Alzheimer’s disease puts a significant burden on not only the nearly seven million people who have been diagnosed with it, but also the caregivers supporting them.

More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias, according to data from the Alzheimer’s Association. And 70% of them say that caregiving is stressful.

Dr. Heather Sandison, a renowned expert in Alzheimer’s disease and related dementia care, said it’s critical for caregivers to protect their own mental and physical health.

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In her new book “Reversing Alzheimer’s: The New Tool Kit to Improve Cognition and Protect Brain Health,” published by HarperCollins on June 11, Sandison — who is based in California — outlines the specific risks that caregivers face.

In the excerpt that follows, Sandison offers some tips and techniques for how caregivers can release expectations and practice self-compassion.

Read an excerpt from Dr. Sandison’s new book

Dr. Heather Sandison: When I meet with a new dementia patient, I know that I am treating their caregiver in addition to treating them. 

Of course, not every caregiver is on board with the idea of prioritizing their own health at that moment — mostly, they want to do everything they can to help their loved one get better.

“Dementia is almost like a virus. It doesn’t affect just one person. It can reach out and impair the cognitive health of the people who care for the patient, too.”

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But dementia is almost like a virus. It doesn’t affect just one person. It can reach out and impair the cognitive health of the people who care for the patient, too. 

To be blunt, if you are not caring for yourself, you are not going to be a good caregiver.

Taking care of someone with Alzheimer’s is such a big and important job that it’s easy to lose yourself to it … If you don’t also care for yourself, your effectiveness and your health will suffer, which will only make things worse for the person you’re caring for.

Risks of caregiving

I’m guessing you already know that caring for someone with dementia is taxing. You may not realize just how detrimental to your own health it can be. I’m sharing this list so that you can see the potential costs of not tending to your own well-being during this time.

An expert in Alzheimer’s disease and related dementia care, Dr. Sandison believes that reversal isn’t just possible but that it’s already happening in multiple patients.  (Dr. Heather Sandison)

Caregiver burden

Whether you’re living with your care partner and providing day-to-day care, or living at a distance and providing mostly financial and/or logistical support, having someone in your life who has dementia is often hard in multiple ways — emotionally, physically and financially. 

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Many people find that their sleep, diet, physical exercise and fun suffer. It’s a burden that works in two directions: It’s common to give up the things that help you stay healthy, and to feel a big weight of responsibility, frustration and guilt. 

With Alzheimer’s, patients lose their independence, and there are no benchmarks that align with a predictable timeline. That unpredictability can make the experience stressful and uniquely challenging.

Impaired cognitive function

Research has found that dementia caregivers have significantly lower scores on tests of cognitive function. 

“With Alzheimer’s, patients lose their independence, and there are no benchmarks that align with a predictable timeline,” Sandison writes. “That unpredictability can make the experience stressful and uniquely challenging.” (iStock)

This may be linked to the fact that many caregivers report poor sleep, which can impair your ability to process and respond to information, and thus can influence how safely you are able to perform complex caregiving tasks.

Depression

Depression and dementia are closely linked — having depression can increase your risk of dementia, and having dementia can increase your risk of depression. 

“Taking care of someone with Alzheimer’s is such a big and important job that it’s easy to lose yourself to it.”

On top of that, caregivers of people with dementia experience depression more frequently than the general population, and depression in a caregiver can in turn affect the status and prognosis of the dementia patient.

Isolation

A common feeling among dementia caregivers is that people who aren’t also caring for someone with dementia can’t understand what it’s like, which understandably can lead to feeling isolated from others. 

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Also, your devotion to your loved one can make it hard to ask for help. On top of that, your caregiving duties may be preventing you from getting together with friends or doing things that get you in the company of others, such as working out at the gym, attending church or participating in some other social activity.

Dementia risk

Devastatingly, all these negative effects combine to create an increased risk of developing dementia yourself — up to a sixfold increase compared to non-caregivers. Which is not to say that caring for someone with dementia definitely means you are getting dementia, too. 

It’s really when the sense of caregiving burden is high — and you don’t exercise as much, sleep as well or make healthy food choices — that this risk is at its highest.           

Caregiver non-negotiable: At least one day off            

If there’s one thing I know for absolute certain about Alzheimer’s, it’s this: Taking care of someone with dementia is not a one-person job. 

Trying to do it all yourself without ever taking a break is impossible. It will only increase your caregiver burden and put you on the path to burnout, which can then take a toll on your own risk of developing dementia and render you less able to care for your loved one.

More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias, according to the Alzheimer’s Association. (iStock)

It’s for this reason that I tell every caregiver I encounter that there is only one nonnegotiable piece of any caregiving plan, and that is that you take at least one full day a week off from caregiving.

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Why? In addition to staving off your own burnout as well as giving you some time to care for yourself, putting in place a “my day Friday” (or any other day[s] of the week) will force you to line up some help. 

Even if you think you don’t need any assistance now, it is only a matter of time until that changes.

Tools and techniques

Whether you realize it or not, you already have ways of coping with the stress that caregiving can give rise to — it’s just that they are likely not that helpful in the long run. That may be skipping out on sleep, drinking alcohol, blaming others, blaming yourself or deciding that you just need to try harder. 

