How to Prevent Dementia Caregiver Burnout: The Sense of Life Put on Hold

Dementia is a progressive disease that impacts memory and gradually affects a person's ability to perform basic tasks.  

Whether you’re caring for a spouse or a parent, this complex and devastating disease can overwhelm and consume the lives of unprepared family caregivers.  

We understand dementia caregiving is hard, and many caregivers don’t know what to expect and are often surprised by the extent to which caregiving impacts their lives.  

We’re here to help!  

In this article, we’ll discuss what to expect as a dementia caregiver, how to set realistic expectations, common feelings that may arise, and tips for managing them. 

Setting Expectations as a Dementia Caregiver 

When most people agree to care for a loved one with dementia, they often do so out of a sense of family duty or love.  

However, they don’t fully understand or grasp the commitment. Caring for a loved one with dementia is physically, mentally, and emotionally demanding. 

Family caregivers are often unprepared for the profound long-term impact caregiving will have on their lives when they agree to care for a loved one with dementia, especially as the disease progresses.  

Dementia can last over a decade, which means many years of caregiving that can eventually feel like a lifetime commitment.  

As the condition progresses, individuals will eventually need 24/7 care for bathing, dressing, and feeding, as well as for challenging behaviors such as agitation, wandering, and personality changes. 

You also need to be prepared for unexpected sacrifices as the demands of caregiving grow, such as missing out on vacations, career opportunities, or social events. 

Caregivers must decide how to balance the responsibilities of caring for their loved one with their personal needs and desires. 

Having realistic expectations and being prepared for caregiving responsibilities is crucial to your physical and emotional health and will allow you to be a better caregiver. 

Common Emotions Experienced by Dementia Caregivers 

Many caregivers are unprepared for the emotional toll of caregiving that comes with watching a loved one lose their memory, independence, and aspects of their personality.  

These changes can be heart-wrenching to witness, leaving family caregivers feeling overwhelmed and isolated, which can take a toll on emotional and physical health.  

According to the National Library of Medicine, dementia caregivers are at increased risk for burden, stress, depression, and a variety of other health complications.  

Making it crucial for dementia caregivers to expect certain feelings and know they’re normal and common among dementia caregivers.  

Feeling Like Life Is Unfair 

Dementia is an unfair disease. Feeling trapped with the constant responsibility of being stuck in a role you didn’t fully understand when you agreed to caregiving is normal. 

Seeing friends or family members not helping with caregiving, enjoying vacations, or living without the stress or worry of caregiving can cause resentment and envy. 

Feelings of Isolation 

Dementia caregiving is time-consuming, and many caregivers find themselves missing out on important social events or celebrations. The responsibility of caregiving can make it difficult to plan or participate in social events or activities.  

Most people don’t understand the planning it takes to accept an invitation when you’re taking care of someone with dementia. 

This can cause caregivers to feel cut off from social circles, leading to loneliness, frustration, and resentment. 

Feeling a Loss of Freedom 

It’s normal for caregivers to feel as if they’re losing their freedom because they’re unable to make spontaneous plans or decisions.  

Losing the ability to accept a last-minute invite, run an errand without looking for a fill-in, or being worried about leaving a loved one alone can be disheartening. 

Feeling Like Your Life is Slipping Away 

It can be easy to feel like your life is slipping away when caring for a loved one with dementia, especially after several years. 

Caregivers often feel like there’s no light at the end of the tunnel. Missing events such as birthdays, family vacations, or anniversaries can feel like you're missing out on life. 

These feelings are normal and justified. Dementia is not a friend when it comes to family relationships or your personal life. 

Know that there are ways to cope with and manage your feelings. 

Managing and Coping with Emotions 

All of your feelings as a dementia caregiver are valid. Never feel guilty about your feelings, and know you’re not alone. It’s essential to learn how to manage your emotions, and there are effective ways to cope.  

Seek Out Helpful Resources  

There are a variety of resources available for families dealing with dementia. If you’re feeling anxious, depressed, or overwhelmed, consider making an in-person or virtual appointment with a therapist.  

You can also contact the Alzheimer’s Association for virtual or in-person support groups.  

In addition, there are message boards and online communities where caregivers and family members can ask questions, get advice, or find support. 

Dementia support groups allow you to connect with others who are facing similar challenges, provide opportunities to speak honestly about your feelings and share your experiences without guilt or shame.  

Set Boundaries 

It’s important not to put your life on hold when caring for a loved one. Setting boundaries is crucial, and you shouldn't sacrifice everything that brings you happiness.  

Make time for hobbies, activities, volunteering, or even a vacation. 

Take a Break From Caregiving 

Don’t ever feel guilty about needing a break from caregiving. You need and deserve time away from the daily responsibilities of caring for a loved one with dementia.  

Taking breaks, even small ones, is essential for your well-being. 

Consider asking a loved one to fill in while you go out to dinner with friends, or take some time for yourself to enjoy a massage, manicure, and pedicure.  

You can also contact a local respite care service for information to explore options for professional care for your loved one for a few hours or a few days each week. 

If you need permanent or long-term care, senior living care is designed to enrich the lives of seniors living with dementia, including Alzheimer’s Disease or other memory-related issues.  

Maintain Your Identity 

Remember who you were before becoming a caregiver. Don’t forget to live your life, don’t lose your identity. Have fun, laugh, and engage in activities that provide personal fulfillment. Continue to make plans for your future. 

Wrap-up 

Caring for a loved one with dementia is a journey filled with rewards and challenges. During difficult times, when you're feeling overwhelmed, it’s important to remember that your life is about more than just merely surviving.  

What you’re doing is an act of love. Don’t beat hard on yourself when things aren’t going well. Ask for help, prioritize self-care, and give yourself grace. Taking care of your emotional and physical health is crucial and will make you a better caregiver. 

To learn more, listen to the “How to Prevent Dementia Caregiver Burnout” episode of The Disappearing Mind, an award-winning podcast hosted by National Dementia Coach Dawn Platt that helps listeners navigate along their personal journey with dementia through exclusive and direct perspectives of people diagnosed with the disease, their caregivers and experts in the field.