The 2026 NIA Dementia Care and Caregiving Research Summit flagged a strengths-based approach to care as one of its central themes, meaning interventions should build on what people with dementia and their families can still do rather than cataloging only their losses. For adult children already juggling jobs, kids, and a parent's diagnosis, the summit's report points to specific, named gaps in how services find and support them. The National Institute on Aging (NIA) held the summit virtually March 17–19, 2026, then released a summary report finalizing research gaps and opportunities across five session topics. The report doesn't just describe where research needs to go; it documents, in attendees' own discussion, where the current service system fails the people doing the caregiving.
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Table of Contents
- What does "strengths-based" mean in this report?
- Why are adult children specifically named as a research priority?
- Why do health systems have trouble identifying family caregivers?
- What does caregiving actually cost, and who absorbs it?
- What about dementias other than Alzheimer's?
What does "strengths-based" mean in this report?
A strengths-based approach starts from what a person with dementia and their family can still do, not only what the disease has taken away. The summit's moderated Q&A sessions recorded this as a recurring theme attendees returned to when discussing how care interventions should be designed, according to the 2026 Summit Report. In practice, that shapes what an intervention measures as success.
A program built around deficits tracks decline and crisis points. A program built around strengths tracks preserved abilities, routines that still work, and relationships that still function, then designs support around protecting those. The report ties this directly to another cross-cutting theme: co-designing interventions with care providers and community organizations rather than handing down a fixed protocol. Both ideas push toward the same practical shift — services built with input from the people using them, not just imposed on them, per the Summit Report.
Why are adult children specifically named as a research priority?
One named research priority in the report's economic session asks whether family members in the next one to two generations expect to become caregivers, and how they're preparing — financially and otherwise. That question is aimed squarely at adult children who haven't yet stepped into a caregiving role but likely will, as outlined in the Summit Report. The question matters because the caregiving burden is growing, not holding steady.
Survey data cited in the report show mean weekly caregiving hours rose from 21 hours in 2011 to 31 hours in 2022 — nearly 50 percent more unpaid time, the Summit Report notes. An adult child weighing whether to take on a parent's care today is looking at a heavier average commitment than the same decision a decade ago. The report also flags unresolved gaps in measuring that unpaid labor and its aftermath: the long-term financial impact on caregivers after the person with dementia dies, and the effects of relocating, changing jobs, or cutting work hours to provide care, per the Summit Report. None of those costs show up in a diagnosis conversation, which is part of why the report treats them as open research questions rather than settled facts.
Why do health systems have trouble identifying family caregivers?
A specific service gap the report names: health records are structured around the patient, not the caregiver. That makes it difficult for clinical systems to even identify who is providing unpaid care for a person with dementia, let alone connect that person to support, the Summit Report documents. Practically, this means an adult child can sit in a parent's medical appointments for years without ever being formally recorded as the caregiver in any system that might flag them for services.
NIA's IMPACT Collaboratory is working on this problem, per the same report — but the fix isn't deployed broadly yet, so the gap is current, not historical. For a reader managing a parent's care today, this explains a common frustration: no one proactively calls to offer respite care, support groups, or financial counseling, because no record exists that identifies the caregiver as someone needing those services. Asking a parent's care team directly whether caregiver-support programs exist, rather than waiting to be referred, is one way around a gap the records themselves don't register.
What does caregiving actually cost, and who absorbs it?
NIA-supported cost research cited in the report puts dementia's total U.S. economic impact at $781 billion annually, including $232 billion in direct medical and long-term care costs, according to the Summit Report. The direct-cost figure covers formal medical and care spending; it doesn't include the unpaid labor adult children and other family members provide.
That unpaid side is where the report's measurement gaps matter most for individual families. Session 1 of the summit included caregiver testimony — one account describes a woman who shifted to part-time work specifically to care for parents with dementia, an illustration the report connects to financial strain from inadequate family caregiver support services, as recorded in the Summit Report. That kind of work reduction is exactly the effect the report says isn't yet well measured at a population level, even though it's documented in individual testimony. A reader facing a similar choice — cutting hours, relocating, or leaving a job to provide care — is making a decision the research base hasn't yet quantified the full cost of, which is itself a reason to weigh it carefully rather than assume support services will catch the gap.
What about dementias other than Alzheimer's?
The summit's cross-cutting themes also name the added complexity of caring for non-Alzheimer's dementias as an unmet need in current service delivery, per the Summit Report. Services and information built around the more commonly discussed Alzheimer's disease don't automatically transfer to other forms of dementia, which can carry different symptom patterns and care demands.
For an adult child caring for a parent with a less-discussed dementia type, this gap means fewer tailored resources exist, and generic dementia-care advice may not fit the specific challenges involved. It's a reason to ask a parent's neurologist or care team directly what's different about managing that particular diagnosis, rather than assuming standard caregiver resources cover it.
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