Dementia Atlas
Dementia Atlas

Appointments roadmap

From the first visit through diagnosis and care across Early, Middle, and Late stages - plus what to bring so the appointment is useful.

First visit checklist

What to bring

Gather these before you leave home. Call ahead about interpreters, accessibility, longer slots, or forms you can complete in advance.

Source: NIA · Taking someone to a doctor’s appointment

Care path

Roadmap from first visit to stage-based care

Stages are approximate. People do not move through them on a fixed timetable, and mixed symptoms are common. Revisit the plan when abilities change.

  1. 1

    Step 1

    First appointment

    Usually with a primary care clinician or geriatrician. The goal is to describe changes clearly, rule out treatable causes where possible, and decide on next tests or a specialist referral.

    • Describe concrete examples (missed bills, getting lost, repeating questions, mood or sleep changes) rather than only “memory is bad.”
    • Ask what could be causing the changes besides dementia (medicines, sleep apnea, depression, thyroid, B12, infection, hearing loss).
    • Request a written plan: labs, imaging, cognitive testing, specialist referral, and when to return.
    • Ask who to call between visits for sudden confusion, falls, or major behavior changes.

    NIA · How Alzheimer’s disease is diagnosed

  2. 2

    Step 2

    Evaluation and diagnosis

    Diagnosis is a process, not one test. Clinicians combine history, cognitive testing, labs, and sometimes brain imaging or specialist assessment. A family member’s observations often matter.

    • Expect questions about daily function, medicines, mood, and how abilities have changed over time.
    • Cognitive tests check memory, attention, language, and problem-solving - they are not a full IQ test.
    • Blood or urine tests look for other causes of thinking changes; imaging (CT/MRI/PET) may be used to support or narrow the diagnosis.
    • Ask for the diagnosis in plain language, the stage if known, and what is still uncertain.
    • Leave with follow-up timing (often every 6-12 months, sooner if things change) and referrals written down.

    NIA · How Alzheimer’s disease is diagnosed

  3. 3

    Step 3 · Early Stage (Mild)

    Care after diagnosis - early stage

    Many people still live independently. Focus on clear follow-up, medicine reviews, safety planning, and legal/financial planning while the person can help decide.

    • Ask for a diagnosis follow-up plan: next tests, treatment options, and who manages each piece.
    • Review driving, home safety, and how much help feels right - protect independence without ignoring risk.
    • Start or update advance directives, power of attorney, and a shared medicine/care document.
    • Bring prioritized questions and the medicine list to every visit; take notes to share with family.
    • Use the Care guide for early-stage daily care, communication, and planning checklists.

    Alzheimer’s Association · Early-stage caregiving

  4. 4

    Step 4 · Middle Stage (Moderate)

    Ongoing care - middle stage

    Needs often expand. Appointments work better with a short symptom diary, clearer supervision plans, and regular caregiver relief.

    • Bring a one-page diary of sleep, appetite, falls, agitation triggers, and new symptoms.
    • Ask about pain, infection, constipation, or medicine side effects when behavior suddenly changes.
    • Update supervision, wandering prevention, and transportation plans with the care team.
    • Schedule respite or backup caregivers before burnout; bring that need into the visit as a care goal.
    • Revisit goals of care and whether home support, adult day, or other settings should be discussed.

    Alzheimer’s Association · Middle-stage caregiving

  5. 5

    Step 5 · Late Stage (Severe)

    Ongoing care - late stage

    Care often centers on comfort, skin, hydration, and reducing burdensome trips. Align the clinical team on goals before a crisis.

    • Ask explicitly about comfort-focused goals: pain, breathing, nutrition, and when hospital care still helps.
    • Bring notes on swallowing, pressure areas, infections, and what calms or distresses the person.
    • Confirm who has decision authority and keep the written care plan with every caregiver.
    • Ask about hospice or palliative care referral when appropriate.
    • Use the Care guide’s late-stage filters for daily comfort and communication ideas.

    Alzheimer’s Association · Late-stage caregiving

Before the visit

First stages signs

Early changes that may warrant a clinical conversation.

Between visits

Care guide

Stage-filtered daily care, communication, safety, and planning actions.

Treatment options

Treatments & trials

Approved medicines, combinations, lifestyle evidence, and recruiting studies.