Referral Pathways
Where to Send Them
You've screened the caregiver. You've identified elevated burden, depression risk, or crisis-level strain. Now what? The referral landscape for dementia caregivers is fragmented, poorly indexed, and riddled with gaps. This page maps what exists.
Referral Pathways by Need
| Need | Referral Target | Access |
|---|---|---|
| General caregiver support & information | Alzheimer’s Association 24/7 Helpline (1-800-272-3900), local Area Agency on Aging (AAA), Eldercare Locator (1-800-677-1116) | Free, nationwide. Helpline available 24/7 in 200+ languages. AAAs provide local navigation. Eldercare Locator connects to local services. |
| Respite care | AAA, ARCH National Respite Locator, state HCBS waiver programs, local adult day centers, faith-based respite programs | Availability and cost vary by state and locality. NFCSP (Title III-E) funds respite through AAAs. Medicaid HCBS waivers may cover respite in some states. Significant waitlists in many areas. |
| Care management / coordination | Aging Life Care Association (private geriatric care managers), AAA care coordination programs, CMS GUIDE Model participants, PACE programs | Private geriatric care managers: $150–$250/hour, not typically covered by insurance. AAA programs: free or sliding scale. GUIDE and PACE: covered for enrolled Medicare beneficiaries. |
| Structured evidence-based intervention | REACH II (available through VA and some community organizations), NYUCI (limited academic sites), Savvy Caregiver (AAAs, community), Powerful Tools (AAAs, community), TCARE (Washington State, expanding) | Extremely limited geographic availability for REACH II and NYUCI. Savvy Caregiver and Powerful Tools more widely available through AAAs. No national directory of evidence-based caregiver intervention providers. |
| Legal planning (advance directives, guardianship, estate) | National Academy of Elder Law Attorneys (NAELA), state bar elder law sections, legal aid organizations, Alzheimer’s Association legal consultation | Private elder law attorneys: $250–$500+/hour. Legal aid: free for income-qualifying individuals, limited availability. Alzheimer’s Association offers free care consultations that include legal guidance. |
| Financial counseling & benefits navigation | State Health Insurance Assistance Program (SHIP), Benefits CheckUp (NCOA), Social Security Administration, Medicaid eligibility offices, VA Aid & Attendance | SHIP and Benefits CheckUp are free. Financial advisors specializing in elder care: fee varies. Medicaid planning typically requires elder law attorney. |
| Crisis intervention | 988 Suicide & Crisis Lifeline, 911, hospital emergency departments, mobile crisis teams (where available), Alzheimer’s Association 24/7 Helpline | Immediate. 988 is available 24/7 for mental health crises. Caregiver-specific crisis protocols are rare; most crisis services are not designed for caregiving-related distress. |
| VA benefits for veteran care recipients | VA Caregiver Support Line (1-855-260-3274), VA Program of Comprehensive Assistance for Family Caregivers (PCAFC), VA REACH-VA program, VA Aid & Attendance | PCAFC provides stipend, training, respite, and health insurance for eligible caregivers of post-9/11 veterans. Expansion to all eras of veterans underway. REACH-VA available at all VA medical centers. |
The Referral Gap
Knowing where to refer is necessary but insufficient. The infrastructure itself is broken. These numbers reveal why referrals often lead nowhere.
64–79%
No professional support
The majority of dementia caregivers use no professional support services at all. Barriers include awareness, access, cost, stigma, and the belief that asking for help means failing.
Brodaty et al.; Alzheimer’s Association, 202415%
Minority caregivers in non-metro areas with access
Only 15% of minority caregivers in non-metropolitan areas have access to any dementia-specific support services. The referral infrastructure simply does not exist for large portions of the population.
NAC/AARP, 20200
National directories of evidence-based programs
There is no national directory that allows a clinician to look up which evidence-based caregiver interventions (REACH II, NYUCI, STAR-C, etc.) are available in a specific zip code.
Proxi analysis, 2024"The referral problem is not just a list problem. It is a structural problem. The services themselves are underfunded, unevenly distributed, and disconnected from the clinical workflows that could identify caregivers early enough to make a difference."
What Proxi is building
Part of our work is building the connective infrastructure between clinical identification and community-level support. A clinician who screens a caregiver at ZBI-22 = 42 should be able to generate a referral that routes to the right local resource — respite, structured intervention, legal planning, crisis support — without manual research, phone trees, or guesswork.
If you are a clinician who regularly makes these referrals and knows the gaps in your region, we want to hear from you.
Help us map the referral landscape
We are building a clinician-informed referral infrastructure. Your regional knowledge is essential.