Caregiving Impact on Utah Families

Caring for a child, youth, or adult with a disability or special healthcare need can bring love, connection, and meaningful moments. It can also involve appointments, medications, school meetings, paperwork, financial decisions, and constant problem-solving.

For many parents and family members, caregiving becomes part of everyday life. They may not even think of themselves as caregivers. They are simply doing what their loved one needs. But caregiving takes time, energy, and resources. Understanding its impact can help families recognize their own needs, find support, and know they do not have to manage everything alone.

The Growing Impact of Family Caregiving

Family caregivers play an essential role in supporting people with disabilities, complex medical conditions, and other support needs. According to the 2025 Caregiving in the U.S. report from AARP and the National Alliance for Caregiving, approximately 63 million American adults, nearly one in four, provided ongoing care to an adult or child with a medical condition or disability during the previous 12 months.

In Utah, the need is equally significant. The report’s state-level findings estimate that 697,000 Utah adults, or 28% of adults in the state, provide care to a family member or friend with complex medical conditions or disabilities.

These numbers include people caring for children as well as adults. Many caregivers help loved ones with daily activities, coordinate medical care, provide transportation, manage medications, and advocate for needed services.

Family caregiving is essential work, even when it is unpaid and happens behind the scenes.

Research sources: Caregiving in the U.S. 2025 and Caregiving in the U.S. 2025: Caring Across States.

Emotional and Mental Health Impacts

Caregiving can bring joy and purpose, but it can also create stress, worry, and emotional exhaustion. Parents may worry about their child’s health, education, future independence, or access to appropriate services. They may also feel pressure to make difficult decisions while balancing other family members’ needs.

The 2025 national caregiving research highlights the challenges caregivers face as they manage their own well-being alongside the needs of the people they support. Utah’s state-level findings show that 32% of family caregivers experience high emotional stress while caregiving, and 17% report feeling alone.

These experiences can be especially difficult when families have limited help, face long waits for services, or feel they must continually advocate for their loved one.

It is important to remember that experiencing stress does not mean a parent is doing something wrong. Caregiving can be demanding, and needing support is a normal part of the experience.

Ways to support emotional well-being

• Talk with someone you trust about what you are experiencing.
• Connect with other parents or caregivers who understand your situation.
• Consider counseling or other mental health support when you need it.
• Ask family members or friends to help with specific tasks.
• Permit yourself to take breaks without feeling guilty.

You do not have to wait until you feel completely overwhelmed to ask for help.

Physical Health and Everyday Demands

Caregiving often requires physical energy as well as emotional strength. Depending on a person’s needs, family members may assist with mobility, personal care, medical routines, supervision, transportation, and household responsibilities.

Caregivers may also postpone their own medical appointments, sleep less, or struggle to find time for exercise and rest. In Utah, one-quarter of family caregivers report seven or more days per month of poor physical health, according to the 2025 state-level caregiving report. Sixteen percent say they have difficulty taking care of their own health while focusing on the needs of the person they support. These findings are a reminder that caregiver health matters, too.

Small steps that can help

• Keep your own medical appointments whenever possible.
• Ask about respite care or other services that give you time to rest.
• Break large tasks into smaller, manageable steps.
• Accept help with meals, errands, transportation, or household chores.
• Look for ways to make daily routines easier rather than expecting yourself to do everything.

Self-care does not have to mean a vacation or an entire day away. Sometimes it means getting enough sleep, attending your own appointment, or having someone else handle one responsibility.

Financial Impacts of Caregiving

The financial impact of caregiving can extend well beyond medical bills. Families may pay for specialized equipment, transportation, therapies, medications, home modifications, or other needs that are not fully covered by insurance or public programs.

Some caregivers also reduce their work hours, turn down opportunities, or leave employment to meet their loved one’s needs.

A 2025 AARP report on Utah caregivers found that:

• 80% pay out of their own pockets to help meet their loved one’s needs.
• Caregivers who pay out of pocket spend an average of $7,200 annually, representing approximately 25% of their income.
• 36% report financial setbacks, such as taking on debt, using savings, or struggling to afford basic necessities.
• 63% work while also providing care.

These findings illustrate how caregiving can affect a family’s financial stability, both now and in the future.

Ways to explore financial support

• Ask service providers about financial assistance, sliding-scale fees, or payment options.
• Explore Medicaid eligibility, disability-related services, and available home- and community-based supports.
• Ask about respite services and other programs that may reduce out-of-pocket expenses.
• Explore whether your loved one qualifies for Supplemental Security Income (SSI), Medicaid, or other benefits.
• Contact a qualified benefits counselor or local service agency to understand your options.

Eligibility and available services vary. Not every family qualifies for every program, but asking questions can help you identify resources you may not know about.

Social Connections and Family Relationships

Caregiving responsibilities can make it harder to maintain friendships, participate in community activities, or spend time with a spouse, partner, or other children. Families may turn down invitations because of medical needs, accessibility concerns, behavioral support needs, financial limitations, or unpredictable schedules. Over time, these experiences can contribute to isolation.

Other family members may also need support. Siblings, for example, may have questions or worries about their brother or sister’s disability, their family’s changing routines, or their own future responsibilities. Finding ways to stay connected can help families feel less alone.

Ideas for maintaining connections

• Choose activities that work for your family’s needs and energy level.
• Invite friends or relatives to participate in ways that are comfortable and accessible.
• Make time for individual conversations with each child.
• Connect with parent groups or other families who share similar experiences.
• Ask about inclusive community programs and accessible activities.

Family life may look different from what you originally imagined. That does not mean meaningful relationships, enjoyable activities, and shared experiences are out of reach.

Finding Support as a Caregiver

You do not have to navigate caregiving alone. Support may come from family and friends, community organizations, healthcare professionals, schools, or disability service providers.

Depending on your family’s circumstances, helpful options may include:

• Respite care: Temporary care that gives family caregivers time to rest or attend to other responsibilities.
• Caregiver support groups: Opportunities to share experiences and learn from people who understand.
• Parent-to-parent support: Connections with parents who have experience navigating disability-related systems and services.
• Disability services: Programs that may provide support coordination, in-home services, community participation, or other assistance for eligible individuals.
• Benefits and financial guidance: Help understanding public benefits, service eligibility, and available financial resources.

Utah resources for caregivers

• Utah Parent Center

The Utah Parent Center provides free information, parent-to-parent support, and guidance for families of children, youth, and young adults with disabilities and special healthcare needs.

Visit the Utah Parent Center

• Utah Caregiver Support Program

Utah’s caregiver support services may offer respite, case management, personal care assistance, adult day services, support groups, and referrals. Eligibility depends on the caregiver’s and care recipient’s circumstances, and services vary by area.

Learn about Utah caregiver support services

• Utah Division of Services for People with Disabilities (DSPD)

DSPD provides information about services and supports for eligible people with disabilities, including support coordination, respite, and community-based services. Availability depends on program eligibility and individual needs.

Explore DSPD services

• Utah 211

Utah 211 can help families identify local resources for basic needs, community services, and other forms of assistance.

Visit Utah 211