Researchers heading into 2026 are focused on closing three gaps in home-based dementia care: a lack of strong evidence for which home interventions actually work, chronic staffing shortages that limit paid help, and financing models that haven't caught up to the scale of family caregiving. For adult children managing a parent's care from home, these gaps translate into real, practical limits on what support is available and how reliable it is. The National Institute on Aging convened its 2026 Dementia Care and Caregiving Research Summit on March 17-19, bringing together care partners, researchers, and service providers specifically to name what remains unmet in this field, including a dedicated session on care-coordination strategies across systems and states.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- Why Adult Children Carry Most of This Burden
- What the Research Still Doesn't Know About Home Care
- Why Paid Help Is Hard to Find and Keep
- The Emotional and Financial Weight on Families
- What Adult Children Can Do With This Information
Why Adult Children Carry Most of This Burden
Nearly 13 million Americans provided unpaid care to a family member or friend with Alzheimer's or another dementia, work valued at $446.3 billion, according to the Alzheimer's Association's 2026 Facts and Figures report. That labor falls disproportionately on daughters and other family members rather than on paid staff. Over one-third of dementia caregivers are daughters, and about two-thirds overall are women, the same report found.
Roughly 30% are 65 or older themselves, and about a quarter are "sandwich generation" caregivers raising children while simultaneously caring for a parent with dementia. Two-thirds of dementia caregivers live with the person they care for in the community, not in a facility, and 41% have household incomes of $50,000 or less. This means most dementia caregiving already happens inside family homes, often among households with limited financial cushion to pay for outside help.
What the Research Still Doesn't Know About Home Care
The National Academies' 2021 report, "Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers," found that strong evidence for home-based dementia care interventions remains limited. That finding is still cited as the baseline unmet research need going into 2026, according to the National Academies' report.
A specific problem the report identified is that existing evidence doesn't reflect the experiences of diverse populations. That means families from different cultural, racial, or economic backgrounds may be following guidance built on research that didn't study people like them. This evidence gap is part of why the NIA summit included a session specifically on care models and coordination strategies — the field needs data on what actually helps a family manage dementia at home, not just that families are doing it.
Why Paid Help Is Hard to Find and Keep
Even when a family can afford outside help, finding it is increasingly difficult. According to the Administration for Community Living's 2025 caregiver fact sheet, 88% of direct-care provider organizations reported moderate or severe staffing challenges, and 62% turned away new referrals because they didn't have enough staff. Even families who do secure a home-care aide face instability.
Home-care worker turnover reached nearly 75% in 2024, the same ACL fact sheet found. That means a family that successfully hires an aide has close to even odds of losing that person and having to restart the search within roughly a year. For adult children, this translates into a specific planning reality: a home-care placement is rarely a one-time task. It's an ongoing search that may need to be repeated, often while managing a parent's worsening symptoms at the same time.
The Emotional and Financial Weight on Families
Fifty-nine percent of dementia caregivers report high to very high emotional stress, according to the Alzheimer's Association's 2026 figures. That statistic signals a limit on how much unpaid family labor can reasonably substitute for formal home-based services without additional support in place. The scale of the financial burden is also rising. The Alzheimer's Association's 2026 statesheets put the total cost of caring for people with Alzheimer's and other dementias at $409 billion in 2026, a figure projected to approach $1 trillion by mid-century.
That trajectory underscores how far current financing falls short of what home- and community-based alternatives to institutional care would require. Sandwich generation caregivers face a particular version of this strain. AARP's Caregiving in the US report found that nearly 17 million family caregivers — 29% of all adult caregivers — are simultaneously raising children and caring for an adult with a complex medical condition. According to AARP's Public Policy Institute, these caregivers aren't logging more hours than others; they're compressing more care tasks into the same amount of time.
What Adult Children Can Do With This Information
None of these gaps are things one family can close alone, but understanding them changes how to plan:.
- Expect to re-search for paid help periodically, given the nearly 75% annual turnover rate among home-care workers — build a backup plan rather than assuming one aide placement will last.
- Don't assume a provider has openings. With 62% of organizations turning away referrals, call multiple agencies early rather than waiting until a crisis forces the search.
- Watch your own stress level as a caregiving variable, not just your parent's symptoms — 59% of dementia caregivers report high to very high emotional stress, and that level of strain affects decision-making and health over time.
- If you're also raising children while caregiving, recognize that the strain comes from task density, not just hours, per AARP's sandwich-generation findings — look for ways to consolidate or delegate tasks rather than just freeing up time blocks.
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