All these can ultimately only add to your caregiver burden, not lessen it.

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Here, I’m providing a laundry list of tools and techniques that can help make a positive difference in both your day-to-day reality and your long-term health.

Reframing

This is a shift in your thinking that helps you deal with the unexpected with more equanimity — such as when your loved one is not listening to you. It’s very easy to be judgmental in these moments, and to feel victimized, as in “Why are they making my life harder?” Especially when you’re caring for a family member, with whom you have a long history. 

Ultimately, making it about you and judging the other person leads to more disconnection, which can breed upset and an escalation of the challenge.

“Self-compassion has also been shown to reduce the perception of caregiver burden,” Sandison writes. “An important way you can implement self-compassion is to continually remind yourself that you’re doing your best.”  (iStock)

Whenever you’re in that place of judgment, there is an invitation in that moment to notice that you’ve gotten upset, and then reframe your loved one’s behavior as the communication of an unmet need.

Determining an unmet need requires some curiosity and some detective work. In any situation, take a step back and objectively ask, “What’s going on here?” 

“There is only one nonnegotiable piece of any caregiving plan, and that is that you take at least one full day a week off from caregiving.”

For example, if your care partner isn’t listening to you, instead of concluding that they are choosing not to hear you, stay open enough to investigate if their hearing aid is turned up, or needs a new battery, or if there’s too much background noise.

Releasing expectations                                       

This is probably one of the hardest things about loving and caring for someone with dementia — little by little, they lose the ability to do things they once could, whether that’s log into an online account, manage finances, remember your name or brush their teeth. 

As painful as these losses can be to witness, what makes them more upsetting is when you expect your loved one always to be able to do what they once could. 

That’s why, even though you hold out hope that they will be able to do some of these things again, it’s helpful to everyone — especially you — if you can let go of the expectation that they continue to be the person they were. By releasing the expectation, you can relieve yourself of at least a bit of the disappointment that comes from being let down when your expectation isn’t met. 

Take at least one day off per week from caregiving, an Alzheimer’s expert and author of a new book recommends. (iStock)

Maintaining a spirit of curiosity can help. 

Saying things to yourself such as, “I wonder how this will go,” can help you meet your care partner where they are that day. Don’t forget to enjoy and celebrate when your loved one does regain capacity.                                       

Self-compassion                                        

Self-compassion has also been shown to reduce the perception of caregiver burden. An important way you can implement self-compassion is to continually remind yourself that you’re doing your best. 

That may not mean you’re doing a perfect job, or even a great job — some days, you may need to phone it in because you didn’t sleep well the night before, or you’re not feeling well, or you have to focus on work that day, and that’s OK. 

But it does mean that you are doing the best you can in that moment. 

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The fact that you are willing to be a pioneer and learn about the things that can prevent or reverse the downward slide of dementia and put in the work to help your loved one get better suggests to me that not only are you doing your best, you’re doing a phenomenal job. It’s not easy to be at the forefront of a movement.        

“Try talking to yourself the same way you would talk to a friend — someone you care for, and whom you’re trying to encourage.”

Another important tool is to become aware of how you talk to yourself. We all have moments when we get frustrated, say the wrong thing or do something we later wish we could take back. I think we can agree that no one is perfect. 

So when things do go wrong, begin to notice what you say to yourself about it. It helps you become an observer of your own thoughts, which then creates a window of opportunity to be more intentional about what you tell yourself. 

For more Health articles, visit www.foxnews/health 

In these moments, try talking to yourself the same way you would talk to a friend — someone you care for, and whom you’re trying to encourage. 

If they made a mistake, I’m guessing you wouldn’t criticize them. 

You would just remind them that they’re doing their best. Resist the urge to say harsh, judgmental or downright mean things to yourself.

Excerpted with permission from the new book, “Reversing Alzheimer’s: The New Tool Kit to Improve Cognition and Protect Brain Health” (HarperCollins) by Dr. Heather Sandison, copyright © 2024 by Dr. Heather Sandison. All rights reserved. 

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Greater epilepsy awareness could be as simple as a walk on the beach, thanks to one New Jersey man.

Kyle Adamkiewicz, 33, has lived with epilepsy since being diagnosed at age 6. He is now combining his love of art with the power of nature to help bring his seizure disorder into the spotlight.

In Oct. 2022, Adamkiewicz began collecting seashells from the New Jersey shore, then painting and decorating them with heartfelt messages in search of a cure. He places his works of art along the seaside boardwalks in the hopes that they will inspire strangers to spread the word — and the shells.

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“It started with just painting a few shells, and I figured no one would find them,” Adamkiewicz said in an interview with Fox News Digital. 

“And then I saw people posting them online, and writing so many good and positive comments about the shells and about finding a cure for epilepsy. That motivated me to keep making more and more and more.”

“And now they have been around the entire world.”

Adamkiewicz doesn’t drive, so his parents — Chuck and Laurie Adamkiewicz — drive him to place his shells.

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“We have shells with us in the car all the time, and he places them in different locations, different towns,” his mother told Fox News Digital.

