Caregiving for a loved one with Alzheimer’s disease can be both rewarding and exhausting. Many caregivers have difficulty managing their loved one’s dementia care without sacrificing aspects of their personal responsibilities, relationships, and health. If this is a familiar feeling in your caregiving experience, you aren’t alone.
Multiple studies have confirmed that dementia caregivers endure higher levels of caregiver burden than non-dementia caregivers. The physical, mental, and emotional demands of caregiving can limit your ability to care for yourself. Before long, the stress and exhaustion of these demands and burdens can lead to burnout and directly jeopardize your overall health.
Taking care of yourself is one of the most important things you can do as a caregiver. How can you provide your loved one with the best possible care if you aren’t maintaining your own health, well-being, and sense of identity? Preventing burnout begins with prioritizing self-care as part of your daily routine and your loved one’s care planning.
In honor of National Caregivers Day on February 17, the Alzheimer’s Caregivers Network asked the caregiving community to share their personal experiences and offer expert advice about caring for yourself while caring for a loved one with Alzheimer’s disease. Read what these caregivers and experts had to say:
Amber Dixon, a dietician, geriatric nurse, and CEO at Elderly Assist Inc., learned this about self-care after caregiving for multiple family members, including her grandmother, who had Alzheimer’s disease:
“My experience with burnout is that it happens when you’re not taking care of yourself or don’t have time to take care of yourself. It can be hard to find the time when you’re caring for a loved one; however, it’s important to remember that the best thing for them is having a healthy caregiver who is motivated and energized by their work. You have to make sure that you have time to go out and do things that make you feel good about yourself — whether that’s going on vacation or having a weekly movie night with friends — so that you can return to your responsibilities feeling refreshed and ready to tackle them again.”
Dixon reminds caregivers that taking care of themselves means setting aside time for rest and relaxation, eating healthy meals, and regularly exercising:
“If possible, schedule time into your day or week to go on walks or do yoga or other exercises to help you feel better physically and emotionally. If you’re not feeling well or having trouble sleeping, try practicing some techniques that can help. For example, drinking warm tea before bed, using essential oils on your pillowcase or skin to help you relax, or taking deep breaths when anxiety hits so that it doesn’t spiral into something bigger.”
Charlotte Nuessle, a counselor, author, and certified yoga therapist at Growing in Wellness, says caregivers should be as kind to themselves as they are to those they care for:
“Guilt and shame are two difficult emotions we caregivers commonly face, but self-kindness is an antidote to shame. I’ve found that reaching for what’s within our grasp is a good place to start practicing self-kindness. Find simple ways to make little shifts away from stress, like planning mini self-care breaks throughout the day.”
Nuessle offers ways to create new self-care patterns:
“Self-care is a lifestyle practice; results come from repeating little choices often. Self-kindness is not dramatic but rather a gradual process to embody. Patience and forgiveness toward ourselves and humility to acknowledge what is out of our control make a huge difference. As caregivers, we can benefit from having a supportive relationship with someone else to help us accept the difficulties we face and discover how to create new patterns through self-care.”
Caregiver advocate and dementia consultant Kat Verdi suggests caregivers coordinate quick self-care treatments with their loved one’s appointment schedule:
“Self-care is important, yet it never seems to make the priority list. Here’s a helpful tip: if your loved one has therapies that require an allotted time, coordinate a hand or foot massage during that block of time. Yes, either of those types of massages is a stress reliever, and they absolutely rejuvenate a person! They also are less time-consuming.”
Lisa Dunlap, a nurse burnout coach and holistic nurse practitioner at Nurse Your Soul, encourages caregivers to incorporate 1-minute self-compassion practices throughout the day:
“When we feel stressed, lonely, or tired, our inner critic emerges, and negative thoughts and exaggerated thinking can occur; then we feel even worse. Take a moment to place your hand on your heart, honor what you are feeling, and recognize you aren’t alone in these feelings. Think of kind words that a friend or family member would say to you and say those words to yourself. This practice helps reduce the loneliness, stress, and isolation a caregiver might feel.”
Dunlap also suggests integrating mini moments of mindfulness into daily habits:
“A great mindfulness practice is engaging your five senses (sight, sound, taste, touch, and smell) and noticing them without judgment; this takes your brain out of the amygdala (fight or flight, worry, fear) mode and into the present moment where your peace is. You can combine this with everyday tasks like washing your hands or walking to and from your car. In this way, you aren’t adding another thing to your to-do list.”
