The Emotional Toll of Caring For a Loved One With Alzheimer's Disease

Alzheimer’s disease, a type of dementia that destroys memory and other important mental functions, is an unforgiving condition for which, unfortunately, there is no cure. And it can be incredibly painful to watch its progression in a loved one.

As a labor of love, friends or family members often voluntarily take on the role of caregiver. But this can come at a cost to the individual providing care.

A survey from the Associated Press-NORC Center for Public Affairs Research found that nearly half of long-term caregivers aren't just running errands and driving to doctor appointments, but are also performing medical care like changing catheters or inserting feeding tubes. Less than half of these individuals reported receiving training for these tasks.

This kind of work can be stressful and demanding, especially for individuals who are inexperienced or unprepared.

Emotional Impact

Caregiving is not just a physically challenging job, but an emotionally challenging one, as well. Caregivers are often family members or friends managing their own complex feelings about the person and diagnosis, says psychotherapist Idil Ozturk, LMSW.

When a loved one receives an Alzheimer’s diagnosis, it can be devastating. Feelings of fear, sadness and anger at the circumstances are likely to bubble up. Ozturk points out that anticipatory grief is also common, which occurs when the grieving process begins before the diagnosed person’s death.

Serving as caregiver adds complexity to this in the form of exhaustion and irritability, which can sap mental health over time. The AP survey found that caregivers of individuals with Alzheimer's and other conditions that affect mental status experienced more stress and sadness than caregivers of individuals with other illnesses. Research shows that depression and anxiety are common.

By getting to know the symptoms of the disease, you'll have a better idea of what to expect and how to deal with it, Ozturk says. Then you can more easily avoid pain and frustration.

“If a person with Alzheimer's is saying ‘Where am I? I want to go home!’ they might be trying to communicate that they don't feel comfortable,” Ozturk says. “Instead of getting frustrated and saying ‘We are home!’ try asking if they need something, are they too hot or too cold? Are they hungry or tired?"

People with Alzheimer’s are prone to exhibit aggressive and irritable behavior at times, which can feel hurtful and frustrating. But reframing this type of behavior as a brain malfunction rather than an attack can help a caregiver avoid resentment or take comments or behaviors too personally.

Utilizing a Care Team

Caregiving can be isolating, as it's demanding of both time and energy. Being unable to leave your loved one alone or dealing with low energy levels at the end of the day can lead to social isolation which can worsen mental health. It’s crucial to ask for help.

"It is important to keep in mind that we all need support," says Kristin Papa, LCSW. "Many of us have a hard time asking for help even when life is overflowing. It's important to practice self compassion, recognize when we're feeling stressed and overwhelmed, and ask and accept help from other family members, friends, or community members." 

Support groups can be incredibly helpful. By joining or chatting with a community of others going through same experience, you'll learn more about not only the symptoms and progression of the disease, but also insight into coping with more challenging behaviors.

Assembling a strong care team and/or using respite services can reduce the burden of caregiving on a single individual. Kristen Osterhoudt, regional coordinator for education and training services for the Alzheimer’s Disease Caregiver Support Initiative suggests making a list of needs, like planning doctor appointments, medication management, household chores, grocery runs and meal prep, then divvying up those tasks among the team.

"Often caregivers will wait until they are totally burnt out to ask for help," Osterhoudt says. "Don't wait. Reach out and get the help you need to take care of yourself and the individual."

It's easy to take on too much when it comes to our loved ones, but boundaries are important. While the person's health and safety may feel like your top priority, it's important to keep in mind that they're not the only ones that need, and deserve, care.

Making Time for Self-Care

Licensed clinical psychologist Kathy Nickerson, PhD, served as her father's caregiver for eight years as he struggled with Parkinson's disease and dementia. While she admits it was difficult, she's glad to have given him the end-of-life care that she wishes everyone could have. To do this, practicing self-care is absolutely necessary.

"You simply cannot take care of anyone else if you do not take care of yourself," Nickerson says. "Even if it feels easy to be a caregiver now, slow down and pace yourself. This is a marathon, not a sprint."

She recommends taking breaks and making time for activities that help you recharge, whether that looks like meditation, exercise, reading books or taking day trips. Carving out time to rest, eat well and attend your own doctor's appointments is just as important.

It can be difficult to separate your role as caregiver from your normal role in their lives, so it's important to continue to find ways to enjoy your relationship with the person. This could be through meaningful activities like gardening or listening to music.

"It is a very hard, messy and often thankless job," Nickerson says. "Remind yourself about why you are giving this gift and look for the bright spots. There will be nice moments mixed in with the mundane and moments of clarity when your loved one will connect with you. Focus on what you can be grateful for, focus on just today and being in the moment."