Life, scrambled by dementia

Virtual tour offers caregivers a glimpse of challenges

Devices mimicking dementia symptoms complicated a simple task for Lynn Reim, a staffer at Brightview Danvers. Devices mimicking dementia symptoms complicated a simple task for Lynn Reim, a staffer at Brightview Danvers.
(Dina Rudick/Globe Staff)
By Wendy Killeen
Globe Correspondent / July 28, 2011

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Leigh Duda was desperately looking for the white sweater. She had other things to do: write a note to her family, set the table, fold towels, get some water to drink.

But she was obsessed with finding that sweater. Bumbling and talking to herself, she looked in the drawers, under a pile of towels, beneath the bed, even in the television console.

As she moved on to the other tasks, she became upset because she couldn’t remember them all.

“I am losing my mind,’’ she said.

The Gloucester resident is the business office manager at Brightview Danvers, an independent- and assisted-living facility. But on this afternoon, she is a person living with dementia.

It is part of the Virtual Dementia Tour, a program offered by Danvers-based Hospice of the North Shore & Greater Boston to staff at facilities that serve people with dementia and Alzheimer’s disease.

By the end of next month, 200 workers at close to 20 area facilities will have taken the tour this year. And the work continues.

The idea is to simulate the physical and mental challenges facing Alzheimer’s or dementia patients so that people who interact with them can understand what their world is like, and be more sensitive to their needs.

“It makes me feel bad that people go through this every day,’’ Duda said. “I only did it 10 minutes. Can you imagine doing it 24-7?’’

The Virtual Dementia Tour was developed by Second Wind Dreams, based on clinical studies. Mary Crowe, a medical social worker, leads the training for Hospice of the North Shore, where she is education coordinator and liaison.

“Hospice has a passion for helping dementia patients because so many people we are now working with have dementia,’’ she said of her not-for-profit agency. More people in long-term care and assisted living also suffer from dementia, she said, and the numbers are growing dramatically, in part because people are living longer and because of the aging of the baby boomer generation.

Experiencing the virtual tour is beneficial for everyone who works in facilities for the elderly, Crowe said, “from the executive director to people in Alzheimer’s units to people in the kitchen and housekeeping, because everybody interacts with residents.

“It’s imperative we sensitize every individual to the needs of elders and the dementia residents so we can enhance their quality of life.’’

Trish Crean, resident services director at the Brightview facility in Danvers, said the training could also be beneficial to family members of dementia patients.

Participants in the virtual tour first take a seven-question survey exploring their attitudes toward people with dementia. After they complete the program, they answer the same questions again.

For the tour, they are outfitted with items that simulate effects of aging and dementia: shoe inserts with plastic points mimic bunions and peripheral neuropathy; gloves with nubs and fingers taped together cause loss of fine motor skills; goggles with a yellow haze and black dots restrict their vision; and headphones transmit static noise and sudden loud noises like sirens that can cause distraction and confusion.

Each person is led into a residential room at the facility and given eight minutes to perform five tasks, from folding towels to matching pairs of socks, to finding a pair of pants and putting a belt through the loops.

The lighting in the room is dim, except in the bathroom, which is very bright. There also is a strobe light in the room. On the bathroom mirror is a picture of an elderly woman; Crowe explained that people with dementia “don’t recognize themselves in the mirror. They see a stranger when they are looking at their own reflection.’’ There are lists of the tasks on the wall, but the words are jumbled.

There is an observer in the room, but the participants are not allowed to ask any questions. “People with dementia ask repeated questions and we often don’t answer them,’’ Crowe said.

As one person is attempting to complete the tasks, another comes in to do a different set of five tasks because, Crowe said, residents must deal with other people.

After her session, Duda was in tears. “My grandfather has Alzheimer’s,’’ she said. “You don’t understand it until you do this.’’

Lynn Reim of Beverly, program director at Brightview, said, “It was frustrating because it was ‘I know how to do this; why can’t I? I should be able to take two blue socks and put them together.’ ’’

Most said the vision impairment and noise were the hardest to deal with.

“There is chaos and a loss of so many senses,’’ said Lisa Ford of North Andover, health services director at Brightview. “The loud noises are anxiety-producing. I can see why people would have behavioral challenges hearing that all day, every day.’’

Rob Hamilton of Tewksbury, maintenance director at the facility, added, “I got all hot because I was getting nervous.’’

The participants’ answers after the tour showed dramatic changes in their attitudes. For example, when asked “What is your current state of relaxation?’’ before the tour, three said “relaxed’’ and two were “neutral.’’ Afterward, all five answered “anxious.’’

Asked “How easy would you say it is for a person with dementia to get through the day?’’ all five initially said “difficult.’’ Afterward, one said “difficult’’ and four said “unbearable.’’

Crowe later asked, “How will this experience impact your work with the residents?’’

“A calmer, quieter, slower approach,’’ said Ford. “I’d be more patient and aware of sensory issues.’’

In response to what she would do differently, Duda said, “Everything.’’

A silent epidemic
■Someone develops Alzheimer’s disease in the United States every 69 seconds. Among people age 85 and older, 50 percent have the disease.
■There are about 36 million Americans older than 65. In 2030, that number is expected to reach approximately 71 million.
■ By 2050, the number of American with Alzheimer’s is estimated to reach 16 million, largely due to the aging baby boom generation, an estimated 75 million people in the United States born from 1946 to 1964 and who this year will be between the ages of 46 and 64.
■ In Massachusetts last year, there were about 120,000 people 65 and older with Alzheimer’s; the figure is projected to increase to about 140,000 by 2025.
SOURCES: American Alzheimer’s Assoc.; Hospice of North Shore & Greater Boston