Work lends ‘voice’ to dementia patient wishes

Paul Mayne // Western NewsFaculty of Information & Media Studies professor Grant Campbell combines his background in library and information science to understand how to create state-of-the-art information systems to predict and adapt to the needs of people with dementia.

Grant Campbell vividly remembers playing violin next to his mother’s hospital bed and how, for brief moments, song became the communication bridge between them.

“She would hear me play a familiar song,” he said. “Out of the fog of dementia, the lyrics would come back.”

When both Campbell’s parents were diagnosed with dementia, he thought, “Well, I must do research – it will make everything better. Unfortunately, it’s rarely that simple.”

The Faculty of Information & Media Studies professor’s research, which began with that personal quest 10 years ago, hopes to help dementia patients communicate their needs to their caregivers – from family members to professional support workers.

“I want to break through the isolation felt by individuals and families who are living with dementia,” he said.

Work such as Campbell’s will also be critical as federal and provincial governments shift funding and policy priorities to manage a growing population suffering from the disease. According to the Alzheimer Society of Canada, 1.4 million Canadians will be living with dementia by 2031.

Campbell focuses on how people manage when they can no longer find the right words.

“Society is increasingly dependent on technology,” he said. “If I need to live independently and keep a semblance of normal life, I need an interface that will continue to work, even after dementia takes hold.”

He combines his background in library and information science – describing, organizing and classifying information – to understand how to create state-of-the-art information systems, such as drop-down menus, that will be able to predict and adapt to the needs of people with dementia.

The software would be integrated into websites, smartphone apps and smart homes.

Even with a diminished ability to speak, these electronic interfaces would help patients call an ambulance, order groceries and contact caregivers. It would provide a level of freedom for patients and peace of mind for their family members.

Campbell will be interviewing professional caregivers, personal support workers, nurses, and therapists who work with dementia patients to help understand the specific design needs. He is also asking family members, in order to understand how they communicate meaningfully with loved ones.

And he will also speak with people in the early stages of dementia – seeking their stories about achievements and challenges in making themselves understood.

Campbell’s aim is to look for common communication patterns and themes, including speech and vocabulary.

He will describe, classify and organize these themes and use them to ‘train’ software programs to learn, predict and adapt to diminishing speech and vocabulary patterns of those with dementia. Based on a person’s language patterns, for example, the software could provide synonyms or help them construct sentences.

A recent study demonstrated that people with dementia group objects together in different ways during the progression of the disease. In early stages of the disease, some with dementia related carrots to other vegetables such as tomatoes and celery. Later on, they would relate carrots to rabbits and, eventually, to rockets because of their similar shapes.

Apart from forming the basis for designing predictive software, Campbell is using information from these interviews to augment existing manuals and guidebooks for caregivers.

“If we can enhance our understanding of why and how these breakdowns in communications are happening, we can help them better, cope with it better (as caregivers) and hang on to our compassion,” he said. “A lot of caregiving is made more stressful and difficult because caregivers cannot bridge where he or she is and where the patient is.”

As he continues to play violin – he is a volunteer for the Intergenerational Choir, a weekly music program run by The Alzheimer Society London and Middlesex, Sisters of St. Joseph and the Medway High School music program – Campbell still sees how people with dementia can communicate through the language of music.

Once, he recalled, a caregiver asked him to play for a bedridden patient in advanced stages of dementia. Initially, she was unresponsive, Campbell said.

Then he played Oh, What a Beautiful Morning from Oklahoma! with its lyric, “The cattle are standing like statues.”

And for this woman, locked in dementia for so long, a happy memory briefly returned, along with words to name the memory. She whispered to him: “Guernsey cows on my farm. We had Guernsey cows.”