Caring for the Alzheimer’s Caregiver

Caregivers of all kinds know the burden of supporting the health and well-being of a loved one who can’t fully care for themselves. With a degenerative and incurable condition like Alzheimer’s, this burden can be magnified, to the point that caregivers too often neglect their own self-care. In fact, research has found that informal caregivers of dementia patients experience high levels of burnout.

But caring for your own needs is the only way to properly show up for your loved one as well, which is what we ultimately want in the end. While carving out ‘me time‘ as a caregiver can feel nothing short of impossible, it gets easier with intention—and starting small is the first step.

If you’re caring for someone with Alzheimer’s, we’re here to provide you with the tools and resources you need to support your well-being so that you can stay strong for the person in your life who depends on you the most.

What You Need to Know About Alzheimer’s Disease as a Caregiver

When the COVID-19 pandemic hit in March 2020, Sue Ryan and her husband were already several years into his journey with the disease. She thought she was well-equipped for the challenge, having served as a caregiver for both her father and grandmother, but when the lockdown happened, her carefully managed system suddenly collapsed. Nevertheless, she pulled through, thanks to wells of support from other caregivers.

Ryan’s main advice to family caregivers? “Quit thinking you should be able to do it all yourself,” says Ryan. “No, you shouldn’t. Don’t struggle alone, share it. The best thing for your mental, emotional, and physical health is to have someone support you and be with you.”

Whether you’re in the throes of your loved one’s journey with Alzheimer’s or someone close to you just received a diagnosis, here’s everything you need to know about Alzheimer’s disease, caring for someone with dementia, and how to support yourself as a family caregiver so you don’t burn out—from the experts who have made caregiving and supporting Alzheimer’s caregivers their life’s work.   

Just What the Doctor Ordered (for You)

Simply put, caregiving itself can increase your risk for chronic stress and burnout. This can lead to increased chances of developing anxiety and depression, as well as physical impacts like a weakened immune system and heart disease, cancer, and diabetes.

But neglecting self-care also increases your risk of developing dementia—and that’s regardless of factors such as age and genetics, according to internal medicine physician, John Showalter, MD, MSIS.

As Dr. Showalter explains, studies have found that being a caregiver may increase your risk for dementia by sixfold. This is believed to be from the caregiver’s self-neglect—not attending to their own mental and physical well-being because they are prioritizing caregiving, he explains.

But how do we exercise self-care, and where do we find the time, as caregivers? We tapped into some experts to get their recommendations.

How I Found Meaning Outside of Caregiving 

Wendy Wisner’s loved one’s dementia came at her and her family like a tornado. Suddenly, this formerly self-sufficient member of her family simply couldn’t take care of herself anymore … and they were left to clean up the chaos her dementia had unleashed.

Caregiving on top of caring for two children and working a full-time job, Wisner barely had time to eat or sleep, let alone consider things like self-care. But over a year into this journey, she’s learned a thing or two along the way to find some relief, and what she now considers a non-negotiable.

How I’m Keeping Their Memory Alive

According to the World Health Organization (WHO), more than 55 million people worldwide suffer from dementia; every year, 10 million more join their ranks. Alzheimer’s accounts for approximately 60–70% of overall cases.

This means at any given time, millions of people are becoming caregivers to their loved ones, and are struggling to answer the same questions writer Dana Shavin and her siblings have: How do we keep the memory of our loved one alive when the person she used to be is disappearing? How can we continue to connect? 

How the Progression of Alzheimer’s Changes You

The reality of progressive conditions is that they are unforgiving and unpredictable. Whether they’re rare, commonplace, or somewhere in between, that doesn’t mean there aren’t signposts for you or your loved ones. The brain is a fickle, beautiful, confusing thing, even more so if you’re managing Alzheimer’s disease.

Lauren Nassr Willett, RN, an infusion nurse manager at the Neurology and Infusion Center of New England, says that each stage of the condition tends to bring with them a wave of different emotions that can be harnessed to improve care.

What Nobody Warns You About Caregiving

As someone who has been caregiving for a family member with dementia for the past year, Wisner will tell you point blank that she really had no idea what it was going to be like until she was doing it. While the basic tasks might seem predictable, the sheer endlessness of the day-to-day responsibilities—not to mention the physical, mental, financial, and emotional toll this kind of caregiving takes can be mind-blowing.

And while there’s some truth in the idea that you have to experience it to really understand it, hearing some honest, unedited accounts of what caregiving is really like is a fantastic way to help new caregivers prepare for the experience.

Things to Avoid When Caring for Someone With Alzheimer’s

For people living with Alzheimer’s, how caregivers respond in everyday moments can mean the difference between chaos and comfort. 

“Caregivers sometimes get so frustrated or confused by the symptoms of Alzheimer’s that they think the person is being deliberately difficult, inattentive, or moody,” says Dr. Jason Krellman, associate professor of neuropsychology at Columbia University Irving Medical Center. “Because people with Alzheimer’s can sometimes appear quite normal or do or remember some things well, we might not fully understand their deficits,” he notes. 

This is why it’s important for caregivers to understand what not to do as much as to learn what to do to better support their loved ones. Here are six key things to avoid when caring for someone with Alzheimer’s.

Grieving a Loved One Before They Are Gone

Anticipatory grief refers to intense feelings of sorrow before a loss occurs. A person may grieve as they anticipate the death of a loved one or cognitive changes due to a mental health condition like schizophrenia or terminal or age-related illness like Alzheimer’s disease. They may also experience anticipatory grief due to a divorce or non-death-related circumstances.

For those witnessing a loved one face dementia, Elizabeth Edgerly, PhD, senior director of community programs and services at the Alzheimer’s Association, says grief can be more complicated. While the sudden loss of someone to a heart attack, stroke, or accident is deeply painful, she says witnessing the decline of a loved one as they face a disease like Alzheimer’s is unique. 

Coping with the impeding loss of a loved one can take a toll, but some strategies might help with the process.