Alzheimer's disease and other forms of dementia represent an exponentially growing social and health care challenge for American families - not only family members who face the progressive brain disease, but also those who love them.
Many spouses of those with dementia do more than watch as their partners deal with the disease's effects on brain functioning, memory, motor skills and emotional health. They often assume round-the-clock caregiving responsibilities as their husband or wife of many years faces progressive decline. Communication can become a particularly difficult issue.
"We found that breakdowns in communication may trigger or deepen problem behaviors in family members with dementia," says Marie Savundranayagam, assistant professor of social work at the University of Wisconsin-Milwaukee (UWM). "These problem behaviors by those with dementia, such as agitation and aggression, have consistently been linked with caregiver stress."
Through a UWM Research Growth Initiative grant and an Alzheimer's Association New Investigator Research Grant, Savundranayagam is working to identify communication strategies used by caregivers to resolve communication breakdowns.
Partners in long-lasting relationships are the focus of her research. "There's something very special about these relationships," she says. "These caregivers are less likely to place their spouses in a nursing home. They want to keep that family member at home as long as possible."
New strategies can backfire
"Communication breakdowns can also result from caregivers' use of ineffective communication strategies that they perceive to be helpful," says Savundranayagam.
"Imagine the frustration that a wife, married to her husband for 40 years and now thrust into the role of caregiver, feels when their familiar conversational give-and-take no longer works," she continues. "When the wife tries to communicate differently, that strategy may work - or it may create even more problems.
"For example, the wife may think that she can communicate better with her loved one by talking slower. But that's actually the opposite of what should be done. A person with dementia will actually forget what was said in the first part of the sentence before the caregiver finishes talking."
Insights from everyday interactions
Savundranayagam and co-investigator J.B. Orange, associate professor and director of the School of Communication Sciences & Disorders at the University of Western Ontario, are now analyzing everyday activities and communication patterns of persons affected by Alzheimer's disease and other dementias.
Caregiver/care receiver couples completed questionnaires and were then video-recorded as they interacted in their homes − at the dinner table, for example. Communication Sciences and Disorders students from UWM's College of Health Sciences, coached by Orange, are transcribing and coding these videos to help pinpoint the types of communication strategies the caregiver is using to resolve misunderstandings.
The next step, says Savundranayagam, is assessing the effectiveness of caregiver strategies. "Do their approaches exacerbate a communication problem or resolve it?" Savundranayagam's work also will investigate the role of effective and ineffective communication strategies in predicting episodes of problem behaviors and caregiver stress.
The goal is to lay the foundation and justification for designing empirically derived communication interventions for family caregivers that target both problems.
"Sometimes a caregiver can deal with problem behaviors and it's not that distressing for them," says Savundranayagam. "But other times, the caregiver's appraisal is incorrect, and a strategy that they think is good really isn't. When we see that, we know that an intervention is necessary for a specific group of caregivers.
"That's really where this project is going − to target the people who will really benefit from a communication intervention," says Savundranayagam.