HCBS cuts threaten Alzheimer's home care because Caring Across Generations says Medicaid funds nearly three-quarters of home and community-based services (HCBS). Almost all that help is optional, so states facing cuts can cap enrollment or cut it first, according to Justice in Aging's HCBS primer.
The Alzheimer's Association estimates 7.2 million Americans age 65 and older live with Alzheimer's dementia. It estimates total 2025 health, long-term-care and hospice payments at $384 billion, excluding unpaid care. Most daily support still comes from relatives at home.
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
- What help keeps dementia patients at home?
- Why do federal cuts fall on home care first?
- How many families already wait for help?
- What should families watch for now?
What help keeps dementia patients at home?
For dementia, home care often means personal care, meal help, supervision and respite that let a person stay home. Caring Across Generations says HCBS enables 8.4 million older adults and people with disabilities to live at home rather than institutions.
The Alzheimer's Association reports nearly 12 million family members provided more than 19 billion hours of unpaid dementia care in 2024. The association values that care at $413.4 billion. The association puts lifetime dementia care cost at $405,362 per person, with 70 percent borne by families.
Why do federal cuts fall on home care first?
Justice in Aging identifies the Budget Reconciliation Act of 2025 as H.R. 1, Public Law 119-21, signed July 4, 2025. The group says the law cut federal Medicaid funding by about $1 trillion.
Justice in Aging notes CBO scoring near $911-$990 billion over 10 years in its analysis of the Medicaid vote. States must cover nursing-facility care, but nearly all Medicaid HCBS is optional. That lets states facing cuts cap enrollment or cut HCBS first. Justice in Aging's HCBS primer notes every state cut HCBS after the Great Recession.
How many families already wait for help?
KFF found 692,000 people on HCBS waiting or interest lists across 38 states in 2023, averaging about three years. KFF also reports more than 600,000 on lists in 2025, showing large unmet need before new cuts, in its waiting-list update.
KFF warns these lists both overstate and understate need. The lists are not comparable across states or years, so they cannot show exactly how many Alzheimer's families will lose care.
What should families watch for now?
Justice in Aging reports that less than a year after H.R. 1, several states moved to cut home help.
Colorado, Idaho, Missouri, Nebraska and North Carolina proposed or enacted HCBS cuts, terminations or tighter eligibility affecting dementia home care. Act early when hours drop or a review letter arrives. Keep copies of notices, write down worker names and dates, and request the decision in writing.
- read every Medicaid or plan letter about caps, hours, reviews and appeal dates
- ask the care coordinator what is waiver help versus required coverage
- keep a one-page list of diagnoses, drugs, falls and supervision needs for reviews
