What help is there if I'm caring for someone with dementia?

What this means

• Respite means someone else takes over for a few hours or a few days so you can rest. It is the single most useful thing most dementia caregivers are not using.
• GUIDE is a Medicare program where a dementia care team gives you one phone number to call, a care navigator, and a respite budget. Ask the neurologist or primary care office whether they participate.
• Adult day programs run through Area Agencies on Aging give the person with dementia a full day of supervised activity, which is often cheaper and better than in-home hours.

What to do first

1. Call the Eldercare Locator at 1-800-677-1116 and ask for the caregiver support program and respite in your county.
2. Ask the treating doctor's office whether they are in the Medicare GUIDE dementia model, and ask to be referred if they are.
3. Ask about an adult day program and about a Medicaid home and community based services waiver if income is limited.
4. Put legal documents in place early — power of attorney and health care proxy — while the person can still sign. Free legal help for older adults can do this.

What you'll need

• The diagnosis and the treating doctor's name
• Medicare and Medicaid numbers for the person you care for
• A written list of the tasks you do each day and the hours they take
• Any existing power of attorney or health care proxy

Where to go

• Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov/Public/Index.aspx for respite and adult day programs.
• Medicare GUIDE model: https://www.cms.gov/priorities/innovation/innovation-models/guide — ask the doctor's office directly whether they take part.
• Free legal help for older adults: https://acl.gov/programs/protecting-rights-and-preventing-abuse/legal-help