After a diagnosis: the first month

1. With the doctor: questions and care navigation

Write down questions before the next appointment and ask the doctor to write down the specific diagnosis and stage.

1. Ask what the diagnosis means and what to expect next. Ask what kind of dementia or cognitive change it is, how it may change over time, what treatments or clinical trials are options, and which symptoms should prompt a call between visits. Source: Alzheimer's Association Source: NIA
2. Keep simple notes between visits. Use notes for reminders, a calendar for appointments and a pillbox for medicines, and ask family members or friends to help with routine tasks. Source: NIA Use the visit sheet to print one page for the clinician.
3. Ask the clinician to review all current medicines and other health conditions. Medicine side effects, thyroid, kidney or liver problems, low vitamin B12, too little sleep, alcohol, and stress or the loss of a spouse can all cause memory problems, and some are treatable. Source: NIA
4. Ask if the clinic participates in Medicare's GUIDE Model for dementia care. CMS's Guiding an Improved Dementia Experience (GUIDE) Model is an 8-year nationwide Medicare pilot launched in July 2024 for people with dementia enrolled in Original Medicare Parts A and B who live at home or in the community (not in hospice, PACE, or a long-term nursing home). Participating programs pair the person and family with a care navigator, caregiver education, a 24/7 support line, and respite services. Source: CMS GUIDE Model Source: Alzheimer's Association

2. Who speaks for you: wishes and papers while you can choose

Putting plans in place early means the person with dementia chooses who will help and what matters to them.

1. Start legal, financial, and care planning early while the person can still take part. Waiting until a crisis can take away the person's voice in their own care. Source: Alzheimer's Association Source: NIA
2. Name the person who would speak for you for health care and for finances. A durable power of attorney for health care names a health care agent, and a durable power of attorney for finances names someone to manage bills and property; without them, a family may have to go to court for a guardianship or conservatorship. Source: Alzheimer's Association Source: NIA
3. Write down Care Wishes for future medical care. Talk through what matters most and record wishes for medical care at caregoals.com while the person can say them in their own words. Source: Alzheimer's Association Source: NIA
4. Sign a medical release of information with the clinic, and gather key papers in one folder. A medical records release signed at the doctor's office lets the clinic share information with the people you name; keep insurance cards, the medicine list and power of attorney papers in one place the family can find. Source: Alzheimer's Association

3. Driving and getting around safely

An early diagnosis does not always mean stopping driving today, but every family needs a plan for when driving is no longer safe.

1. Talk about driving early, before an accident or getting lost forces the choice. Agree together on how the family and doctor will check driving safety over time and how errands, appointments, and social visits will work after retiring from driving. Source: Alzheimer's Association
2. Watch for specific warning signs on the road. Warning signs include forgetting how to locate familiar places, failing to observe traffic signs, making slow or poor decisions in traffic, driving at an inappropriate speed, becoming angry or confused while driving, hitting curbs, making errors at intersections, confusing the brake and gas pedals, or returning from a routine drive later than usual. Source: Alzheimer's Association
3. Ask for an objective driving evaluation when unsure. An occupational therapy driving rehabilitation specialist can conduct a comprehensive driving evaluation; ask the doctor for names of driving evaluators. Source: Alzheimer's Association Source: NIA
4. Prepare a wandering plan before someone gets lost on foot or by car. Keep a recent close-up photo, and use If they get lost to print a wallet card on this phone. Source: Alzheimer's Association

4. Home safety: one room at a time

Small changes around the house prevent falls, burns, and medication mix-ups while helping the person stay independent longer.

1. Check the kitchen stove and appliances. Use appliances with an automatic shut-off feature or apply stove knob covers, and keep tools, chemicals and cleaning supplies out of reach. Source: Alzheimer's Association
2. Remove locks on interior bathroom and bedroom doors, and secure exterior doors. Removing interior locks keeps the person from locking themselves in; on outside doors, place a latch or deadbolt above or below eye level. Source: Alzheimer's Association
3. Lock medications in a drawer or cabinet, and remove firearms or lock them away. Use a pill box organizer so daily medicines are easier to track, and remove guns or store them in a locked cabinet. Source: Alzheimer's Association
4. Clear walkways, add night lights, and add grab bars in the bathroom. Remove throw rugs, add night lights between the bedroom and bathroom, and install grab bars in the bathroom. Source: Alzheimer's Association See fallprevention.help for a room-by-room fall check.

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