Why Alzheimer’s Caregivers Need People Who Actually Get It

In partnership with Hilarity for Charity

Written By: Amanda Quezada, Associate Director of Communications at Hilarity for Charity (HFC) 

Caregiving can be difficult to explain to someone who’s never lived it.

Beyond the growing list of responsibilities and physical tasks, caregivers carry an enormous mental load. There is always something to track, anticipate or decide, along with the constant awareness of how their person is feeling and what they may need next. 

All of this happens while navigating the complicated and often conflicting emotions that come with loving and caring for someone with dementia.

A well-meaning friend can listen, offer help and even show up in meaningful ways. But there is something uniquely powerful about connecting with another caregiver who just gets it. Someone who understands the weight and depth of the experience without requiring you to explain every part of it.

Every dementia journey is different, but so much of the caregiving experience is shared, including the ways it challenges, shapes and changes us. That’s why community can be one of the most important resources for a caregiver, helping them feel understood, supported and better equipped to move through the journey without losing themselves along the way.

The Isolation That Comes With Alzheimer’s Caregiving

The mental load of caregiving is difficult to measure, but the time and responsibilities behind it tell part of the story.

Nearly 13 million people in the United States provide unpaid care for someone living with Alzheimer’s or another dementia. In 2025, they provided an estimated 19.6 billion hours of care, averaging nearly 30 hours per caregiver each week.

Those hours rarely follow a predictable schedule. As dementia progresses, caregivers may take on more supervision, personal care, medical tasks and decision-making. A national longitudinal study found that one additional self-care need for a person living with dementia was associated with 28 more hours of family care per month.

New responsibilities rarely replace old ones. They are added to what the caregiver is already managing, often leaving less time to rest, connect with others or care for their own health. Research has linked the progression of dementia symptoms, including changes in daily functioning and behavior, with increasing caregiver burden over time.

The Gap Between Sympathy and Real Understanding

Friends and family can be an important source of support. They can bring a meal, help with an errand or give you space to talk. But even the most well-meaning person may not fully understand the realities of dementia caregiving.

They may not understand why a small change in routine can reshape an entire day. Why time away can bring relief and guilt at the same time. Or why you can experience grief, frustration, love and even laughter within the span of a few minutes.

Connecting with other dementia caregivers is different. There is less explaining to do and no need to make the experience sound easier than it is. They understand the constant vigilance, the complicated emotions and the decisions that can feel impossible to make.

That sense of understanding is more than comforting. It can help caregivers feel less isolated and more equipped to manage what comes next.

What Changes When You Find People Who Actually Get Caregiving

Research shows that social support can help protect caregiver well-being and reduce some of the strain associated with dementia care. A systematic review and meta-analysis found that psychosocial interventions, including approaches that combine education, coping strategies and emotional support, can improve outcomes for family caregivers.

Peer connection offers something especially valuable: support from people with lived experience. Caregivers can exchange practical ideas, learn from one another and speak honestly about parts of the journey they may not feel comfortable sharing elsewhere.

Community doesn’t remove the responsibilities of caregiving. It can, however, change how alone someone feels while carrying them. That matters, especially as caregiving demands increase and opportunities for social connection become harder to come by.

Signs It May Be Time to Seek Support

It can be easy to put your own needs aside when so much of your attention is focused on caring for someone else. But there are signs that additional support and connection may be helpful, including:

• You feel increasingly isolated or disconnected from people in your life
• Stress, sadness, anger, guilt or anxiety feel difficult to manage
• You rarely have time or energy to care for your own needs
• You feel like no one around you truly understands what you’re experiencing
• You are having trouble sleeping, concentrating or keeping up with everyday responsibilities
• You find yourself needing a space where you can talk honestly without worrying about judgment or burdening someone else

Reaching out doesn’t have to mean waiting until caregiving feels unmanageable. Support can also be a way to stay connected, process what you are experiencing and build tools for what may come next.

How Alzheimer’s Caregivers Can Get Support

No single form of support will meet every caregiver’s needs. Alzheimer’s and dementia-specific support groups, whether online or in person, can provide a space to connect with people who understand the realities of caregiving. Therapy can offer more individualized support for caregiver stress, grief, anxiety and changing relationships. Many caregivers may benefit from both.

That understanding is at the heart of Hilarity for Charity’s (HFC) work, and at the heart of their partnership with BetterHelp. HFC is a national nonprofit with a mission to care for families impacted by Alzheimer’s disease, activate the next generation of Alzheimer’s advocates and lead in brain health research and education. 

They offer free Online Support Groups that bring together caregivers with shared experiences in welcoming spaces led by credentialed social workers, counselors and trained leaders. Groups are available for spouses and partners, adult children, Spanish-speaking caregivers, BIPOC caregivers, LGBTQIA+ caregivers and others.

Among caregivers surveyed for HFC’s 2025 Impact Report:

• 94% said their group helped them connect with other Alzheimer’s caregivers
• 89% said it helped them manage caregiving stress
• 83% said it improved their well-being
• 89% said it helped them feel more emotionally prepared to continue caregiving

Community doesn’t remove the responsibilities of caregiving. But having a consistent place to turn can make the experience feel less isolating and give caregivers space to speak honestly, learn from others and feel understood.

Every dementia journey is different, but no caregiver should have to navigate it alone. Sometimes the most meaningful support comes from someone who simply gets it.