HCBS waitlists may grow for dementia caregivers because more families need help while states can cap slots and federal cuts squeeze optional services. HCBS means Medicaid home and community-based services, such as personal care, respite, and help at home instead of a nursing home. The Alzheimer's Association reported 7.2 million Americans age 65 and older had Alzheimer's dementia in 2025, exceeding 7 million for the first time, in its 2025 report on early diagnosis and treatment. It also counted nearly 12 million unpaid dementia caregivers providing 19.2 billion hours of care valued at $413.4 billion, with major health and work impacts.
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 is demand rising fast?
- Why can states limit help?
- How long are waits now?
- What can families do while they wait?
Why is demand rising fast?
Dementia care at home depends heavily on family members. The Alzheimer's Association counted nearly 12 million unpaid dementia caregivers in 2025. They provided 19.2 billion hours of care valued at $413.4 billion.
That workload carries health and job costs. Caregivers face sleep loss, stress, missed work, and lost income. When family support wears thin, more families turn to paid home help.
Why can states limit help?
Nearly all Medicaid HCBS is optional for states. According to KFF, states provide it largely through 1915(c) waivers that let them cap enrollment, spending, and service slots, as explained in its 2025 overview of Medicaid home care. That structure makes HCBS vulnerable in a budget squeeze. KFF cited Congressional Budget Office estimates that the reconciliation law signed July 4, 2025 cuts federal Medicaid spending by about $911 billion over 10 years.
States facing less federal money may freeze slots, tighten limits, or delay new waivers. Workforce shortages add pressure. PHI projected 8.9 million total direct-care job openings from 2022 to 2032, with median annual earnings of only $25,015. Low pay fuels turnover, so approved slots can stay unfilled.
How long are waits now?
KFF counted more than 600,000 people on Medicaid HCBS waiting or interest lists across 41 states in 2025, up 14% from 2024, in its analysis of waitlists from 2016 to 2025. New waiver enrollees waited an average of about 32 months. Averages run longer for intellectual and developmental disability and autism-specific waivers. These numbers signal multi-year delays, not weeks.
For dementia, a two- or three-year wait can span the shift from mild help to full daily care. Families should plan as if the line will move slowly. Comparisons across states remain rough. According to the Commonwealth Fund, some lists include unscreened people and methods differ by state. Standardized annual reporting required by CMS starts in July 2027.
What can families do while they wait?
Apply for a waiver early, even if help is not urgent yet. Ask the Medicaid agency which waiver fits dementia, what papers prove need, and how to stay active on the list.
Keep copies and report changes in health or housing fast. Use stopgap supports to protect the caregiver:.
- Ask about respite care, adult day programs, and home aide hours
- Join a dementia caregiver support group in person or online
- Call the Alzheimer's Association's 24/7 helpline for care planning and crisis help, as noted in its November 2025 caregiver announcement
