AP NEWS

Group Working to Make Living with Dementia Less Overwhelming

April 16, 2019

BILLERICA -- Joan Parcewski was 13 years old when her grandmother began showing signs of dementia. At the time, she had no idea what dementia or Alzheimer’s was, she just knew that her grandmother had changed.

She recalled how her grandmother began doing odd things like insisting there was an old man outside the house, who needed to be let in for coffee. At first, Parcewski said that she tried to tell her grandmother there was no such man outside, but Parcewski’s mother told her to go along with it, and she did.

“And she was happy and we’d sit down and we’d have a conversation with this imaginary person like little kids do when they have their imaginary people,” said Parcewski.

Years later, Parcewski’s aunt and then her mother both began showing signs of dementia, but it manifested itself in different ways. Parcewski’s aunt became aggressive with some family members and could not remember others, while Parcewski’s mother began calling with strange stories like her mail had been stolen and favorite past times like reading became confusing.

When Parcewski’s grandmother and then her aunt began suffering from dementia, there was not much in the way of resources for those living with dementia and their caregivers. Dementia certainly was not discussed publicly.

“People didn’t talk about stuff like that. It was their secret,” said Parcewski.

In 2011, around 600 people in Billerica, or 12% of those ages 65 and up, were suffering from dementia, according to Dementia Friendly Billerica. Roughly 120,000 people are suffering from it in Massachusetts. That number is expected to reach 150,000 by 2025.

Despite dementia’s prevalence, awareness and dialogue surrounding dementia is low. That is why a group of residents, town employees and organizations have teamed up to launch Billerica’s Dementia Friendly Initiative.

The initiative takes a multi-pronged approach to raising public awareness and supporting those afflicted and their caregivers. It started after Billerica Director of the Council on Aging Jean Bushnell and professionals in the healthcare industry, including Daria Rabkin from Brightview Senior Living, noticed an increase in the number of people suffering from dementia.

“All of a sudden it became quite obvious that this is happening and we need to get more involved,” said Bushnell.

Parcewski quickly joined the effort.

“Many years ago I made a promise to myself that I would get involved,” she said.

The initiative started with a simple awareness campaign to help educate the public and those in the health care industry. It got off to a bit of a slow start. When they set up a booth at the annual Health and Wellness Fair last year, folks shied away, perhaps due to the stigma and fear surrounding the word, according to Bushnell.

The first ever Dementia Day, held in September last year, was a different story. Dedicated to educating people on what dementia is, what the signs are and what the options are for living with it, Bushnell said the event had overwhelming attendance.

The initiative has since branched out to other areas including introducing memory cafes at the library and Purple Table at local restaurants. Memory Cafe is a seasonal program that offers different activities, such as concerts for those suffering from dementia and their caregivers. As important as it is to ensure that those with dementia are well cared-for, their caregivers also need support. That support includes ways to get out into the community.

“It’s overwhelming and it’s lonely,” Bushnell said.

Parcewski recalled a time when her mother had a strong reaction to a new drug while at the grocery store with Parcewski and Parcewski’s son. She started screaming that Parcewski and her son were raping her and trying to kidnap her from the parking lot. It was a tense situation as Parcewski then found herself explaining what was happening to police who arrived on scene.

“Those are the kinds of things caregivers go through,” Parcewski said.

Like the Memory Cafe, Purple Table addresses the needs of those living with dementia and their caregivers. Where most restaurants might be too noisy and the menu large and overwhelming for dementia patients, Purple Table trains restaurants to seat Purple Table diners in a quiet section and offer customized menus designed to keep options simple and easy.

All a guest has to do is request Purple Table seating.

So far, two Billerica restaurants, The Emerald Rose Restaurant and Pub, and Stelio’s Family Dining, are participating. They are two of 13 restaurants participating in the state.

Most recently, the town held dementia friendly training for town employees at Town Hall. The training aimed to help employees understand not just the signs of dementia, but the obstacles that those living with dementia face. An every-day task like brushing teeth may seem simple, but to someone with dementia, the multiple steps involved -- like unscrewing the cap on the toothpaste and running the toothbrush under water -- can be confusing.

“Maybe there’s a reason why one person is taking longer at the checkout table,” said John Carroll, who helped lead the training.

Retired from the finance industry, Carroll is the co-founder of Tandem Care Associates, a senior care management company.

Carroll’s own personal experiences with dementia inspired him to make dementia a focus of the company.

“Once you start looking into this, how can you ignore it,” Carroll said.

As he has learned more about dementia, Carroll has found himself taking on more roles related to spreading awareness, including helping with Purple Table training, dementia-friendly training and serving on a committee at Emerson Hospital to implement dementia-friendly practices. From what he has seen, Billerica is on the forefront of addressing dementia, Carroll said.

“We’re getting there, we’re much better than we were, but we’re not where we want to be,” said Parcewski.