Mom was always scatterbrained, but she’s been acting different lately. She isn’t just leaving her car keys in the fridge or searching the house for the eyeglasses that were on her head the whole time. Her lapses are moving into less cute territory, like needing help remembering her grandchildren. You suspect she’s exhibiting early signs of dementia. Alzheimer’s, maybe.
You don’t think this lightly. And, like most people, you have no idea how to talk about it. University of Pennsylvania Perelman School of Medicine Professor and Penn Memory Center co-director Jason Karlawish says that because there’s “high-octane stigma” surrounding Alzheimer’s disease, it’s difficult for families to address dementia when they suspect it.
“Once there’s stigma surrounding the disease, it limits people’s desire to find out if there’s a problem and if they might have it or even just talk about it,” Karlawish, one of the world’s foremost authorities on dementia, said. Proof: In a recent Alzheimer’s Association survey, nearly three quarters of Americans said it would be challenging to discuss this issue with a loved one.
While you don’t want to talk about possible dementia symptoms, most people’s parents would want to know if you’ve noticed them. The Alzheimer’s Association survey mentioned above found that about nine in 10 Americans would want someone to tell them if they displayed signs of cognitive decline. Moreover, as Ruth Drew, director of information and support services at the Alzheimer’s Association noted, the earlier you address dementia, the better the possible outcomes will be.
“It’s understandable that many families are reluctant to express their concerns and initiate a conversation, but there are good reasons to do so,” Drew said. “Early detection and diagnosis puts individuals and families in the best position to navigate a devastating disease. Avoiding the conversation and letting problems progress is the worst thing you can do.”
The conversation is never going to be easy, but these tips from Alzheimer’s and Dementia experts can make it less daunting.
Lead With Dignity and Respect
Dementia isn’t like other diseases. Its impact can be as dramatic and devastating as cancer but because it involves cognitive decline, it takes away something people have long taken for granted: the ability to make choices and have control. “What makes the disease really unique from all other diseases… is it requires someone else to help you self-determine your own life,” Karlawish said.
When adult children face parents with possible dementia symptoms, Karlawish said they need to recognize the fundamental ethical matter at stake. “You’re in a negotiation with someone else about how they’re going to exercise their self determination, their identity and their privacy,” Karlawish said. “And I think most of us, when you frame it that way, would say we better be pretty, pretty dignified about it and pretty respectful about it.”
Be Ready to Retreat and Regroup
Despite your best efforts and intentions, when you sit down with your parents to talk about what you’ve been noticing, they might not not want to talk about it the first time you try to bring it up. They may respond with denial or even hostility. In those cases, stay calm and remember that you get more than one shot at this conversation. “They may get angry, upset, defensive, or simply refuse to talk about it,” Drew said. “Unless it’s a crisis situation, don’t force the conversation. Take a step back, regroup on the approach and revisit the subject in a week or two.”
Talk About it Early
The fear of confronting the problem can be paralyzing, but avoiding it only makes it worse. With early detection and diagnosis of dementia, the condition is far more manageable. Knowing what’s causing dementia can be of critical importance, for example. While Alzheimer’s Disease is the most common cause of dementia, it’s not the only one. Alzheimer’s is irreversible, but other dementia-causing conditions, like infections, immune disorders, and nutritional deficiencies can be reversed with treatment. If they’re diagnosed with Alzheimer’s, early diagnosis allows individuals to enroll in clinical trials that advance research and could provide medical benefits. Early diagnosis gives your parent a chance to plan for the future while they can clearly make legal, financial and end-of-life decisions.
Talk About it Often
The first time you talk with mom or dad about dementia almost certainly won’t be the last. Even under the best of circumstances, cognitive decline is a daunting life change. There’s a lot to discuss. It would be possible to fit in a single talk. “Be open to the fact that you don’t have to probably get this all done in one conversation,” Karlawish said. “Like many dramas, it needs to unfold over a series of acts, rather than in just one scene.”
Since dementia erodes perception, your parent might not realize that they need help. But Karlawish said that even if elderly people deny big, scary problems, they can be open to admitting to smaller concerns, like if their memory isn’t what it used to be. “Most people will say, yeah, you know, I’m having trouble remembering,” he said. “I don’t feel as sharp as I used to. Things take longer and they’re more frustrating. I think that alone can be enough to say, ‘Maybe we’ve got to get this checked out.’”
Be in The Room When They Talk to a Doctor
When you’re trying to convince your parent to see a doctor about dementia, a specialist can be a tough sell for a skeptical parent. Karlawish noted that even his organization’s name alone — The Penn Memory Center — can set off alarm bells. Your mom or dad is more likely to find talking to their regular doctor about possible symptoms less daunting. But, per Karlawish, they shouldn’t talk to the doctor by themselves. You need to be present to ask questions and hear the doctor. “The next most ineffective visit short of no visit is they go in on their own,” Karlawish said.
Remember The Person You’re Talking to
There’s no one-size-fits-all approach to talking with an elderly person about dementia. People are different and it’s impossible to predict how different people will respond differently to a given approach or strategy. Luckily, you probably know your parents pretty well. Use that knowledge to your advantage. “Tailor the conversation in a way that is most likely to connect with the individual,” Drew said. “It could be a one-on-one conversation or it could involve other close family members. Think about who is best suited to initiate the conversation. If there’s a family member, close friend or trusted advisor holds sway with the person, be sure to include them in the conversation.”
Ask The Experts (Including Your Parent)
Suspecting your parent is showing symptoms of dementia can feel like having the rug ripped out from underneath you. You’re facing something unknown that could profoundly impact your life. But while it’s new to you, you’re not the first person to face this situation. A network of experienced caregivers can help walk you through it. The Alzheimer’s Association has a wealth of resources on their site and offers live help through their free helpline 800-272-3900.
And there’s an expert closer to home you can consult to help guide you through talking with parents about dementia: the parent themselves, says Drew. “One conversation starter that has worked for some families is to say, ‘Mom, if I ever saw changes in your memory or signs of cognitive decline, how would you want me to handle it? Would you want me to say something to you? Would you want me to talk to your doctor?’”