Long-time readers know that we strive to offer the latest research on brain health, as well as lifestyle tweaks proven to cut the risk of Alzheimer’s disease.
However, in this article I’d like to delve into a troubling facet of this misunderstood disease. Here’s a common scenario: A person is diagnosed with dementia, they share the news with friends, and just like that those ‘friends’ soon disappear.
According to a survey by Alzheimer’s Disease International, many people diagnosed with dementia report feeling isolated and left out.1 In fact, nearly four out of ten of those living with dementia in high-income countries report feeling ignored and ostracized in their social lives.
Here’s the important research, including easy tips on how to be a better friend…
When Friends Stop Calling
Wall Street Journal reporter Clare Ansberry explored this profound topic in an article entitled “After an Alzheimer’s Diagnosis, Friends Stop Calling.”2
One particularly articulate respondent in the survey said, “I call it the friendship divorce. I have lost a fair amount of people in my life that I at one time considered friends.” Another respondent wrote, “People tend to run when they learn you have dementia.”
Ms. Ansberry suggests that these reactions are due to a general lack of understanding of the stages and types of dementia.
She explains how those in early and mid-stages, which can last for years, may continue to work, volunteer and travel.
“It’s part of who they are, but doesn’t have to define them,” says Monica Moreno, of the Alzheimer’s Association, in Ms. Ansberry’s article.
Why Friends Leave
After interviewing several people for this article, the writer found common themes.
Geri Taylor, a 76-year-old interviewee, was diagnosed with mild cognitive impairment in 2012, and later Alzheimer’s. She said people often think that everyone with dementia is old, feeble and acts strangely.
“Those who define themselves by doing things the right way and being courteous and neat are afraid that people with Alzheimer’s might show badly,” said Ms. Taylor, who worked 45 years in the long-term care industry.
Greg O’ Brien, another interviewee, was diagnosed with early Alzheimer’s nine years ago. He admits he’s lost friends, “who slip away because they don’t know what to say.” Mr. O’Brien adds that the friendship divorce can go both ways.
“I don’t spend time with people who don’t seem to understand the journey. I don’t judge them or hate them. I just stay away from them,” says Mr. O’Brien, author of the 2014 book “On Pluto: Inside the Mind of Alzheimer’s.”3
The Value of Friendship Despite Challenges
Janelle Taylor, PhD, and professor of medical anthropology at the University of Washington, studied this topic in a fascinating research project, entitled Engaging with Dementia: Moral Experiments in Art and Friendship.4
Dr. Taylor based her research on interviews with individuals who self-identify as friends of someone with dementia (as well as some health care providers and family members).
She discussed her conclusions in a Scientific American article.5
Dr. Taylor explained that people can find value, interest, meaning and pleasure in friendships with people who are living with dementia. Her research shows it.
“The friend who remains in a relationship with a friend who has dementia may gain knowledge about the illness and grow in unexpected ways,” she writes.
Dr. Taylor offers some important takeaways from her research:
“First and foremost, friendships matter to older adults with dementia for all the same reasons that friendships matter to anyone: They are sources of pleasure, support and social identity.”
She also notes that the difficulties faced by informal, unpaid caregivers of those with dementia might be less overwhelming with the help of friends.
“There is a lot we can do to make life better for older adults with dementia,” she concludes. “And we ought to do what we can – not only because people with dementia are fellow members of our human community, but also because any one of us might find ourselves affected in the future.”
How to be a Good Friend to Someone Living With Dementia
Based on information featured in “After an Alzheimer’s Diagnosis, Friends Stop Calling”6. . .
Educate yourself. There are many stages and kinds of dementia, including Alzheimer’s.
Don’t disappear. Call and invite your friend to do activities you both enjoy.
Offer help: Ask what they are comfortable doing and what they need help with. It could be something as simple as a ride to a doctor’s appointment, grocery shopping or cooking a meal.
Talk directly to your friend: Make eye contact. Let them know it’s great to see them.
Always be patient: If someone asks the same question over and over, don’t point that out. Just answer. Give them plenty of time and space for responses.
Offer reminders: If your friend looks confused, give your name and connection. “Our kids played baseball together.”
Don’t ask a series of questions, which can be confusing. Avoid questions — like “What did you do today?” — which require short-term memory and can be frustrating for someone with dementia. Better to ask questions that someone in any stage can answer and that show you care, like, “How do you feel today?”
Avoid loud, crowded places. They can be overwhelming.
Touch is important. Hug. Offer a gentle touch on the arm or hand or shoulder. People with dementia sometimes feel others are afraid of them.
- Cult Med Psychiatry (2017) 41:284-303