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Caregiving can bring love, pride, purpose, humor and connection. But it can also feel lonely at times. Both can be true at the same time.
A study published in October 2026 looked at care burden and loneliness among 147 parents providing unpaid care to sons or daughters with intellectual disabilities. The researchers found that greater care burden was associated with greater loneliness, even after considering factors such as gender, employment status and the number of people living in the household.
The study was conducted in Türkiye and was cross-sectional, meaning it looked at experiences at one point in time. It cannot show that caregiving burden causes loneliness and its findings may not reflect every family or community.
Still, the research raises an important question: How are caregivers doing, beyond the tasks of caregiving?
Families often spend their time focused on appointments, transportation, daily routines, personal care, paperwork and other responsibilities. It can be easy to overlook something just as important the caregiver’s own need for connection and support.
Feeling lonely does not mean a caregiver is less devoted.
Someone can spend much of the day with their loved one and still have very little time to connect with friends, relatives, other caregivers, or people who understand what they are experiencing.
Some caregivers may also hesitate to ask for help. They may worry that someone else will not understand their loved one’s routines, preferences, communication style, or needs.
Every family is different. Some people with intellectual disabilities need occasional assistance, while others may need support throughout the day. Some families have a strong network of relatives and friends nearby. Others may be managing most responsibilities with only one or two people.
Work, finances, transportation, culture, language, health and access to services can all influence a family’s experience.
The following questions are not a clinical screening tool. They are simply a way to pause and think about whether the caregiver has enough support.
1. Who can I talk with honestly?
Is there someone you can talk to without feeling judged or pressured to have all the answers? This might be a friend, family member, another caregiver, counselor, faith community, or peer support group.
Having someone who will simply listen can make a difference.
2. What is one task someone else could share?
Support does not always mean someone taking over caregiving. It could be helping with an errand, preparing a meal, providing transportation, making a phone call, or learning one familiar routine well enough to give the primary caregiver some time away.
Even small amounts of shared responsibility can create breathing room.
3. When is my next real pause?
A break should be more than time spent catching up on laundry, dishes, or other responsibilities.
When possible, make room for something that is genuinely restorative rest, a walk, a favorite hobby, time with a friend, worship, or simply some quiet time.
If there is no pause anywhere on the calendar, that may be a sign that it’s time to talk about additional support.
For families receiving Regional Center services, a Service Coordinator can be a starting point for questions about available supports.
Depending on the individual’s needs, services, authorizations and local availability, families may discuss options such as respite, Coordinated Family Supports, Supported Living Services, Independent Living Services, personal assistance, behavioral or communication supports and other community resources.
These services are not interchangeable and eligibility or authorization depends on the individual. Families should speak directly with their Regional Center or Service Coordinator about their specific circumstances.
A helpful conversation might include questions such as:
Good support is about more than completing a list of tasks.
For a person with an intellectual disability, meaningful support should help preserve choice, dignity, relationships, interests and participation in everyday life. At the same time, families need support that makes caregiving more sustainable.
Asking, “How is the caregiver doing?” can be an important part of that conversation.
At ComForCare Home Care North & East San Diego, we believe in starting with the individual and family not a one-size-fits-all approach. Personalized in-home support can help families share some of the day-to-day responsibilities while respecting the person’s routines, preferences and independence.
If your family is considering additional support at home, we’re here to listen and talk through your needs and goals.
Call ComForCare Today: 858-247-1005
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