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Understanding dementia from the inside out

During the Virtual Dementia Tour, Diana Kwarteng struggles to complete everyday tasks.Emma Goddard for the Boston Globe

Trying to perform a simple task with multiple noises in your ears, blurred vision, painful spikes in your shoes, and blinding strobe lights would be a similar experience to having dementia.

It’s hard to imagine, which is why HouseWorks, a Newton-based provider of home and hospital care for seniors, is using virtual reality to give those who care for dementia patients a better sense of what it’s like to have the disease.

The simulation mimics common challenges dementia patients face and aims to raise awareness about the 50 million people worldwide who have it. Andrea Cohen, HouseWorks founder and CEO, said she intends for the eight-minute simulation to become a training requirement for the agency’s caregivers in the Greater Boston area in the near future.


“We’re giving them tools in their toolbox, so if one thing doesn’t work they can pull out something else that they learned through this training,” Cohen said. “Rather than getting frustrated with the client, they realize what the client is struggling with and they are just more patient.”

Seven caregivers met at the HouseWorks headquarters on Oct. 16 to test-drive the technology. First the trainees put on all the pieces for the full-body experience, then they received instructions to enter a room and complete tasks such as folding a shirt and putting pills back in a container.

The virtual reality ensemble includes glasses with tape over certain areas to mimic how dementia patients might suffer from a loss of peripheral vision and the ability to focus. Shoe inserts with sharp bumps cause minor foot pain similar to what many dementia patients feel from nerve damage. Thick gloves make it difficult to pick up items and control movements resembling damaged depth perception. Trainees also wear headphones with chaotic sounds and voices, which is similar to a dementia patient’s heightened attention to background noise.


Vinette Tyme, a home health aide who has worked as a caregiver for over a decade and currently assists HouseWorks’ case management team, described the experience as “the most difficult thing” and said her “mind was all mixed up.”

“I took things for granted; picking things up, putting things down,” Tyme said. “It makes me feel that no matter how well I can do it, they are struggling.”

After completing the training, Tyme said she thinks she will better handle visiting her aunt, who is suffering from dementia in New Jersey. She said it will also help her better communicate with her peers and help teach them about taking care of others with the disease.

While Tyme is a certified nursing assistant, she said being “first and foremost a caring person” is the most important part of the job.

Another caregiver who took the training, Diana Kwarteng, a CNA who also has worked for a decade as a caregiver for patients with dementia and Parkinson’s disease, said she, too, struggled completing the tasks.

While in the training room, she said, she often stared at the table of objects in front of her, motionless and seemingly forgetful of the task at hand.

“How come I can’t pick up medication when I know it’s there and the box is there?” she said.

Caring for somebody with dementia is challenging, Kwarteng said, but she said she has more experience now that she’s virtually stepped into the shoes and seen through the eyes of a dementia patient.


Second Wind Dreams, a nonprofit based in Georgia, provided the training and equipment for the Virtual Dementia Tour. While the tour has trained thousands of facilities across the country, HouseWorks sees the potential in making it a requirement for the agency’s 400 caregivers in Greater Boston, Cohen said.

“We started out training our administrative staff with the virtual dementia tour, and we realized immediately that it’s something we want our 400 caregivers to take part of.”

Cohen created HouseWorks 25 years ago after she faced challenges taking care of both her parents. At the time, resources for caregivers were scarce, she said.

“You were just hoping that the home health aide would show up and be compassionate,” she said. “The world has really changed now because care in the home is what people wanted, and now it’s a reality.”

After the training session, some of the caregivers said they better understood why their patients get so frustrated and described how they were eager to be more calm and forgiving rather than getting irritated, too.

“We really believe that a better understanding leads to better care,” Cohen said.

Emma Goddard can be reached at newtonreport@globe.com.