Guide · 8 min read
A dementia diagnosis: what to do in the first 30 days
No one hands you a map. Here is the order things actually need to happen, from US families who've been through it.
Week 1 — Breathe, and write nothing down yet
The first week is for grief and processing. Don't rush into paperwork. Tell one or two people you trust. Cancel anything non-essential. Sleep.
Week 2 — Get the medical picture straight
Request a copy of the diagnosis letter and the neurologist's notes through the patient portal. Confirm the type (Alzheimer's, vascular, Lewy body, frontotemporal — they progress differently). Ask which medication, if any, has been started, and what to watch for. Sign a HIPAA release so the clinic can talk to you.
Week 2 — Durable Power of Attorney and Healthcare Proxy, urgently
These must be signed while the person still has mental capacity. Even early-stage dementia can be a window. Set up both: a Durable POA for finances and a Healthcare Proxy (sometimes called a healthcare POA or advance directive) for medical decisions. An elder-law attorney can draft both for a flat fee; many offer sliding-scale rates.
Week 3 — Money, benefits and practical entitlements
Call your local Area Agency on Aging (eldercare.acl.gov, or 1-800-677-1116) — they will tell you what your state offers for free. Check eligibility for the VA Aid & Attendance benefit if your parent is a veteran or surviving spouse. Look into a Medicaid waiver for in-home care. Tell the bank — most have a vulnerable customer team.
Week 3 — Driving and the DMV
Diagnosis does not automatically end driving, but it triggers an assessment. Many states have a confidential physician reporting process. An occupational therapist driving evaluation is the kindest way to handle it.
Week 4 — Build the support network
Alzheimer's Association 24/7 helpline 800.272.3900. Local support groups through the Association or your state's AAA. Ask the memory clinic about a geriatric care manager — worth their fee for navigating complex cases. Tell siblings what you need; they will help if you ask clearly.
Week 4 — Set up one place for all of it
Binders, notebooks, sticky notes and text threads stop working fast. You need one place for medications, appointments, the POA and HIPAA forms, observations, and the questions you keep meaning to ask the doctor.