Caregiver support landscape for Alzheimer's disease, as of Q2 2026

Scope

This snapshot summarises the structural support available to unpaid family caregivers of people living with Alzheimer's disease, with a primary US focus and brief comparative notes on the UK and EU. It covers what is in place - not what is needed, and not the lived experience of caregiving (which is shaped by far more than the programs listed here).

US - federal programs

CMS GUIDE Model

The Guiding an Improved Dementia Experience (GUIDE) Model is the most consequential federal program in this space at present. Run by the CMS Innovation Center, GUIDE creates a Medicare payment pathway for participating practices to deliver coordinated dementia care that explicitly includes caregiver support - assessment, education, 24/7 helpline, respite care, and care navigation.

GUIDE went live in mid-2024 and has been expanding. Participating-practice geography is uneven and the operational uplift required of practices to participate is non-trivial. For a plain-language overview, see our explainer on the CMS GUIDE Model; for the policy direction, see our Signal on caregiver policy momentum.

Medicare benefit (outside GUIDE)

For Medicare beneficiaries not in a GUIDE-participating practice, the standing benefit for caregiver support is limited. Cognitive assessment visits are reimbursable. Home-health-eligible patients can access defined services. Respite care is generally not a covered Medicare benefit outside hospice.

Older Americans Act - National Family Caregiver Support Program

The NFCSP funds state-level caregiver-support services through the Administration for Community Living. State implementation varies widely. Services typically include information and referral, counselling, training, respite care, and supplemental services. Total funding is small relative to the population served.

Family and Medical Leave Act

FMLA provides up to 12 weeks of unpaid, job-protected leave per year for eligible employees to care for a spouse, child, or parent with a serious health condition. It applies to employers with 50+ employees and excludes substantial parts of the workforce. Paid family leave is not federal.

Tax provisions

The federal tax code includes the Credit for Other Dependents and limited dependent care provisions that may apply in specific caregiver situations. The thresholds and definitions exclude many caregiving arrangements.

US - state programs

Paid Family Leave

A growing number of states (California, New Jersey, New York, Rhode Island, Washington, Massachusetts, Connecticut, Oregon, Colorado, and others) have implemented paid family leave programs that include family caregiving. Eligibility, duration, and wage-replacement levels vary significantly. The state map is changing each year.

Medicaid Home and Community-Based Services

State Medicaid programs operate HCBS waivers that can fund in-home support, adult day services, and (in some states) direct payment to family caregivers. Eligibility is means-tested. Waiting lists in many states are long and waiting times are measured in years for some categories.

Caregiver Tax Credit

A subset of states (notably New York, New Jersey, and others under active legislation) have enacted or are considering caregiver tax credits. Amounts and eligibility are narrow.

US - employer programs

A growing number of large employers offer caregiver-support benefits - backup care, eldercare consultation, EAP-based counselling, and in some cases stipends or paid caregiving leave beyond statutory minimums. Benefit availability is concentrated among large employers and uneven by industry.

US - direct-support organisations

Several national non-profits provide direct caregiver support - helplines, education, support groups, care navigation. Funding for these services is largely philanthropic and grant-supported. Local chapter capacity varies.

United Kingdom

NHS-funded support for dementia caregivers is delivered through local authority adult social care, NHS dementia services, and the UK voluntary sector (Alzheimer's Society and others). The Care Act 2014 establishes carer assessment rights at the local-authority level. Carer's Allowance is a means-tested benefit at modest amounts. Implementation varies by local authority.

European Union

Caregiver-support frameworks are member-state specific. The EU has issued recommendations on long-term care and informal caregivers but does not directly fund services. Key country-level frameworks include Germany's long-term care insurance system, France's APA (allocation personnalisée d'autonomie), and similar national programs in the Nordics, the Netherlands, and Italy.

What this implies

Three observations the structure makes visible.

First, the dollars are concentrated where the burden is partial - short-term respite, navigation, education - and thin where the burden is highest - sustained, hands-on, 24-hour care.

Second, eligibility, duration, and wage-replacement vary enough between programs and jurisdictions that two families with effectively identical clinical situations can experience very different practical support depending on geography and employment.

Third, much of what does exist is invisible to the families who would qualify for it. Information friction is itself a meaningful access constraint.

This snapshot is updated when material changes occur in the federal or major-state caregiver-support landscape.