Family caregivers & shared care

Family caregivers often connect parts of care that an organization sees separately: appointments, routines, conversations, transportation, and changes at home. Shared care begins by asking who is involved, what each person is willing and able to do, and what support they need themselves.

The person receiving care remains central. A relative’s involvement should reflect that person’s preferences and the applicable permissions for sharing information. Family participation is not the same as giving every relative the same role or expecting one person to become an unpaid coordinator for the whole system.

The 2025 AARP and National Alliance for Caregiving report (opens in a new tab) estimates that 63 million American adults provided care for an adult or a child with a complex medical condition or disability during the preceding year. Released July 24, 2025, this national survey describes caregivers’ circumstances. It does not identify one intervention that will meet every family’s needs.

Research can also examine a specific kind of support. In the DaSH adult day services study (opens in a new tab), 173 caregivers of people with dementia reported their experiences over eight consecutive days. Service days were associated with fewer care-related stressors and more positive experiences. Those findings concern the service day; they do not prove that a family message, portal, or app produces the same effects.

Together, these sources invite a more precise conversation: what kind of work is this caregiver carrying, and what support could change that experience?

Our recommended starting point is a short, revisable agreement about everyday coordination. Record the family’s preferred contact, the topics they want to hear about, the tasks the organization owns, and how questions receive an answer. Make room for a caregiver to say that an arrangement is no longer workable.

Consider a hypothetical family with two adult children. One lives nearby and helps with transportation; the other lives farther away and can join planning conversations. Sending every update to both people without explaining who should respond could create duplicate work. A clearer arrangement would name the question, identify the person expected to act, and allow them to ask for help.

This example is a design proposition. It is not evidence of reduced caregiver strain, and it is not a description of a current customer.

Caregiver support may involve a conversation, practical education, access to a service, or time away from caregiving. The CMS GUIDE Model (opens in a new tab) combines dementia care coordination with caregiver education and support, including respite for qualifying circumstances. It is a defined care model with its own participation and eligibility rules.

A communication tool can help organize part of that work. It cannot supply a missing service, decide whether a family qualifies for a program, or substitute for a professional response. An organization should explain what its chosen channel can handle and how a family reaches the right person when something needs attention.

For a local review, we would ask whether caregivers know whom to contact, whether information is understandable, and whether requests reach someone able to respond. We would also ask how much extra work the arrangement creates for the caregiver and staff.

Keep findings separate: a reliably delivered update is an operational result; feeling better informed is a reported experience; a change in caregiver strain is another outcome requiring its own measure. The genusConnect Day Center research collection applies this distinction to the service day, family communication, and the software supporting them. Each deserves evidence appropriate to the claim.