior Center came to host the event. “A man named Christopher Hopkins, no relation to the mayor, walked into the office and asked to speak with someone who knew about dementia. So, the front desk called me.”

Quiroa said that as an organization is both a human service agency but also, to an extent, a municipal governing body. When the opportunity came up, through Hopkins and the film he was helping to publicize, to further continue their work in educating the community it couldn’t be passed up, especially when he heard what Greg’s story could bring to the people living in his community.

“In that context, we’ve been working in the field of dementia and Alzheimer’s, in terms of outreach to the community and support groups, since 2017,” Quiroa explained. “That was when we first got a grant from the Tufts Health Plan Foundation. At the time it was called the ‘momentum fund,’ and they would give out $10,000 grants on a yearly basis. We were fortunate to have won that grant, so we did work in 2017 and 2018, we were fortunate enough to win that grant for two more years. We continued that work in 2019, but then COVID hit.”

Every year Senior Services planned a certain amount of outreach and workshop opportunities to help educate the community on different aspects of getting older and how sudden life changes can be. While COVID put a kink in their work regarding education, in some ways they began hosting medical lectures on Wednesday’s as soon as the pandemic allowed them to, but throughout the year they’re especially focus on running “signature events.”

“Throughout the year we run these events where our effort is to include the entire family that is affected by the disease,” Quiroa explained. “In a family unit where the mother gets the condition, well now the husband is going to suffer too, the children are going to suffer too and even the grandchildren, if they're involved, will experience part of that and suffer too, because then you start the chain of caregiving.”

Alzheimer’s, Quiroa said, is a long-course disease. By the time you start noticing the symptoms, he explained, it’s already been years since the onset. Which is why when Hopkins said that he was good friends with O’Brien Quiroa knew he couldn’t pass up the opportunity to bring this film to people it may help.


Living with the condition.

“Alzheimer’s is terrible,” O’Brien writes, “but not because I fear the disease itself. Yet I know it could be my future. What I fear most is the menacing wake that Alzheimer’s leaves in its path. My father’s waning memory will one day erase his perception of who I am, who he is, and of every moment we’ve shared together. The word unforgettable has new meaning for me today.”

Quiroa said that one of the most devastating effects that this disease brings is shame. People, he explained, feel the need to hide it. Whether that is for themselves or to protect their loved ones may change person to person, but the instinct to not talk about what’s happening only serves to make the condition harder to understand and deal with.

“As a family, and the person feeling the effects of it, it’s frightening,” Quiroa empathizes. “You start struggling with so many things going through your mind. You don’t want to be a burden on your family, and you don’t want to lose your independence. As it progresses you get to the point where you lose your memory. You might leave your house to pick up your dry cleaning only to pull up to a light and all of a sudden you don’t remember where you were going. The light turns green and you start driving, but you don't know where you’re going.

Teaching people how this condition advances and the struggles that people suffering from it face can only help to remove this stigma and provide help to those dealing with it. Quiroa is excited to give people this opportunity to better know what they may end up facing, whether themselves or a loved one.

“We’re doing this as one of our night events,” he said. “When we do these night events we are able to make sure that people that are working or that are dealing with a family member with dementia are able to come. We will even have our ‘daycare’ staff present to help with seniors who already suffer from dementia and other afflictions. So, our adult day services are activated in the evening so families can bring their loved ones while they learn more about this disease.”

The film looks at Alzheimer’s from an open and honest angle. Whether you’re older and worried the condition may affect you or younger and worried about a parent the viewing is a perfect place to learn more about how to prepare and deal with Alzheimer’s.

Those looking to register for the viewing can start by calling 780-6000 or by emailing Quiroa at  dquiroa@cranstonri.org

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