16 Things People with Alzheimer’s Wish You Knew

Memory loss can be scary, but patience, trust, and encouragement can help your loved one continue living a meaningful life.

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Every stage of Alzheimer’s is unique

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You might assume anyone with Alzheimer’s is unable to keep up with a conversation, but that’s not the case. Those in the early stages have memory problems that make it easy to get lost or forget conversations, while personality changes or agitation might show up during the middle stages, says Mary Mittelman, DrPH, director of the Alzheimer’s Disease and Related Dementias Family Support Program and research professor in the department of psychiatry at NYU Langone. When the late stage hits, your loved one might have trouble getting dressed or eating. “Symptoms of Alzheimer's change over time,” Dr. Mittelman says. “If I say something about the early stage, it’s not relevant to the middle stage.”

Life is still pretty normal in the early stage

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“I lead a largely normal life, but there are specific areas where I rely on a planner or alarm clock or smartphone,” says Eric Thompson, advisor on the Early-Stage Advisory Group for the Alzheimer’s Association. After receiving his diagnosis about four years ago, he had to retire and make a few changes to his routine, like taking care of his checklist of daily chores first thing in the morning so he doesn’t forget, but he says people are shocked by how well he remembers conversations. Don't miss this breakthrough that could reverse Alzheimer's.

I might notice my symptoms more than you do

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During the early stages of Alzheimer's disease, the changes in memory might be so subtle that you wouldn’t notice unless you spent a fair amount of time around the person. But that doesn’t mean you should undermine the condition or assume things haven’t gotten harder. “Half a dozen people have said, ‘You don’t have Alzheimer’s,’ and they say, ‘You seem normal,’” Thompson says. “After they’ve been around me for a while, I’ll see them a week later and they say they told me that the last time we talked. There’s something wrong, something different.” These are 7 of the earliest signs of Alzheimer's disease.

I don’t forget things on purpose

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You might be aggravated that you have to keep repeating yourself to someone, but don’t let your impatience get the best of you. Instead, just simplify the way you say things so your words are more likely to stick, Dr. Mittelman says. “If I say, ‘I told you before,’ which you could be tempted to do after 50 times, it just upsets the person because he doesn’t remember,” she says. “Just calmly tell him again without referring to the fact that you said it before. It makes it less likely an argument will occur.” Stop believing these myths about Alzheimer's disease.

Reminding me my loved ones are dead is devastating

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When your loved asks about a spouse who passed away, don’t cause unnecessary heartbreak by saying the person isn’t here. Instead, offer to take your loved one on a walk to look for that person, says Jackie Pinkowitz, MEd, board chair of Dementia Action Alliance. “You can’t expect that person to kind of come back into where you’re at, but you can be nice and kind of be where they are,” says Pinkowitz, who was a caregiver for her mom and her father-in-law, both of whom had dementia. “Share the moment, but be willing to kind of go into their world a little.”

Socializing is important to me

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Especially for someone in the early stages, who has just mild cognitive impairment, don’t force someone with Alzheimer’s to stay home when your loved one could be spending time with friends. “Unfortunately, some family members just disable them more rather than enabling them and encouraging them to be involved,” Pinkowitz says. Let a loved one continue being involved in the community or the arts. In fact, maintaining strong friendships is one habit that may help prevent dementia in the first place.

I can do more than you’d think

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You might be surprised that in the early stages, people are still able to drive cars. Thompson says that with the help of a GPS and an app that reminds him where he parked, he’s able to get around. But he’s found that his ability to drive makes some people are skeptical he has Alzheimer’s in the first place. “They say, ‘You communicate well and are driving,’” he says. “I can drive, but I need a GPS to drive anywhere.”

You can help me get involved

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As everyday tasks become harder, it’s common for people with Alzheimer’s or their families to assume that they can’t participate in activities that they used to. But depending on your loved one’s stage, he or she might still be able to do those things, just with alterations—though it might be up to you to extend the invitation. “Some people in early stages become apathetic and withdraw from people around them,” Dr. Mittelman says. “It’s less easy to initiate pleasant activities. It’s important to try and include people with dementia as much as possible.”

I want to make decisions

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“They feel like their rights to making decisions and everything, their dignity, their self-determination is taken away from them,” Pinkowitz says. Listen to what your loved one has to say instead of assuming a person with Alzheimer’s can’t make a solid decision. Start these habits to keep your brain young.

I want a meaningful life

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Alzheimer’s can shake up everyday life in a way that can make it hard to bounce back. But that doesn’t mean you should abandon loved ones and let them spend all their time alone at home. Thompson said early retirement was a struggle when he didn’t know what to do with his days. But getting involved with Alzheimer’s Association has given him the chance to go to museums, attend support meetings, give speeches, and go to conferences. “It gave me a new purpose, a new way to be involved and active and engaged,” he says. “I never thought my life would be enriched the way it has.” See if there’s a similar organization in your local area to keep your loved one active.

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