What Families Can Do After a Dementia Diagnosis
Early planning protects the person’s voice and supports the caregiver.
Posted May 27, 2026 | Reviewed by Gary Drevitch
In my clinical and coaching practice, I see many people with a friend or family member who has just received a dementia diagnosis. I often get asked, “Where do I even start?”
Most people reinvent the wheel over and over. Let me save you some time.
Here is where I tell my clients to start. The items are numbered, but do them in any order that seems most relevant for you.
These are tasks that can be completed over the course of the first 6 months to a year of a diagnosis, not overnight . Start with ONE next step; you do not need to solve the whole future today.
1. Get the medical part organized
After a diagnosis, families need a clear medical plan. You do want to understand what the medical team knows, what they are still watching, and what kind of support may help.
Some questions to ask:
What symptoms should we expect next?
Are there medications that may help? If the medications don’t seem to be working, what is the process for trying something else?
Should we see neurology, geriatrics , psychiatry , neuropsychology, occupational therapy , speech therapy, physical therapy, or palliative care?
Who do I talk to about an ROI when we see other providers? (If your medical providers are in different facilities, you should consider signing a release of information (ROI) so that all of your medical providers can freely consult with each other.)
Who do we call if something changes?
What are the safety concerns right now?
What are the safety concerns we should expect later?
There may also be a Medicare-covered cognitive assessment and care planning visit, which can include safety planning, medication review, caregiver needs, advance care planning, and referrals. (Keep the answers to these questions in a shared system, as per (3) below.)
2. See a social worker and learn about resources
Ask for a referral to a social worker. Nearly every medical facility has a social worker you can be referred to for resource questions, like:
How do we find respite care? How do we get transportation? What is adult day care? What happens if home is no longer safe? What benefits exist? Who can help us understand care options? How do we prepare for a hospital discharge?
A social worker or geriatric care manager can often help with this part. They can help families navigate systems, identify resources, coordinate care, think through safety needs, and connect with community support. For more, you can consult AARP's family caregiving guide .
3. Get the family organized while the person can still be included
One of the greatest and kindest things families can do early is create a shared system for:
Insurance information
Doctor names and locations
Notes from appointments
Early on, the person may still be able to say, “I have an appointment next week at…” but imagine your mother living with dementia saying she has an appointment next week and can’t remember with whom or where. If you start a shared system early, you avoid this. If families wait too long, help can start to feel like an invasion and a sign that things have gone downhill, which can impact hope in the person living with dementia.
If this is not done, managing all tasks will usually fall on one person, and this is too much for one person. Dementia caregiving takes a village.
The best system is the one people will actually use. Some options include Tendercare, Caring Village, and Lotsa Helping Hands but Google Calendar, Apple Notes, Google Drive, or a shared family document can work as well.
4. Use a dementia road map
A roadmap gives families a way to think about communication, safety, driving, legal and financial planning, care options, and caregiver well-being without trying to gather the whole internet. For one helpful guide, click here . You do not need to read everything in one sitting. Pick one section, then flip to the next when you’re ready, then the next.
5. Start advance care planning before it’s too late
Advance care planning allows one to specify their preferences for medical decisions now, before they lose the capacity to do so in the event of cognitive decline . This may include choosing a medical decision-maker, completing medical and financial power of attorney documents, creating or updating an advance directive, talking about finances, driving, living arrangements, care preferences, and what quality of life means to the person.
These conversations can be painful because they make the future feel real; not having the conversations can be more painful. Helpful options include resources from The Conversation Project, Prepare for Your Care, the National Institute on Aging, and Five Wishes.
7. Get palliative care
Palliative care is not the same as hospice. Palliative care is specialized support for people living with serious illness and their families. It can help with symptoms, comfort, decision-making , communication with medical teams, caregiver stress , and planning for what may come next. Helpful resources are available from Get Palliative Care, the Center to Advance Palliative Care, and the National Institute on Aging.
8. Learn a new way to communicate
Dementia changes communication. Families often suffer more when they keep trying to correct, convince, debate, or drag the person back into shared reality. A new approach is needed. Helpful resources are available from the Alzheimer’s Association and UCLA Health offers free caregiver training videos.
9. Make a care plan for the caregiver
The primary caregiver needs a care plan, too—at the very beginning, not just when burnout sets in. Caregivers need sleep, medical care, movement, emotional support, social contact, respite, and practical help, so sit down and make a plan for how you will keep yourself good. Helpful resources are available from the Alzheimer’s Association and the ARCH National Respite Network
This article is part of the Bringwise Psychology Journal — daily insights on human behavior, mental health, and personal growth.