Mom was just diagnosed with dementia. What do I do first?
Lifelines
The first week after a dementia diagnosis, in order: sit with the news, call the Helpline once, take the next appointment with one written question, tell the siblings, leave the house as a house, then call the local numbers.
Published 11 September 2026 by the Mom Wanders desk. Each number and named program is cited in the sentence that uses it. Nothing here is medical advice.
If you typed "mom just diagnosed with dementia what do I do first" this afternoon, you are not late. You are in the first week. The first week is a sequence, not a pile. Sit with the news. Call the Helpline once. Take the next appointment with one written question. Tell the siblings. Leave the house as a house. Then call the local numbers. The running list of papers, money and hardware lives on the family checklist page. This page is the order for the days right after the words landed.
Sit with the news, then call the Helpline once
The National Institute on Aging says dementia affects millions of people and is more common with age: about one-third of people age 85 or older may have some form of dementia. The same page says it is not a normal part of aging. Those two facts can sit next to each other without you having to reconcile them tonight.
You do not have to build a plan in the clinic parking lot. Eat something. Tell one person who is kind. Then, once this week, call the Alzheimer's Association 24/7 Helpline at 800-272-3900. The Association describes it as a free service available around the clock, 365 days a year, with bilingual staff or interpreter service that accommodates more than 200 languages. You can say: my mother was just diagnosed and I do not know what to do first. That is a complete call.
The Alzheimer's Association Missouri Chapter serves 86 counties in Missouri and 10 in Illinois. You reach it through the same 800 number. The Helpline page on this site has the rest of the local numbers if you want them later.
The Association's Facts and Figures page estimates 7.4 million Americans age 65 and older living with Alzheimer's in 2026, about 1 in 9 people age 65 and older (11 percent), and 74 percent of them age 75 or older. The same page says 59 percent of dementia caregivers report high to very high emotional stress, that nearly 13 million Americans provide unpaid care, and that in 2025 unpaid caregivers provided more than 19 billion hours. The Family Caregiver Alliance says about 50 percent of caregivers get no outside help at all. Those are folder facts. Not tonight's job.
The next doctor appointment, and one written question
The NIA's next-steps page after an Alzheimer's diagnosis is short on purpose. Attend appointments with the primary care doctor and any recommended specialists. Ask for a referral to a memory disorders clinic. That is the medical track. This desk does not add to it.
Write one question at the top of a sheet of paper and take it into the room. One. If you bring twelve, you will ask none of them. A useful first question is: would a referral to a memory disorders clinic help us from here? Another is: if something changes at night, who do we call besides you? Both are logistics. Take notes. Repeat back the next appointment date before you leave.
The Knight Alzheimer Disease Research Center at Washington University is in St. Louis. Its public pages list support, education, events and volunteer research. It is a research center, not a walk-in clinic. Use it later for the education calendar if you want.
Tell the siblings, and the first family meeting
Tell the siblings this week, even if the last conversation went badly, even if one of them lives an hour or more away. The NIA says that if you live an hour or more away you are a long-distance caregiver, and that the work from there includes money management, arranging in-home care, respite and emergency planning. Distance is a role, not an excuse and not a verdict.
The Family Caregiver Alliance says a family meeting should include everyone who is or will be part of the caregiving team. The same page says that if someone has dementia, it might be appropriate to hold at least the first meeting without that person present. That is the first meeting. Hold it without her if the conversation is about who does Tuesdays. Hold the second one with her, about her house and her week, in words she can use.
Keep the first meeting short. What did the doctor say. Who is in the house this week. Who is going to the next appointment. Write it down and send it.
The Family Caregiver Alliance's page on siblings says discord most often comes from an unequal division of caregiving duties, with one sibling generally taking the primary role because they live closest, are seen as having fewer obligations, or are considered the favorite child. Name the hours. Do not name the childhood.
Do not turn the house into a prison
Do not spend this week turning her house into a facility. Do not put a lock on the inside of the front door that nobody can open in a fire. The Alzheimer's Association says it in seven words: never lock a person in at home.
The Association says six in 10 people living with dementia will wander at least once. The same page says to identify the time of day the person is most likely to wander, and to call 911 if she is not found within 15 minutes. Learn the door this week. Walk it. Notice whether she watches it at dusk. Notice where the coats live. Knob covers, high deadbolts and night lights are a later list.
The question of whether she can be left alone is its own page. Sundowning, if the late afternoon is already the hard hour, has its own page too. If she has already left the house and been brought back, the first week and the door week have arrived together. Still do not lock her in. Put a person in the house for the hour she leaves, which is a person, not a lock.
The local numbers: Aging Ahead, SLAAA, 211, Eldercare Locator
Once the Helpline call is made and the siblings have a time, use the local numbers. They are not all the same number, and they are not all for the same thing.
Aging Ahead is one of 10 Area Agencies on Aging in Missouri and has provided supportive services in St. Louis, St. Charles, Franklin and Jefferson counties since 1973, including Meals on Wheels, senior centers, caregiving services and community options consulting. If she lives in Ballwin, Chesterfield, Eureka, Glencoe, Grover, Pacific or Valley Park, this is her agency. Missouri has 10 Area Agencies on Aging covering every county. The Missouri Senior Resource Line at 1-800-235-5503 connects you after you give a ZIP code.
If she lives inside the City of St. Louis, the St. Louis Area Agency on Aging serves older adults and persons with disabilities 18 to 59 who reside in the city. The number on the city's page is (314) 612-5918. United Way 211 Greater St. Louis is a trained resource specialist, 24 hours a day. Dial 211.
The NIA's next-steps page says to find local services by visiting the Eldercare Locator online or calling 800-677-1116. That is the federal directory, useful when a sibling out of state wants to help and does not know Aging Ahead from the city agency. Support groups can wait a week, or they can be this week if you want a room of people who already know this week. The Alzheimer's Association describes peer- or professionally led groups, virtual and in person, with specialized groups for adult caregivers. The Helpline will find one with you.
What to do tonight
Save 800-272-3900 in your phone under a name you will find at 2 am. Write one question for the doctor. Send the siblings a time, not a speech. Walk the front door once and notice where the coats are. Then stop. The papers, the money and the hardware are next week's list.
When to ask the care team or the doctor
Anything clinical belongs with her physician. What the diagnosis means, what a medicine is for, whether a new confusion is the disease or an infection, whether she should still drive: those are not questions for a web page or for a sister on a group text. The NIA says to attend the appointments and to ask for the memory clinic referral. Bring the one-question page. Bring a three-line log if the nights have already changed. Nothing on this page is medical advice.
Paid placement, disclosed
Some families in Ballwin, Chesterfield, Eureka, Glencoe, Grover, Pacific, Valley Park and St. Louis already know they cannot cover an hour this week, usually the late afternoon. New Plan Care Solutions is a non-medical in-home company that can send a caregiver for those hours: company, a routine, someone near the door. Call (314) 405-0887.
Disclosed feature. New Plan Care Solutions is a client of OwnersFirm, which publishes this site, and pays for this placement. It was not ranked against anything on this page.
Keep reading
- Alzheimer's Association St. Louis chapter helpline, and the other lifelines
- Is it safe to leave a parent with dementia alone?
- What is sundowning and what do I do about it?
From the sources on this page
800-272-3900Alzheimer's Association 24/7 Helpline: free, around the clock, 365 days, more than 200 languages. 6 in 10People living with dementia will wander at least once, per the Alzheimer's Association. 800-677-1116NIA: find local services via the Eldercare Locator, or ask for a memory clinic referral. 86 countiesThe Missouri Chapter serves 86 counties in Missouri and 10 in Illinois.