The burnout coach says a great way for caregivers to avoid burnout is finding meaning and purpose in their day-to-day lives and building a strong support system:
“Each day, reconnect to what gives you meaning and purpose in small ways. Remind yourself of who you used to be and still are, despite your caregiving duties.Make a list of all the things that light you up, that you are passionate about, and that bring you joy. Carve out time for one of these activities each week or each day. Put yourself on your calendar and make it a non-negotiable. You should also find a therapist, a support group, a life coach, or a friend with whom you can share your issues. Ideally, do all of these things.
For caregiver Patti LaFleur, self-care comes down to the small things:
“Journal, take a breather, read a few pages of a book, watch a favorite TV show, take a bath. Find small things. Take time for you to be YOU. Schedule respite breaks, whether that means a family member watches your loved one or you hire extra help for a break. Find a ‘person’ — someone who can be your safe space to vent or call for advice. It can be someone you know in real life, a support group, or an online friend.”
Ari Parker, a Medicare expert and the co-founder and lead advisor of Chapter, encourages caregivers to find out whether their Medicare health insurance plan offers any benefits that can help offset the strain that can come with being a caregiver:
“For those on Original Medicare, Part A covers and/or Part B cover limited home health services. Some Medicare Advantage plans also offer additional benefits such as caregiver support services or home modifications. The benefits offered for home health care vary widely, so it’s important to work with an independent advisor to compare all your options.
Technically, people are eligible for home health care if they are getting these services under a doctor’s recommendation and the recommendation is reviewed regularly to ensure the care is required. In practice, it can be challenging to qualify for home health care because many of the services fall into custodial or nursing care, which Original Medicare does not cover. However, Medicare Advantage plans may offer at-home support depending on where you live. My biggest piece of advice is to reach out to a trustworthy and independent Medicare advisor if you’re uncertain.”
“Do your best to prioritize sleep – go to bed as early as possible and wake up before your loved one so you can get in time for yourself. What you do with that time is up to you — breathe, mediate, scroll on your phone, read, journal, enjoy joyful movement, tackle chores, whatever — but gift yourself that time.” — Phelangreatnutritioncoaching
As a caregiver, Violet Alden avoids burnout by leaning into friends, family, or their community for support:
“Don’t be scared to ask for what you need; people want to help but don’t always know how to help or what to offer.” — Violet_Alden87
The Loop Village, a company that provides online community to seniors through live events, classes in fitness, music and more, said:
“Finding time for yourself, even ten minutes every day, can make a difference.”
Jennifer Prescott, a registered nurse, certified dementia practitioner, and founder and COO of Blue Water Homecare, tells caregivers that prioritizing self-care begins with building a community of support:
“Being a caregiver has its ups and downs, including limited time to participate in groups or outside activities. It is essential to prioritize finding a community of people that are also caregivers. This may include joining a support group (online or in-person) or attending a group’s activities. The friendships built in these networks can be life-changing.”
Prescott also suggests caregivers prioritize self-care by intentionally scheduling time away from their caregiving duties each week:
“It is helpful to schedule self-care into your calendar each week as if it is an important appointment. Take this time to exercise, spend time with friends and family, or do things that fill your cup and spark joy in your life.”
The clinician and her family learned first-hand the value of extra support from a caregiving agency for her mother-in-law’s Alzheimer’s care. She urges others to meet with an agency if they need help balancing their self-care and loved one’s care:
“As a registered nurse, business owner, and member of the sandwich generation myself (caring for both school-aged children and elderly parents), I recognized the importance early on that as my mother-in-law’s dementia progressed, she needed more care. We scheduled regular care with a homecare agency that specialized in caring for seniors with Alzheimer’s disease. Having a caregiver allowed us to keep my mother-in-law home for a longer period of time before we had to transition her to assisted living due to increased care needs. Many agencies will allow you to sign up and only use them as needed. This is a great solution that will allow you to have a professional available to support your loved one while you take time for your own self-care or family/work responsibilities.”
“Getting 8 hours of quality sleep is essential for both physical and mental health. It can help you feel more energized, reduce stress, and improve your overall well-being to be at your best to care for others. You can start by creating a comfortable sleeping environment, avoiding caffeine late in the day, exercising regularly, and avoiding screens before bedtime. Taking these steps will help you get the restful sleep that you need to stay healthy and energized.”
Finally, Tiffany Robles reminds herself (and all fellow caregivers) that you can’t pour from an empty cup:
“You have to take care of yourself first before you pour into others’ cups. Make it a priority to do something for yourself so you have more energy and enthusiasm to take care of your loved one.”