Now What Your parent was just diagnosed with dementia: a first-30-days checklist
Short answer: in the first weeks, write down what the doctor said and your questions, organize medications, contacts and appointments, find out which legal and financial documents already exist, and start planning conversations while your parent can take part. The National Institute on Aging suggests starting those discussions early and getting permission in advance to talk to their doctor or lawyer. For support, call the Alzheimer's Association 24/7 Helpline at 800.272.3900.
A dementia diagnosis can bring relief at finally having an explanation, and grief and fear about what comes next, often all in the same week. You don't have to plan everything at once. These are the things families most often wish they'd organized early.
This is an organizing checklist, not medical, legal or financial advice. Treatment and care decisions belong to your parent and their doctors; legal and financial decisions to your parent with an elder law attorney or financial professional. Planning tips are from the National Institute on Aging (NIA) at alzheimers.gov.
Week 1: understand the diagnosis
- Write down what the doctor said: the type of dementia if known, what's expected next, and any changes to medications.
- List your questions for the follow-up visit: what to watch for, what changes to report, which specialists or tests come next, and who to call between visits.
- Update the medication list with anything new, copied exactly from the labels.
- Call the Alzheimer's Association 24/7 Helpline (800.272.3900) or the NIA's ADEAR Center (800-438-4380) for information about the diagnosis and local resources.
Weeks 2 to 3: organize the information
- Set up one binder or shared place for medications, care contacts, appointments and insurance. The free binder below has pages for each.
- Get permission in advance to talk with your parent's doctor or lawyer. The NIA notes that without consent you may not be able to get needed information about care, bills or insurance claims. Ask the doctor's office what form they use.
- Find out which documents already exist and where they are kept: power of attorney, advance directive, will, insurance policies. Just make the list; questions about what's needed go to an elder law attorney.
- Help your parent keep a calendar or notebook for appointments and to-do lists, which the NIA suggests for everyday life with dementia.
Week 4: plan together
- Start the planning conversations early, so your parent can be part of the decisions, as the NIA recommends.
- Talk about their wishes for care, where they want to live, and who they want involved. Write their answers down.
- Consider legal and financial matters with the right professionals, and learn about in-home care and long-term care options for later.
- Agree on family roles: who goes to appointments, who handles bills, who checks in. Write it down so it's shared.
Who to tell
Whether and when to tell people is your parent's call where possible. Families often start with close family, then the people who will notice changes or help day to day: a trusted neighbor, close friends, and other doctors your parent sees, so their records are up to date.
Where to get help
- Alzheimer's Association 24/7 Helpline: 800.272.3900, free, any time, with interpreters available.
- NIA's ADEAR Center: 800-438-4380 or adear@nia.nih.gov.
- Local services and caregiver support: your Area Agency on Aging, through eldercare.acl.gov or 1-800-677-1116.
Next: organizing dementia care at home and how to talk to a parent with dementia.
Common questions
What should I do after my parent is diagnosed with dementia?
Write down what the doctor said and your questions, organize medications, contacts and appointments in one place, find out which legal and financial documents already exist, and start planning conversations while your parent can take part. The Alzheimer's Association 24/7 Helpline at 800.272.3900 can help with information and local resources.
What paperwork should we organize after a dementia diagnosis?
Make a list of what already exists and where it is kept, such as a power of attorney, advance directive, will and insurance policies. The National Institute on Aging also suggests getting permission in advance to talk to your parent's doctor or lawyer. Questions about what documents are needed go to an elder law attorney.
When should we start planning after a dementia diagnosis?
The National Institute on Aging suggests starting discussions early so the person with dementia can be involved in the decisions, including legal and financial matters and options for in-home and long-term care.
What questions should I ask the doctor after a dementia diagnosis?
Ask what type of dementia it is if known, what to expect next, which changes to watch for and report, whether medications are changing, which specialists or tests come next, and who to call with questions between visits.
Where can families get help after a dementia diagnosis?
The Alzheimer's Association 24/7 Helpline at 800.272.3900, the National Institute on Aging's ADEAR Center at 800-438-4380, and your local Area Agency on Aging through the Eldercare Locator at eldercare.acl.gov or 1-800-677-1116.