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When a loved one is living with dementia, caregiving involves much more than helping with everyday activities. Family caregivers often coordinate medical appointments, communicate with healthcare providers, manage medication information, arrange transportation, navigate insurance questions and turn medical instructions into daily routines.
Much of this work happens behind the scenes. It may go unnoticed until an appointment is missed, instructions are misunderstood, or an important follow-up falls through the cracks.
A study published in the October 2026 issue of the Journal of General Internal Medicine examined the healthcare coordination responsibilities of 467 primary family caregivers of people with probable dementia. Using data from the National Study of Caregiving and the National Health and Aging Trends Study, researchers explored the tasks caregivers perform and the challenges they encounter.
Approximately 92.5% of caregivers reported performing at least one healthcare interaction task. Speaking with healthcare providers, scheduling appointments and attending medical visits were among the most common responsibilities. Caregivers identified coordinating care, managing insurance matters and navigating transitions after a hospital stay as particularly difficult.
The study was cross-sectional, meaning it captured caregivers’ experiences at one point in time. It highlights the demands of care coordination but does not establish that a particular program or tool will solve these challenges.
Returning home after a hospital stay can bring relief, but it can also introduce a new set of responsibilities.
Families may need to understand updated medication instructions, schedule follow-up appointments, arrange equipment or services and recognize warning signs that require medical attention. Meanwhile, the person living with dementia may feel tired, unsettled, or confused by the change in routine. The family caregiver may be trying to manage these responsibilities while recovering from the stress of the hospital experience.
Clear communication can help families prepare for this transition.
Before leaving the hospital, caregivers can ask:
Request written instructions in a format that is easy to understand and reference at home. Caregivers can also use the teach-back method by explaining the plan in their own words and asking the healthcare team to clarify anything that remains uncertain.
Teach-back helps confirm that instructions were communicated clearly. It is not a test of the caregiver’s intelligence or ability.
When several family members, healthcare providers and support professionals are involved, keeping track of information can become overwhelming. A simple care notebook or secure digital record can help everyone stay organized.
It does not need to document every detail. Focus on information that caregivers and authorized members of the care team may need to reference regularly.
Consider including:
Keep personal health information secure and share it only with appropriate, authorized individuals. Whenever possible, involve the person living with dementia in decisions about their information and care, respecting their preferences, abilities and privacy.
Care coordination should not rest entirely on one family member’s shoulders. Healthcare providers and community partners can help by asking who manages appointments, communicates with clinicians and follows up on recommendations. They can also ask whether that person has enough support to continue managing these responsibilities.
Even a caregiver who provides only a few hours of hands-on assistance may be carrying a significant administrative burden.
Effective handoffs make responsibilities clear. Families should know what needs to happen next, who is responsible and whom to contact with questions. When multiple organizations are involved, consistent communication and an updated medication list can help reduce confusion.
Caregivers should feel comfortable asking questions when instructions are unclear or responsibilities overlap. Identifying concerns early may help prevent avoidable misunderstandings and make the process more manageable.
While medical care coordination requires communication with healthcare professionals, non-medical home care can help families manage some of the everyday responsibilities surrounding dementia care.
Depending on an individual’s needs and the services arranged, home care may provide assistance with:
Home care does not replace medical treatment, clinical care management, or professional interpretation of hospital discharge instructions. Families should confirm the scope of available services and ensure that medical questions are directed to the appropriate healthcare professionals.
ComForCare Home Care North San Diego understands that supporting someone living with dementia also means recognizing the needs of the people who care for them. Depending on the family’s care plan, home care support may help maintain familiar routines, provide companionship and give family caregivers time to focus on other responsibilities.
Dementia caregiving is a continuous responsibility. The work between appointments, making calls, tracking information, arranging services and following up on instructions, can take time and energy that families may struggle to find.
The findings of this study highlight an important part of the caregiving experience: families often do substantial healthcare coordination work that others may never see.
Clear instructions, shared records, defined responsibilities and appropriate support can help make that work more manageable. Just as importantly, caregivers deserve to have their own needs acknowledged rather than being expected to handle everything alone.
If your family is caring for someone living with dementia, you do not have to navigate every part of the journey by yourself. Learning what support is available can be a meaningful first step toward creating a more manageable routine for everyone involved.
ComForCare Home Care North San Diego is here to help families explore personalized in-home care and respite options that may fit their needs.
Call 858-247-1005 to learn more about available home care services throughout North and East San Diego County.
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