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7 Things You Should Do If You Just Got an Alzheimer's Diagnosis

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It’s not easy hearing a doctor say the words “Alzheimer’s disease.” Whether you or your loved one has gotten the diagnosis, you’re likely filled with a mixture of worry and confusion, and your doctor may or may not be able to give you guidelines for what your next steps should be. Alzheimer’s disease is a progressive brain disorder that affects memory and thinking skills, though the rate of progression and specific symptoms can vary from person to person. If the disease hasn’t progressed very far at the time of diagnosis, it may not be obvious what you and your loved ones should do to start making sense of the disease and preparing for the future. But now is the right time to start asking the tough questions and making plans.

Alzheimer’s is a diagnosis that affects the whole family, and you might feel calmer and more prepared for what’s to come by following the recommendations of people who have been where you are now. Below, you’ll find some insights from experts in dementia care and loved ones who have gone through their own loved ones’ diagnoses. Let us know in the comments what you would add to this list.

Here’s what to put on your checklist:

1. Start researching.

Most people have heard of Alzheimer’s disease and are familiar with the main symptoms. So you might assume you already know what will happen. However, there is so much to learn that you probably don’t already know, like symptoms besides memory loss, treatment options and practical matters like financial planning advice and care options. The more you know now, the less surprised and overwhelmed you’ll be by future challenges.

“It’s all about education and support. Immediately start reading up on dementia from nonfiction, education press-based books. I recommend books published by Johns Hopkins University Press,” said dementia care expert Rachael Wonderlin. “Be sure to get support as well, like looking into a support group. Find others on this journey.”

2. Remember: You are allowed to grieve the diagnosis.

After getting a tough diagnosis, you might feel pressured to “find the positives!” or “be grateful” it’s not “worse.” But it’s important to give yourself space to feel sad. Your and your loved ones’ lives will be different than you thought they would, and you have every right to mourn this unexpected change. It’s also not a sign of weakness to find a mental health professional or support group to help process your feelings.

Elaine Eshbaugh, an associate professor of gerontology and family studies at the University of Northern Iowa, said this is one of the pieces of advice she starts with when working with someone who has just gotten a diagnosis.

3. Get organized.

It’s never too early to start coming up with an organizational system and routine that will help you or your loved one keep track of medications, belongings, schedules and daily tasks. Short-term memory is typically affected before long-term memory, so you’ll likely start to notice difficulty remembering things like driving directions and where you store things first.

“You may find it easier to keep track if you have a regular way of doing things and a particular time to do them. Routines help to decrease confusion and frustration and increase feelings of security,” recommended Kristen Pagulayan, a licensed clinical social worker who provides education and support for those affected by dementia.

4. Recognize what you or your loved one can still do.

An Alzheimer’s diagnosis doesn’t mean you or your loved one no longer has any capabilities, opinions or feelings. Whatever they are still able to do, especially those things that bring them joy, they should be able to do for as long as possible. Don’t get ahead of yourself assuming they’re no longer capable.

“Recognize what they are still able to do, and help them do it. Continue talking to them, even if they cannot respond. They still feel, even if they cannot express it,” Robin Gail wrote in an essay on The Mighty about caring for her mom.

5. Set up a medical plan and start thinking about caregiving.

Do you know how often you or your loved one needs to have doctor’s appointments, or what treatments they should be on? Is there a spouse, partner, friend, adult child or professional caregiver in the picture who can help them manage their health, pick up prescriptions and keep them safe? You or your loved one may not need full time or even part time caregiving right now, but now is a good time to start thinking about it – rather than waiting for an emergency.

6. Get all legal and financial affairs in order.

As Alzheimer’s progresses, it becomes more imperative for a trusted loved one to be able to help manage bank accounts, health insurance, caregiving and medical decisions. Get that process started now, so you can be sure all wishes are respected.

“Meet with an elder care attorney and get all your legal and financial affairs in order. Make sure it is an attorney who specializes in elder care. Have them also start the process for the VA Aid & Attendance Benefit, a long, long process,” Dayna Steele advised on HuffPost.

7. Don’t forget: There is life after an Alzheimer’s diagnosis.

An Alzheimer’s diagnosis is tough, no doubt. You and your loved ones will certainly encounter challenges in the years ahead. But at the same time, try to remember that life isn’t over. People with Alzheimer’s still have the capacity to enjoy life, and it’s OK to keep having as many happy experiences together as possible.

“I naively expected [my friend with Alzheimer’s disease] would be sad all the time,” Cat P. said. “I don’t mean to diminish the practical challenges her memory loss causes her and her wife. I was just surprised by the fact that we can continue to develop a deeper relationship, and that she’s so fun to be around, even though she doesn’t remember my name.”

Remember: You aren’t alone as you face an Alzheimer’s diagnosis. There is support out there, whether that’s through a support group, counseling, family, friends, coworkers or online groups, and there’s no shame in turning to any of them as you’re making your way through the complex web of Alzheimer’s disease.

For more insight into coping with dementia, check out these Mighty stories:

Getty photo by jacoblund

Originally published: May 29, 2019
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