Adamkiewicz estimates that he’s painted some 1,100 shells so far.

Many include messages about finding a cure for epilepsy, but he has also created themed designs for various occasions, like Shark Week and Halloween.

Adamkiewicz has painted over 1,000 shells so far. “Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother. (Adamkiewicz family)

“Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother.

In addition to a hand-painted design, each shell contains Adamkiewicz’s initials, the year he decorated it and a QR code.

When people find the shells and scan the QR code, it takes them to a website. From there, they can access Adamkiewicz’s Facebook group, his Instagram account and a GoFundMe page set up to help raise funds for people to get “seizure alert” dogs.

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It also links to the Epilepsy Foundation website, where people can learn what to do if they witness someone having a seizure.

“Most people don’t really know how to handle someone if they’re having a seizure,” Adamkiewicz told Fox News Digital. “They just turn their back and walk the opposite way.”

In addition to a hand-painted design, each shell contains Adamkiewiczs’s initials, the year he decorated it and a QR code. (Adamkiewicz family)

“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease that nobody really wants to know about.”

The Adamkiewicz family has a map of the world hanging on the wall — with pushpins to mark where the shells have been found, they told Fox News Digital.

In addition to locations across the U.S., shells have also been scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz said.

“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease.”

“People will find the shells and take them to those places,” Adamkiewicz said. “And sometimes people will ask me for shells to take to wherever they are traveling.”

He’s also partnered with the hospital to get kids with epilepsy involved in his project, bringing shells in for them so they can paint their own designs.

Touching lives

Beyond helping to find a cure, Adamkiewicz has a goal of reducing bullying of people with epilepsy.

Adamkiewicz is pictured with his mother, Laurie Adamkiewicz. In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity. (Adamkiewicz family)

“When I was growing up, if my parents or brother weren’t there, I was always made fun of in school and in the neighborhood,” Adamkiewicz said. “Especially right after I had a seizure — the kids would just stare at me and make fun of me.”

He went on, “I want people to know it’s OK to be friends with someone with epilepsy.”

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At one point, during second and third grade, he estimates that he was having 100 seizures per day.

“It’s been a very hard and lonely life for Kyle, and very painful to see as a mother and father,” Laurie Adamkiewicz added.

The goal, she said, is that the shells will help to make life a little easier for those with epilepsy — and their families.

Adamkiewicz said his seashell project has been a therapeutic endeavor for him. “If it’s been a really bad day, that’s mostly what I’ll be doing,” he said. (Adamkiewicz family)

Adamkiewicz’s mother recalled a man who posted about a personal experience on the Facebook group.

“His son had passed away, and the man goes to the ocean every morning to say good morning to his son,” she said. “And there was the epilepsy shell, and he said he started crying. He said it was just like a gift to him.”

She added, “You never know whose lives you’re touching.”

Taking control

Since age 12, Adamkiewicz has been a patient at NYU Langone’s Comprehensive Epilepsy Center, one of the largest programs in the nation, where he’s had a series of brain surgeries.

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In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity.

Neurosurgeon Peter Rozman, M.D., performed the surgery alongside his mentor, Werner K. Doyle, M.D., Adamkiewicz’s longtime doctor.

Adamkiewicz and his mom, Laurie Adamkiewiz, are pictured with some of his painted shells. (Adamkiewicz family)

“This system has the capacity to actually record brain activity in the form of electrical waves that detect when the seizures start, so it can deliver an impulse to the brain at that time, with the goal of aborting the seizure,” Rozman said in an interview with Fox News Digital.

The data collected by the device is sent to the neurologist, who uses that information to program the device to better capture and treat the seizures, he said.

“Over time, people see more and more improvement in their seizures,” Rozman said.

Rozman praised Adamkiewicz’s seashell project, emphasizing the importance of increasing awareness of the condition.

“And it gives him an outlet, too,” the doctor said. “Having other people to talk about your condition with and being part of a community can be very helpful.”

Each shell contains a QR code that a person can scan to access information, resources and fundraisers for epilepsy. (Adamkiewicz family)

In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.

“It’s beneficial on both sides — for raising awareness and also allowing Kyle to have more control and to drive the story,” he said. 

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“It can be such a devastating thing to have to deal with on a daily basis, and having some sort of license and control over that is really important.”

Adamkiewicz agreed that his project has been a therapeutic endeavor for him.

“We want to teach people how to be kind, and how to help.”

“If it’s been a really bad day, that’s mostly what I’ll be doing,” he said.

“Like earlier today, I was painting some shells and had my ear buds in, just listening to some music. I’m just so focused on painting the shells that I zone everybody else out.”

Adamkiewicz’s shells have been found in many cities and countries around the world, including in Paris, France. (Adamkiewicz family)

Adamkiewicz and his mother are also working on a children’s book to teach kids more about epilepsy and what to do if someone is having a seizure.

“When someone has a seizure, it can be frightening to other children,” said Laurie Adamkiewicz mother.

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“So the goal is to get some information out there, to take the stigma away from the person who has epilepsy … We want to teach people how to be kind, and how to help.”