What is next for your friendship?
"Stand by your friend,” says Arthena Caston, 56, of Macon, Georgia, who was diagnosed with early onset Alzheimer's disease five years ago. “And when I say stand, stand by your friend through thick and thin. Because it's not always going to be a great day."
Caston, a member of the Georgia board of the national Alzheimer's Association and a former member of the association's Early-Stage Advisory Group, is married with two grown daughters. She retired from her job in customer support shortly after her diagnosis. She now walks her two dogs, makes cards and scrapbooks, and educates people about dementia. Caston depends on her husband, Virous, her daughters and her two best friends for support.
“My true friends, they stand in front of me to lead me when I have a problem. They stand beside me when I need them to walk with me. And, they stand behind me where I need them to push me to get up,” she says.
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Still valued and appreciated
A dementia diagnosis can unsettle a friendship. But research shows that socialization and connection are vital for patients. A 2012 report by researchers at Queens College in Kingston, Ontario, published in the Journal of Aging Research, found it was “extremely important” that people surrounding Alzheimer's patients reassure them that “regardless of their cognitive abilities, they have a place in society and their identity is valued.”
But people lose friends when they get a diagnosis because of misconceptions, stigma or even fears for themselves, says Monica Moreno, senior director of care and support for the Alzheimer's Association.
"It's not uncommon, unfortunately, to hear stories where individuals have been diagnosed and their families lose friends,” Moreno says. “One of our advisers says it best when he says, ‘It's not a casserole disease.’ People don't come flocking to your house bringing you food and checking in and asking to see how you're doing."
If you have a friend with dementia, here's advice from Caston, Moreno and others on how you can continue to enjoy and honor your friendship:
Take time to adjust. When Caston told good friend Shaun McDaniel-Graham about her diagnosis, it took some time for the new reality to sink in. Since then, Caston says, McDaniel-Graham calls her daily, even if it's just a brief chat. If a dementia diagnosis flummoxes you, be honest with your friend, Moreno says.
"At the end of the day, it's better to have that conversation and share what you're feeling,” rather than just walking away from the friendship, Moreno says.
Learn more about dementia. Dementia can take different forms and paths. “Get educated, learn about the disease,” Moreno says. “The way someone communicates will not look the same way as the disease progresses, but there are still ways you can stay connected to that individual.”
The Alzheimer's Association, for example, has resources such as LiveWell, which offers tips on healthy lifestyles for patients and those who love them; a Community Resource Finder (created in cooperation with AARP) with local listings, and a 24-hour helpline staffed by experts who answer questions from patients, family and friends.
Let your friend set the tone. Your friend may be embarrassed, frightened, angry or even clinically depressed, says Pam Brandon, president and founder of AGE-u-cate, a Dallas-area firm that develops dementia training programs for professional and family caregivers.
"Understanding and being empathetic to where they are emotionally is one of the most valuable things a friend can do,” she says. “If you're sad today, I want to be here to listen to you. If you're bright and cheerful, then let's have fun together.”
Ask your friend what helps. Is that a daily text or phone call? A short note? A weekly walk? “We need to have these conversations with the individual to really find out what works best for them,” Moreno says. “Don't go to their care partner [or] their spouse. Go directly to them if they can communicate what their needs and desires are."
Adjust how you communicate. British researcher Phil McEvoy refers to “empathetic curiosity,” which he defined as focusing on the perceptual experiences of another person, particularly those with dementia.
He suggests caregivers and friends use techniques such as asking short, open-ended questions in the present tense; paying attention to nonverbal cues; and giving the person with dementia time to respond so they feel some control of the conversation.
Or, as Brandon says, “There are a few things that can tell a person you're empathetic, that you care about them: Listening to what they say, providing eye contact if you're with them in person."
Even when masks hide our facial expressions, we can speak with a calming voice, touch lightly, and tell a friend that we understand, she says.
Consider possibilities, not limitations. "Look at the strengths the person maintains, not the losses,” says Moreno. She gave an example of a patient who loved to play baseball. Even when he could no longer play, he still enjoyed watching games.
Remember that despite dementia, the person is still your friend.
"You don't have to dwell on the disease,” Moreno says. People “do appreciate those little things that you can do to help them get through the day and the challenges of the disease they're living with."