The Mental Health of Our Caregivers is Vitally Important

Did you know that between 40 and 70% of caregivers experience depression, stress and anxiety? These issues significantly impact the well-being of both family and professional caregivers, which can then hurt the quality of care that they provide.

When the mental health of caregivers is neglected, it can further lead to caregiver burnout, with 60% of caregivers reporting feeling overwhelmed.

One in four adult Americans provided ongoing care for an adult or child with a complex medical condition or a disability in the past year. That's 63 million serving as caregivers, an increase of 20 million from 2015 to 2025. Many of them reported enduring poor health, financial strain, and isolation. Too often, they provide complex care with virtually no training, and more than 13 million of them struggle to care for their own health while caring for others.

We cannot continue to treat family caregiving as invisible labor.

Our Caregivers Share Their Feelings and Experiences

United Spinal Association's Care Support Working Group members know how important mental health is for not only themselves, but also for care support professionals. They aim to share their experiences to raise awareness and highlight the importance of supporting both caregivers and their clients.

Four of our Care Support Working Group members, Ron Hull, John Mohler, Annie Streit, and Shelley Shetley, met with their caregivers to discuss mental health concerns. John's caregiver, Mary, has been his wife and caregiver for 31 years. Ron's caregiver, Hoai, has been with him for over 32 years. Annie's caregiver, Megan, has been with her for over six years. Shelley's caregiver, Kassie, has been with her for 10 months.

Each caregiver was asked the same questions, and their answers mirror the national statistics found by AARP's Caregiving in the U.S. research report, which came out this past July.

What would help support your mental health?

Mary finds prayer and exercise help her, while Hoai says she needs more rest and sleep. Megan wishes she could access mental health support at low to no cost, while Kassie says, "I rely on a strong support system at home, including my family and husband."

What are the positive aspects of caregiving that affect your mental health the most?

"Being able to help John live his best and most productive life," says Mary, and the other women had similar perspectives. Helping others brings Hoai happiness, and Megan enjoys making a difference and ensuring Annie has a normal daily life. Caring for Shelly brings Kassie happiness and a sense of purpose, especially since they are good friends.

How about the negative aspects?

"Caregiving takes so much time and effort," says Hoai. Mary feels the strain of having to do everything physically herself, and both Megan and Kassie wish they could do more. "But my limited time makes it challenging," says Kassie.

Have you ever reached out for help or resources to assist with your mental health?

Hoai and Kassie have not, but Mary reached out to her primary physician. Megan reached out for mental health services, "but not related to my caregiving occupation."

Have you ever experienced caregiver burnout?

Mary has done so before seeking treatment, and Kassie has done so in the past, while occasionally caring for a family member.

What self-care practices do you find helpful?

Hoai enjoys gardening, swimming, walking, cooking and taking naps. Megan likes getting her hair done, reading or watching movies. Mary works on her relationship with God and exercises, as does Kassie, who says, "I find keeping a gratitude journal, practicing morning grounding exercises, and hearing uplifting messages at church are very helpful for self-care."

Are you able to prioritize your own needs?

Hoai, Megan, and Kassie all agree, with Kassie adding that she sets boundaries to ensure her needs are met. But Mary acknowledges, "not very well sometimes."

Do you feel like you have a healthy work-life balance?

"I started getting sick and realized my life was out of balance, so I retired," says Mary. "And I do not regret it." Hoai works too much and has little time for herself, whereas Megan is organized, which she finds very helpful. Kassie says that she has a healthy work-life balance because of Shelly's flexibility and easygoing nature.

What boundaries do you need to set to protect your well-being?

"I am not good at setting boundaries, but I know there are certain things that I need to do for myself," says Mary. Hoai hasn't set boundaries on her caregiving, but she is turning down work at her dry-cleaning business when it is too much. Megan tries to say no more often without feeling guilty, and Kassie knows she needs to avoid overscheduling herself to have more time for rest and personal priorities.

What support systems do you have in place, or to whom do you go for support?

Mary, Megan and Kassie rely on friends and family, while Hoai says, "I do not have a support system, but I rely on Ron to support me sometimes."

What is an activity you and the person you care for can do that you both enjoy?

Mary enjoys traveling and watching educational or comedy shows together, while Hoai loves singing with Ron. They travel together when they can have another caregiver help him. Megan likes to either get outside or stay in watching Netflix, while Kassie likes "Family history, emergency preparedness, and finding yummy recipes."

What aspect of providing care causes you the most stress?

Megan says nothing, that Annie brings joy to her life, and Kassie turned the question around to how she can make caring easier for Shelly. But Mary says last-minute things stress her out. "It is difficult when things spring up on me and I have not had mental time to prepare," she says. And Hoai needs more sleep, saying it's hard, "having to wake up so many times at night to help Ron turn and take care of any of his other needs. It would help to have other caregivers for assistance, but we cannot find any."

Do you take the time to seek help when you need it?

"I have learned what my limits are," says Kassie.

Possible Solutions and Support

Building a supportive environment and practicing self-care can assist caregivers like Mary, Kassie, Hoai, and Megan in managing the challenges related to mental health. The article, "Mental Health Challenges in Home Care," offers suggestions for creating a positive experience for both caregivers and clients.

• Keep communication open. A supportive environment requires open and effective communication.
• Identify shared goals. Working toward a common goal can strengthen the caregiving relationship.
• Express gratitude. Family caregivers, care professionals, and clients should regularly express appreciation for each other to foster a supportive environment and maintain positive relationships.
• Strengthen support networks. It is important for caregivers to continually engage with their extended support networks, such as family, friends, or local organizations that can provide respite care, emotional help, and other forms of support.
• Plan for the future. Having open conversations regarding future care plans, such as planning for long-term care or organizing financial and medical affairs, can help relieve stress for both caregivers and clients.

One of the most difficult challenges for family caregivers is finding a balance between their caregiving role and their personal obligations. For family caregivers, there are numerous suggestions to help with self-care and managing stress.

• Simple actions like taking a daily walk, reading a book, or engaging in mindfulness can provide much-needed breaks.
• Setting healthy boundaries
• Use relaxation techniques such as deep breathing
• Asking for help from family or friends can alleviate some of the heavy demands
• Taking breaks and utilizing respite care services
• Find emotional support through counseling, support groups, or friends

Professional caregivers face unique challenges in finding ways to navigate the stress and burnout due to long hours and emotionally demanding situations. For professional caregivers, the suggestions above can be used, and other ideas include:

• Incorporate stress relief techniques such as time management, mindfulness, and physical exercise
• Create open communication with the caregiving team about needed workload adjustments and time off
• Home Health companies can provide resources for peer connections and counseling services

Many caregivers overlook the toll that caregiving takes on their own health and mental well-being. It is important to recognize the signs of caregiver stress and burnout. More information and resources on caregiver burnout can be found in the Care Support Working Group resource, How to deal with feelings of guilt for needing care.

United Spinal's Care Support Working Group

If you would like to collaborate with advocates from across the United States to identify policy and advocacy initiatives to improve care support services for people with diverse disabilities, you can join the United Spinal Association Care Support Working Group by filling out this online form. The disability community and our caregivers need your help to find solutions for this national crisis.

Resources

Caregiving in the US Research Report (AARP)

Caregiver Action Network

Caregiver Mental Health Toolkit (UIC)

United Spinal Association:

Care Support Working Group Resources

Processing Caregiver's Guilt (Brittany Dejean)

A Caregiver's Identity (Whitney Bailey)

New Mobility:

What Caregivers Care About (Ian Ruder)

When Parents Age Out of Caregiving (Ian Ruder)