Caregiving Guide: Where to Start

A step-by-step starting point for new dementia caregivers—learning, planning, safety, building a team, and caring for yourself.

Last reviewed: October 2026

If someone you love has just been diagnosed with dementia, you may feel overwhelmed. More than 11 million Americans provide unpaid care for a person with Alzheimer's or another dementia, according to the Alzheimer's Association. You don't have to figure it all out at once. This guide lays out the first steps, roughly in order.

1. Learn about the condition

Understanding the type of dementia and what to expect makes everything easier. Ask the doctor what type it is, what stage, and what changes to expect. Read our articles on What Is Dementia?, Alzheimer's Disease and Stages of Dementia. Remember: changes in behavior are caused by the disease, not by the person choosing to be difficult.

2. Talk together while you can

In the early stage, the person can usually take part in decisions. Ask what matters most to them: where they want to live, what kind of care they'd accept, how they want to spend their time, their wishes for end-of-life care. These conversations are hard but are a gift later.

3. Get legal and financial documents in place

Do this early, while the person can still understand and sign:

Durable power of attorney for finances – names someone to manage money.
Health care power of attorney / health care proxy – names someone to make medical decisions.
Advance directive / living will – records wishes about medical treatment.
Will and review of beneficiaries.
HIPAA release so doctors can talk to you.

An elder law attorney can help, and many communities offer free or low-cost legal aid for older adults. Gather important papers: insurance, bank accounts, pensions, deeds, passwords. Watch for scams and consider setting up account alerts.

4. Look at the money

Dementia care can be expensive. Find out what's covered: Medicare covers doctor visits, hospital care, some home health and hospice, but not long-term custodial care. Medicaid covers long-term care for people with limited income and assets. Also check long-term care insurance, veterans benefits, and local programs. Medicare covers a cognitive assessment and care planning visit—ask the doctor for it. See also Medicare's GUIDE dementia care program if a participating provider is near you.

5. Make home safe

Remove trip hazards, add grab bars and good lighting, and install night lights.
Lock up medicines, alcohol, firearms, cleaning products and tools.
Consider stove shut-off devices and lowering water heater temperature.
Plan for wandering: an ID bracelet, a recent photo, door alarms, and a GPS device if needed.
Talk with the doctor about driving—it usually needs to stop at some point.

6. Build a routine

A predictable daily rhythm reduces anxiety and confusion. Plan demanding activities like bathing for the person's best time of day. Keep activities meaningful and simple. See Non-Drug Treatments for Dementia.

7. Learn new ways to communicate

As dementia progresses, the way you communicate needs to change: simple sentences, one question at a time, patience, and responding to feelings rather than facts. See Communicating with Someone with Dementia.

8. Build your care team

Nobody can do this alone. Make a list of who could help—family, friends, neighbors, faith community—and what each could do (meals, rides, visits, bills, a weekly break). Professional and community services include:

Area Agencies on Aging – find them through the Eldercare Locator (800-677-1116)
Adult day programs
In-home care – companions, home health aides
Respite care – short-term breaks
Support groups – in person or online
Care managers or social workers who can coordinate services

9. Care for yourself

Caregivers have higher rates of stress, depression and health problems. Taking care of yourself is not selfish; it's essential for both of you. Keep your own medical appointments, sleep, move, and stay connected to friends. Accept help when it's offered. See Caregiver Stress and Burnout.

10. Plan for the future

Over time, care needs grow. Learn about options early—more in-home help, assisted living, memory care, nursing homes, and hospice—so you're not making decisions in a crisis. Visit places before you need them.

Help is a phone call away

Alzheimer's Association 24/7 Helpline: 800-272-3900
NIA ADEAR Center: 800-438-4380
Eldercare Locator: 800-677-1116

Caregiving is one of the hardest and most meaningful things people do. Take it one day at a time.

Free printable: 10 Warning Signs of Dementia: Checklist (large-print PDF) · Questions to Ask the Doctor (large-print PDF)

Sources

Not medical advice. This article is general information, not a diagnosis or treatment plan for any individual. Talk with a doctor about your situation.

Ask a question

Have a question about memory, Alzheimer's, or caregiving? Email us at:

[email protected]

Open in my email app · Write in Gmail (opens in a new tab)

We may answer common questions in future updates (we won't share your name). We can't give personal medical advice; for urgent help call the Alzheimer's Association Helpline at 800-272-3900.

Memory Digest