Alzheimer’s disease makes up 60 to 80 percent of all dementia cases. This high proportion means communication between patients and patients, family, and caregivers is vital. Aimee Miller-Ott, associate professor of communication in the School of Communication, has been researching communication challenges of adult children whose parents have Alzheimer’s disease.
This disease can cause devastating impairment and often loss of cognitive and relational functioning for the person, as the Alzheimer’s Association reports, and create disorder and chaos for the family system. Although people are often familiar with Alzheimer’s, Ott and four of her graduate students—Emma Lipka, Tyler Eilts, Erin Link, and Haley Thompson—chose to research this topic because people are less aware of the communication challenges that are likely to occur. They presented their research at the National Communication Association’s annual conference late last fall.
“After conducting thorough research that featured interviews of 12 adult children, who were not the formal caregivers to their parents with the disease, we found that all those interviewed reported stepping into a parental role to help provide support to their ill parent,” Ott explained.
Data from interviews revealed four significant communication challenges that all relate to shifting roles: communicating with an unfamiliar parent, correcting/reprimanding a parent, communicating in a dual role, and managing information about the parent.
Results found that it was difficult for people with a younger parent inflicted with this disease to accept that their parent, whom the children imagined would always be there for them, did not know who they were anymore. “Their roles shifted, although they were not the official caregivers,” Ott said. “The child became the parent, and the parent became the child.”
A commonly expressed feeling was resentment because those interviewed felt they do not have a mother or father, and that their children do not have a grandma or grandpa.
One woman interviewed would not even allow her child around her mother/grandmother who had Alzheimer’s because most of the time she did not make sense and expressed feeling uncertain about how to communicate to someone who was not entirely present and sometimes said things that were not true.
Another concern stated was being uncertain about how to explain to a younger child what Alzheimer’s is. Some children identified that their grandparent acted differently (more affectionate or aggressive) or said things that were not true. Other children would be less capable of detecting and understanding this.
Some individuals felt anger because people would make fun of what it means to have Alzheimer’s disease and they felt it was only okay for people close to the person to joke around, otherwise it was disrespectful. For example, one person claimed that their father would act drunk in public, but was not actually drunk but ill.
It is clear from what was discovered in the study how the nature of a relationship would be affected and touching to hear the stories and feelings from real people who are close to someone with Alzheimer’s. People said they wished they could “grieve,” except they were not able to because they did not actually lose by death someone they cared about.
It is important for a person who holds less insight and knowledge about Alzheimer’s to recognize that it creates ambiguous loss and changes family roles. Ott’s team’s found that those interviewed seem to accept their family role for the most part but acknowledged that it is challenging to step into a role in the care for a parent who is no longer the parent they used to know.
Challenges that adult children face include finding new ways to interact with parents they no longer know and filling the parental role that requires corrections or reprimands for a parent’s behavior. The last significant challenge to adult children’s communication in their shifting role is becoming responsible for managing information others have about the parent’s illness.
In their paper, Dr. Ott and her graduate students state, “Overall, it is important to articulate ways that these findings may help children of parents with the disease and those interacting with the children.”
The next step for their research is the publication of the paper, which would be an important contribution in helping to resolve these common and vital communication issues associated with the devastating impairment of Alzheimer’s that affects parents with the disease and their children and grandchildren.
Any story ideas, suggestions, or general feedback? Please contact Pete Smudde at psmudde@IllinoisState.edu