As World Alzheimer’s Month approaches, supporting personhood for family members with dementia is key

One of the great challenges faced by families coping with Alzheimer’s disease and other forms of dementia is learning how to communicate effectively with the person impacted by the disease while also upholding their personhood, or sense of personal value.

A new study from UConn researcher Amanda Cooper—published in time for World Alzheimer’s Month in September and World Alzheimer’s Day on Sept. 21—offers concrete recommendations on what to do and what not to do to support personhood for a family member living with dementia.

“These recommendations can help families maintain meaningful connections with a parent or grandparent living with dementia and support a positive sense of self and quality of life for people living with dementia,” says Cooper, an assistant professor of interpersonal communication at UConn.

First, she says, remind the person of who they are and who they were earlier in their life by reminiscing with them, telling them stories of their past, and pointing out their positive traits.

“Pay attention to how they respond and adjust your approach as needed,” she advises. “This could mean rephrasing a question, prompting them to help them remember, asking follow-up questions, or giving them a break from the conversation if needed.”

Second, cultivate relational connection by saying “I love you,” giving a hug or a kiss, making the person laugh, expressing gratitude for their role in your life, or reminiscing about moments you shared in the past, she adds.

Third, do not do something for them that they can do for themselves. Avoid speaking for them and help them find the right words only if they ask, Cooper says. At the same time, do not ask them to do something they are no longer able to do. If they cannot remember moments from the past, do not test their memory by continually asking them to remember.

“Supporting personhood requires adjusting your communication to the person’s current capabilities,” she says.

Cooper’s research focuses on the ways in which individuals and families navigate difficult transitions across the lifespan, particularly at the end of life. This latest study, “Finding the Communication Sweet Spot: Strategies Promoting Personhood in Conversations Between Individuals with Dementia and Their Family Members,” was published in the Journal of Family Communication in July.

She and her team used data from StoryCorps, a nonprofit that shares stories and conversations of everyday people to analyze conversations between people with dementia and their family members to isolate successful strategies employed to promote personhood in family members with dementia.