The NIA 2026 Dementia Care and Caregiving Summit report gives working caregivers questions to ask programs about coordination, respite, scheduling, and proven support. A Dementia Care Program here means a local service that coordinates dementia care and supports caregivers, not only treats the patient. The National Institute on Aging held the summit virtually March 17-19, 2026 to review progress and set priorities, according to the NIA IMPACT Collaboratory. The follow-up summary lists research gaps rather than a single treatment, according to Community Care Corps.
According to AARP and the National Alliance for Caregiving, about 63 million U.S. adults provide family care. About seven in ten working-age caregivers hold paid jobs, according to AARP and the National Alliance for Caregiving in the Caregiving in the U.S. 2025 report.
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
- Do you coordinate care and offer help after hours?
- What respite can I use while I work?
- Which caregiver program fits my schedule and has evidence?
- Where do I find local help fast?
Do you coordinate care and offer help after hours?
Ask who will coordinate visits, drugs, and referrals through one contact. Ask who acts as navigator and how you reach help at night or on weekends. CMS launched the eight-year GUIDE Model on July 1, 2024 with 390 organizations, according to CMS in its GUIDE announcement.
Those groups build Dementia Care Programs. Participants offer care coordination, a navigator, 24/7 access, and caregiver education plus respite. Ask how the program handles work disruptions and limited benefits. Ask for written hours, backup contacts, and a plan for missed appointments.
- Do you assign a navigator for the family?
- How do I get help at night, on weekends, or during work?
- How will you share updates when I cannot attend visits?
What respite can I use while I work?
Respite means another trained person stays with your family member while you work, rest, or handle errands. Ask if the local program takes part in GUIDE and what respite it covers. CMS reimburses GUIDE participants up to $2,500 per eligible patient each year for in-home, adult-day, or facility respite for qualifying caregivers, according to CMS in its GUIDE model page. Ask whether your situation meets those terms.
Ask what forms, approvals, and wait times apply. Ask which types fit a job schedule. In-home help can cover odd hours. Adult-day or facility stays can cover shifts, travel, or training days.
Which caregiver program fits my schedule and has evidence?
Summit priorities include study of economic and quality-of-life effects and rigorous, scalable help delivered through community groups and real settings, according to Community Care Corps. For workers, that means asking for options tested with families like yours and offered at usable times. Best Programs for Caregiving is a free national directory of nearly 50 evidence-based dementia caregiver programs with zip-code lookup, according to the Alzheimer's Association in 2026 in its partnership announcement.
The directory was expanded by Benjamin Rose, Family Caregiver Alliance, and the Alzheimer's Association. Ask the local agency which listed program it offers and whether sessions run by phone, online, evening, or weekend. Ask what the program teaches and what it expects. Ask about length, cost, language, homework, and whether an employed family member can join remotely.
Where do I find local help fast?
Start with your Area Agency on Aging. The Eldercare Locator connects older adults and caregivers to those agencies for meals, home care, transport, caregiver training, and respite at 800-677-1116 and online, according to the Administration for Community Living. Have your zip code, diagnosis, and work hours ready.
The ARCH National Respite Network offers a free National Respite Locator plus state coalition contacts and guidance on choosing and paying for a local provider, according to ARCH. Use it to compare in-home aides, adult-day sites, and short facility stays. Call 800-677-1116 with your zip code and work hours ready.
- Search by zip code for respite and caregiver training
- Call the listed agency and ask about GUIDE status and respite funds
- Ask for intake steps, wait list, cost, and backup if a worker cancels
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