A new study shows that caregivers may be unintentionally robbing those with Alzheimer’s of their independence and self-worth.
According to a researcher at the University of Alberta, while caregivers — whether family members or professionals — may just want to help, they often take over tasks that the person with Alzheimer’s is more than capable of completing.
Psychologist Tiana Rust, who recently completed her doctoral program, said her research shows that caregivers adopt a “dependency support script,” assuming control of tasks they believed patients were no longer capable of doing for themselves.
But the model is based on the caregivers’ beliefs, rather than the person’s real abilities, she noted.
Rust observed several caregivers and Alzheimer’s patients in an experimental setting where they were asked to prepare a meal together.
What she found was similar to patterns found in other studies with older adults: Caregivers assume responsibility for tasks that they believed patients were incapable of doing on their own.
“The caregivers who believed that people with Alzheimer’s disease in general are more likely to be at risk for injury and are more accepting of help were more likely to be dependence supportive than independence supportive,” said Rust.
“This suggests that caregivers are basing their behaviors partially on their beliefs rather than basing their behaviors on the actual needs and the actual abilities of the people that they’re interacting with.”
In follow-up interviews, caregivers noted that they placed importance on treating people with Alzheimer’s disease with respect and promoting their independence. Yet, she noted that the caregivers’ actions did not always follow these goals or desires.
She recounted the story of a woman whose husband suffered from Alzheimer’s. The man attended a day program at a nursing home, where he would take on a number of tasks that his wife had assumed for him at home.
Rust said the woman was surprised that he was still able to perform these tasks as he had not done them in months at home. It’s an example, she says, of gauging the person’s abilities rather than making an assumption about the person’s ability based on societal beliefs related to the disease.
“People with Alzheimer’s disease have varying abilities, so it’s important to base [caregiver] interactions on the actual abilities of the person,” she said. “Observing the person and gauging what they’re capable of before jumping in and supporting the dependence of the person is definitely important.”
Rust added that training for caregivers to provide them with better understanding and proper tools could alleviate the potential for unnecessary intervention. Teaching them to observe and assess the person’s actual needs through interaction and observation, rather than what they believe the person needs, is vital in maximizing the person’s independence for as long as possible, she said.
One way is to assist the person by breaking up tasks such as preparing a meal into smaller, more manageable tasks that they can accomplish using verbal cues, she said.
“The task we had given the caregivers and the residents to do was set the table, make grilled cheese sandwiches, mix juice and clean up afterwards. All of those tasks are quite big in themselves, but they can all be broken up into small activities,” said Rust.
“These are all small tasks that these people with Alzheimer’s disease were still capable of doing even though they might not have been able to do the full task.”
Source: University of Alberta