Yes, HCBS waitlists are likely to stay long and tighten further for dementia caregivers who need home aides. Home and Community-Based Services are state Medicaid programs that pay for home aides and other care outside nursing homes, and demand already outruns supply.
KFF found more than 600,000 people waiting nationally in 2025, with an average wait of about 32 months, across 41 states with waiting or interest lists, according to KFF's waiting-list analysis. Every responding state also reported home-care worker shortages. That combination hits dementia families hard because daily supervision needs are high and private help is costly.
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 the line is already so long
- Why dementia caregivers feel it first
- Will hiring catch up soon
- What to do while you wait
- Frequently Asked Questions
Why the line is already so long
Medicaid home-care programs have limited slots, staff, and funds. When a slot opens, the next eligible person moves up, but new applicants keep joining. Long average waits reflect that steady backlog.
Staffing is a central choke point. KFF found every responding state reported shortages of home-care workers, most often direct-support professionals, nursing staff, and personal-care attendants, according to KFF's 2025 home-care payment brief. Many states also saw permanent provider closures in the prior year. A waiver slot does not guarantee an available aide.
Why dementia caregivers feel it first
Dementia care often needs many hours of hands-on help, supervision, meals, bathing, and safety checks. Nearly 12 million unpaid caregivers provided about 19.2 billion hours of dementia care in 2024, valued at about $413.4 billion, while total U.S. dementia care costs were projected at $384 billion for 2025, the Alzheimer's Association reported in its November caregiver announcement.
Those hours show how much care already falls on families. Strain is widespread. Columbia University's May 2025 national scorecard rated unpaid family caregiving as critical or high risk in 24 states, with dementia care driving 39.7% of the total $873.5 billion caregiving valuation. When a family caregiver gets sick, works full time, or faces burnout, a missing home aide can force missed work, emergency room visits, or facility placement.
Will hiring catch up soon
Federal projections expect strong job growth for aides. The Bureau of Labor Statistics projects home health and personal-care aide employment will grow 18% from 2025 to 2035, adding 847,300 jobs from 4.68 million to 5.52 million, according to the BLS job-growth table. That growth could ease some gaps over time.
Current provider reports remain bleak. ANCOR's 2025 survey of 469 community disability providers found 88% faced moderate or severe staffing shortages and 62% turned away new referrals for lack of staff. Training pipelines, wages, turnover, and local shortages shape whether a new job turns into an aide at your door.
What to do while you wait
Ask your state Medicaid office how its list works and what screening it requires. KFF cautions that waitlists are an incomplete measure of unmet need and are not necessarily comparable across states or over time because screening and eligibility practices differ. Keep copies of applications, renewals, assessments, and call notes.
Use the wait to line up backup support: If you win a slot, move fast to find an aide because some areas have few active providers. Call several agencies, ask about dementia experience, shift coverage, backup staff, and start dates. Keep family respite plans in place until aide hours begin.
- Ask the caseworker what services can start before a waiver slot opens
- Ask agencies directly whether they staff dementia cases in your ZIP code
- Ask the doctor or hospital social worker for caregiver training, respite, and adult-day referrals
- Recheck your contact information after every move or phone change
Frequently Asked Questions
Does getting off the HCBS waitlist mean a home aide starts right away?
Not always. Families may still face agency closures, staffing gaps, or no aide available nearby, so keep backup care until shifts begin.
Why do wait times differ so much by state?
States screen, define eligibility, and count lists differently, so a list in one state may not mean the same thing as a list in another.
