The Department of Health and Human Services is rewriting the federal roadmap for Alzheimer's disease, and it asked family caregivers to help shape it. HHS published a Request for Information in the Federal Register on July 24, 2026, seeking public comment to update the National Plan to Address Alzheimer's Disease so it guides federal efforts through 2035, according to the Federal Register notice. The comment period has closed, advocacy groups have filed detailed recommendations, and the federal advisory council has already voted on recommendations feeding into the update. What hasn't happened yet is a published plan — so the coverage, cost, and access questions caregivers raised are still open.
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 Is the National Plan and Why Does This Update Matter?
- What Did Caregiver Advocates Ask For?
- Did the Advisory Council Already Make Decisions?
- What's the Status Now, and What Should Caregivers Watch For?
- What Coverage and Cost Support Already Exists While the Plan Is Pending
- Frequently Asked Questions
What Is the National Plan and Why Does This Update Matter?
The National Plan to Address Alzheimer's Disease is the federal government's strategy document for dementia research, care, and services, overseen by the Advisory Council on Alzheimer's Research, Care, and Services. HHS's July 2026 Request for Information asked the public to weigh in on five areas: advancing Alzheimer's and related dementias research, risk-reduction strategies, early detection and diagnostics, enhanced care and services, and gaps in coordination among federal, state, tribal, and community partners, according to ASPE's RFI announcement. The announcement explicitly invited people living with dementia, family caregivers, and care partners to submit comments.
This matters to caregivers because the plan influences which programs get funded and prioritized — things like dementia-capable home care, workforce training, and caregiver respite benefits. The update covers a nine-year window, through 2035, so the choices made now will shape federal dementia policy for the rest of the decade. Comments were due August 15, 2026, through the docket HHS-ASPE-2026-0298 on regulations.gov, according to the ASPE docket page. That window is now closed, but the record of what was submitted shows what caregivers and advocates pushed for.
What Did Caregiver Advocates Ask For?
LeadingAge, which represents nonprofit aging-services and long-term-care providers, filed comments on the August 15, 2026 deadline asking HHS to prioritize financing for dementia-capable services, dedicated funding for dementia-specific workforce training, and integration of family-caregiver supports directly into the direct-service system, according to LeadingAge's comment letter. The letter specifically recommended provider add-on payments tied to dementia caseloads — a financing mechanism meant to make it worthwhile for home care and residential providers to build staff expertise in dementia care rather than treating it as a generic add-on service.
These requests reflect a recurring gap families report: finding paid caregivers or facilities with real dementia training, not just general elder care experience. Whether the final plan adopts anything resembling provider add-on payments will determine whether that gap narrows or stays where it is.
Did the Advisory Council Already Make Decisions?
The federal Advisory Council on Alzheimer's Research, Care, and Services met on August 3, 2026 and voted to adopt subcommittee recommendations that will feed into the 2026-2035 plan update, according to ASPE's advisory council meeting records. That vote followed an earlier session in February 2026 where the council had already accepted written public comment.
A council vote to adopt recommendations is not the same as a finished plan. The recommendations still have to be translated into the actual document HHS publishes, and that step has not happened yet.
What's the Status Now, and What Should Caregivers Watch For?
As of October 19, 2026 — more than two months after the comment window closed — HHS/ASPE had not published a draft or final text of the updated 2026-2035 National Plan, according to ASPE's National Plans to Address Alzheimer's Disease page. That means which coverage, cost, or caregiver-support proposals actually get adopted remains undecided.
Caregivers who want to track this should check that ASPE page periodically rather than assuming a specific proposal — like LeadingAge's provider add-on payments — has been accepted. Nothing filed during the comment period is binding until HHS incorporates it into published text.
- Monitor the ASPE National Plans page for a draft or final release
- Don't assume advocacy recommendations are adopted just because they were filed or discussed
- Watch for a public comment period on any draft HHS eventually releases
What Coverage and Cost Support Already Exists While the Plan Is Pending
Separate from the plan rewrite, two existing Medicare policies already affect what this update might build on. CMS's GUIDE model is a voluntary eight-year Medicare payment model running from July 1, 2024 through June 30, 2032. It covers dementia care-navigation services at no cost to beneficiaries in Original Medicare and funds a yearly respite-care benefit for unpaid family caregivers, capped at $2,563 per patient in performance year 2025, according to CMS's GUIDE model fact sheet. That respite benefit has real limits.
It's restricted to patients enrolled in Original Medicare Parts A and B — not Medicare Advantage, hospice, or PACE — who aren't living in a long-term nursing home and who have an identified unpaid caregiver, according to CMS's GUIDE Model Overview Fact Sheet. That excludes a large share of Medicare Advantage enrollees from this particular caregiver support, regardless of what the National Plan eventually says. On the drug-cost side, Medicare Part B requires a 20% coinsurance after the deductible for FDA-approved amyloid-targeting Alzheimer's antibody treatments. Beneficiaries in Original Medicare have no annual out-of-pocket cap on that coinsurance unless they also carry supplemental Medigap coverage, according to Becker's Payer Issues reporting on CMS coverage policy. That cost exposure is part of the backdrop advocacy groups cited when pushing HHS to prioritize financing reforms in the updated plan.
Frequently Asked Questions
Can I still submit a comment on the National Plan update?
The formal comment period closed August 15, 2026, and HHS had not published a draft as of October 19, 2026, according to ASPE's National Plans page. A new comment opportunity typically opens when a draft is released.
Does the GUIDE model's respite benefit apply to Medicare Advantage enrollees?
No. The benefit is limited to patients in Original Medicare Parts A and B who aren't on Medicare Advantage, hospice, or PACE, according to CMS's GUIDE Model Overview Fact Sheet.
Is there a cap on what I'd pay out-of-pocket for an Alzheimer's antibody drug under Medicare?
Not under Original Medicare alone. The 20% Part B coinsurance has no annual cap unless you also have Medigap supplemental coverage, according to Becker's Payer Issues.
You Might Also Like
- The HHS National Alzheimer’s Plan Update for 2026-2035: Coverage, Cost, and Access Questions for Family Caregivers
- Subjective Cognitive Decline Data for Public Health Action in 2026: Local Action Questions for Family Caregivers
- Serious Illness and End-of-Life Dementia Research Priorities in 2026: Questions Family Caregivers Can Ask Local Care Programs
