How to disclose — or react to — a dementia diagnosis
Laurie Waters and Dawn Helms became fast friends 16 years ago when Laurie moved from Bridgewater, Massachusetts, to the Clover, South Carolina, neighborhood Dawn called home. They bonded instantly, in particular over a love of football, and soon became inseparable.
“Laurie helped bring up my boys,” says Dawn, 53. “She’s just the best neighbor you could ever have.”
“I can’t say enough about Dawn,” adds Laurie, 56. “I’ll do anything to help her out, and she’ll do anything to help me out. I love her to death. She’s my sister from another mister.”
About five years ago, Laurie began experiencing a variety of memory issues. However, it was an unrelated health scare in 2017 that led to testing that confirmed her younger-onset Alzheimer’s diagnosis.
Laurie received compassion and support from her husband, Ricky, as well as her two daughters. Given their close relationship, Laurie knew she’d confide in Dawn. When she did, Dawn was emotionally devastated but reacted with unconditional acceptance.
An Alzheimer's diagnosis is life changing. Acknowledging your feelings can be an empowering first step in coping with the challenges ahead.
“It was difficult because of all the unknowns,” Dawn says. “I didn’t know what was going to happen next or how long Laurie was going to remember me.”
The decision to disclose a diagnosis of Alzheimer’s to family and friends is a personal one that can come with risks and worry. While it’s normal to experience fear or discomfort about sharing this information, doing so is an important step for a person living with the disease to cope with the oncoming challenges and start their life post-diagnosis.
Fear of stigma, misunderstanding
Stigma and misconceptions about Alzheimer’s can often make people hesitant to disclose they’re living with the disease. Denial is also a common response to news of any serious illness, since it can provide distance from overwhelming feelings. For instance, a member of Laurie’s family accused her of lying about her condition. People living with dementia also may encounter a dilemma whether to reveal their diagnosis at work, as issues of job security or discrimination may arise.
“Some relationships may be tested by sharing a diagnosis, while other relationships may be strengthened,” says Monica Moreno, Alzheimer’s Association senior director of Care and Support. “Family and friends may react with comments like, ‘But you seem fine’ or ‘You’re too young to have dementia.’ These reactions reflect the person’s need for more time or education before they can respond in helpful ways. Talking openly with those you trust is a powerful way to educate them about the disease and to engage their support.”
'Real friends will stay'
Moreno suggests giving family, friends and co-workers more time if their initial reaction is unsupportive.
“It can hurt to realize that some family and friends you thought would be there for you can’t meet your expectations,” Moreno says. “They may have discomfort about your diagnosis, as it stirs up fears about their own futures. People who can’t be a part of your support circle now may join later. If longtime friends shy away, remember your best and real friends will stay with you.”
Kindred spirits Laurie and Dawn have not let the sobering news impact their friendship.
“I’m a realist. I know what’s coming,” says Laurie, who serves on the Alzheimer’s Association National Early-Stage Advisory Group to help raise awareness of the disease. “But while I’m here, I’m going to enjoy myself. I’m living my best life.”
“You have to keep going,” Dawn says. “I hope to share a scrapbook with Laurie, or a video, so I can say, ‘That’s us.’”
Make a Difficult Conversation Easier
Moreno offers suggestions on how to disclose a diagnosis of a serious disease like Alzheimer’s, as well as how to react to the news.
Disclosing a diagnosis
- Carefully decide who you want to know about your diagnosis. This may immediately include select family members and friends. Later, you may want to widen your circle by sharing with an employer or colleagues.
- Let them know you’re still you. Even though you’re living with Alzheimer’s or another dementia, who you are and what has made you close to each other is unchanged.
- Be open and direct. Engage people in discussions about Alzheimer’s and the need for prevention and better treatment.
Reacting to a diagnosis
- Thank the person living with Alzheimer’s for having the courage to share their diagnosis with you.
- Stay in touch. It shows you care about the person and what they’re going through.
- Educate yourself. Learn as much about the disease as possible, and offer to help in any way you’re comfortable and capable.
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