How to Talk to Your Adult Children About Early-Stage Alzheimer’s Disease

Telling your adult children that you have early-stage Alzheimer’s disease (AD) can feel like opening a door you may not be ready to walk through. While sharing your diagnosis is an important step, you may not get the response or support you’re hoping for — at least not at first.

Sharing your diagnosis doesn’t mean handing over your right to make decisions about your life. Open communication can actually support your independence by letting your family know that you’re aware of what’s happening and getting the appropriate treatment — and ensure that you have a voice in planning what your future will look like.

Preparing for the Talk

Before you talk with your adult children, talk with your healthcare team about your diagnosis, including what you understand and what you are still unsure about.

Ask what your specific diagnosis means and how your condition may progress, and find out what treatments and lifestyle changes are recommended.

“It’s a good idea to take your spouse or partner, or a trusted friend or family member, to help take notes and help you remember everything that was said,” says Christine Williams, a doctor of nursing science and professor emerita at Florida Atlantic University in Boca Raton, Florida.

Make Lists of What to Discuss Now and Later

Choose a Comfortable Place to Talk

Choose a setting that lowers the pressure for you. That can be at your home, in a quiet coffee shop, on a walk, in a park, or by phone or video call. If you pick a public place, make sure that you’ll be able to talk freely without being self-conscious and that there isn’t too much background noise.

What to Talk About

First, keep in mind that this is only one conversation, and there will be time for many other discussions. According to Williams, you don’t have to “eat the elephant” in one sitting; taking small bites will be the best approach for everyone involved.

It’s okay to keep things as simple and straightforward as possible. “You don’t need to deliver a perfect and complete medical briefing to your children,” she says.

Start With What You’re Concerned About

“Start with what you’re worried about,” says Williams. “Explain what’s been happening — what you were concerned about that led to your diagnosis.”

Williams says it might sound like this:

• “I’ve been having more trouble keeping track of appointments.”
• “I’m losing words more often.”
• “I know you may have noticed some changes, too, and I want you to know I’ve been evaluated.”
• “I’m still doing many things on my own, but I want you to understand what is happening.”

What to Cover in Early Talks

While there’s no must-do list for your initial talks, you may want to include the following:

• Your diagnosis, including what type of dementia you have
• What your doctor has said about current symptoms and next steps, including medication options and lifestyle recommendations
• What you are doing now to stay independent, including simple strategies like making lists and using a calendar
• What help or support you want right away
• What topics you would rather save for another conversation

Williams says that adult children may move quickly into problem-solving, especially if they are scared or have already noticed changes. If that feels premature, it is okay to say so.

“You’re allowed to say, ‘I appreciate your offer of help, but I think I’m okay for now,’” she says.

At the same time, cognitive changes can sometimes make it harder for a person to see when more help is needed. If several trusted people are raising the same concern, it’s worth listening, even if you do not agree right away, says Williams.

Issues to discuss with your children include:

• What help you may need with daily tasks in the future
• Where you would prefer to live in the future
• How you want financial, legal, and care decisions handled if you can no longer make them yourself
• Who you want to manage financial and legal matters, or your need to choose someone eventually
• The need to choose a substitute decision-maker for future care decisions, including living arrangements and medical care
• Other wishes that you want your family and care team to know about

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Legal and financial arrangements may involve a professional who isn’t a member of the family, such as an expert in elder law, a trusted financial adviser, or a social worker.

Managing the Emotional Fallout

But that does not mean they will react the way you hope or expect, at least at first — and that’s okay, says Williams.

“If you have more than one child, each one may have a different response. One child may feel relieved to have an explanation for your behavior, while another may insist nothing is wrong,” she says.

Denial may come as outright refusal to accept the situation, but it can also look like reassurance.

“You may hear, ‘You’re fine,’ ‘Everyone forgets things,’ or ‘Your memory is better than mine,’” says Williams. While that reaction may be normal, it can also be painful if you’ve worked hard to get evaluated and accept the diagnosis, she says.

If your child gets angry, it may be due to the fear, shame, embarrassment, or stigma that still surrounds dementia, but it doesn’t mean they don’t love you, says Williams.

“If your child is upset, you might say, ‘Whatever you’re feeling right now, I want you to know that I love you, and I’m telling you this because I was worried and wanted you to know,’” she says.

Grief is also a normal response, even in early-stage disease. “Your child may grieve the future they imagined with you — the role you would play in their lives or the lives of your grandchildren,” says Williams.

If the conversation becomes too much, you do not have to push through. Williams recommends giving yourself permission to stop before the discussion becomes overwhelming or unproductive.

“You can say, ‘That’s all I really need to talk about for today. Let’s go have lunch.’ Let them know you don’t want to discuss it anymore,” says Williams. The conversation can continue later once everyone has had more time to process the diagnosis, she says.

Next Steps and Following Up

One conversation will probably not be enough. A follow-up call, lunch, family meeting, or shared doctor visit can give everyone time to absorb the news and come back with better questions.

The next step may be practical: asking an adult child to go with you to a medical appointment, help organize papers, or sit down with you while you write out emergency information.

If the first conversation didn’t go well, keep trying. “Try to prioritize maintaining those relationships; We all need our loved ones, especially as we get older,” says Williams.

If the family is having trouble accepting the situation or moving the conversation forward, it can help to bring in someone neutral, says Heather Mulder, outreach senior manager for Banner Alzheimer’s Institute in Phoenix. “That might be a social worker, a geriatric care manager, a support group, a trusted friend, or even a family member who connects well with the person with dementia. These are emotionally charged conversations, and hearing what has worked for other families can give people strategies they may not come up with on their own,” she says.

The Takeaway

• Before talking with your adult children about an AD diagnosis, talk with your healthcare team so you’re sure you understand your diagnosis and current symptoms, and what your doctor can and cannot predict about next steps.
• Telling your adult children does not mean giving up independence, but it can help you explain what you’re concerned about, what support you want now, and what decisions can wait.
• Adult children may react in different ways: acceptance, denial, grief, anger, or a desire to fix everything.
• Follow-up conversations, shared medical visits, legal and financial planning, and outside support can help families keep moving forward in a loving way.