Pathway Step 4 · Build your kit

🧰 Patient Tools Kit — Dementia

The everyday tools a Certified Prepared Patient keeps within reach: the rules that decide an emergency, the order to make calls, and the trackers that keep the routine on course. Print the cards, fill in your contacts, and keep this kit where the whole household can find it.

What’s in your kit

Eight tools. The first three are the rules you must know cold — they decide when something is an emergency. The rest keep the daily partnership steady and tell you where your role begins and ends.

1 The Sudden-Change Rule 2 The Safety Rule 3 Other Red Flags 4 The Contact Ladder 5 Function Tasks 6 Dementia Medicines 7 The ER Go-Bag 8 Speak Up / Trust the Team
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1 · The Sudden-Worsening Rule

Know this cold

In dementia, sudden worsening (hours to days) is rarely the disease — it’s delirium from something treatable. UTI, pneumonia, dehydration, pain, new medicine.

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DEMENTIA DELIRIUM RULE

Patient card
Sudden ≠ disease
Sudden mental decline over hours-days — treat it as delirium until proven otherwise. The team can find the cause.
Look for the trigger
Check temperature, hydration, urine, recent medicine, recent fall, pain. UTI is the #1 cause in older adults.
Don’t accept it
Caregivers often assume "this is just the disease getting worse." It rarely is when the change is sudden. Push for evaluation.
Your move as patient: Notice acute change. Check vitals. Call the team or go to ED. Most delirium triggers are treatable and reversible.
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2 · The Daily Safety Rule

Know this cold

Dementia safety risks change as the disease progresses: wandering, driving, stove, falls, medicine errors, financial scams. Re-audit every few months.

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DEMENTIA SAFETY RULE

Patient card
Wandering risk
Door alarms, GPS tracker, MedicAlert. Nearly half of dementia patients wander.
Driving
Watch for getting lost, accidents, slower reactions. A driving evaluation may be needed.
Financial scams
Dementia raises scam vulnerability. Monitor accounts, watch for new strangers asking about money, freeze credit if needed.
Your move as patient: Walk through safety quarterly. Get GPS tracking. Take over banking if scams are happening. Lock medicines, sharps, cleaning supplies as needed.
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3 · Other Red Flags — Emergencies

Know this cold

Beyond the two red rules above, these situations also mean immediate help. When in doubt, the home care plan handles ordinary days — these are not ordinary.

🧠 Sudden confusion (delirium)

Hours-to-days change in mental status — often with infection. ED today.

ED today

🚴 Falls

Falls common in dementia. Even minor falls warrant evaluation, especially with head strike.

Call 911 now

😭 Severe agitation

Sudden severe agitation may have a treatable cause (pain, UTI, constipation). Call the team before adding medicine.

Call team today

🥐 Stops eating / drinking

Sudden refusal to eat or drink can mean an underlying problem (mouth pain, depression, swallowing problem, infection).

Call team today
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4 · The Contact Ladder

Fill in & print

When something is wrong, you should not be deciding who to call in the moment — only which rung you are on. Fill in the names and numbers now, while things are calm.

1
Rung 1 · The plan

You's dementia care plan + advance directive

Daily routine, medicines, behavior plan, safety setup, advance directive.

Action plan kept: ________________________
2
Rung 2 · The specialists

Neurology / memory clinic

For new symptoms, behavior issues, medicine adjustments. Memory clinics have nurse lines.

Specialty team: ________________________
3
Rung 3 · Everyday care

Primary care provider

For routine care, vaccines, comorbidities. Often manages dementia day-to-day when memory clinics are not available.

Primary care: ________________________
4
Rung 4 · Emergency

911 / Emergency Department

For sudden delirium, falls with injury, severe behavior crisis, stroke signs.

Preferred ED: ________________________
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5 · Daily Independent Tasks

Tap to log

Tap one icon for each task done independently today: dressing, eating, hygiene, navigation, medicine, social interaction.

Track over weeks. Steady decline normal; sudden decline = call. Bring to neurology visits.

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6 · Dementia Medicine Support

Daily routine

Medicine choices depend on dementia type (Alzheimer's, vascular, Lewy body, frontotemporal). Cholinesterase inhibitors and memantine help most. New anti-amyloid medicines for early Alzheimer's.

The key: dementia is NOT one disease — treatment depends on type. Lewy body dementia is severely sensitive to antipsychotics; vascular dementia benefits from aggressive stroke prevention; Alzheimer’s may benefit from anti-amyloid medicines. Get the right diagnosis.

Cholinesterase inhibitors

Donepezil, rivastigmine, galantamine. Modest help for most dementia types.

Memantine

For moderate-to-severe stages. Often added to cholinesterase inhibitor.

Avoid sedating meds

Anticholinergics (Benadryl, sleep aids), opioids, benzodiazepines all worsen cognition. Review the medicine list yearly.

Treat depression

Depression in dementia is common and treatable. SSRIs help. Treating depression improves cognition and quality of life.

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7 · The ER Go-Bag

Pack once, check monthly

A crisis is not the time to gather paperwork. Pack a go-bag now and keep it by the door. Tap each item as you add it — your checklist saves on this device.

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8 · Speak Up / Trust the Team Guide

You boundary

The hardest skill in patienting is knowing when to act and when to hold back. A great patient is a reliable backup and a fierce advocate — without taking your own care away from them.

💬 Speak up when…

  • A red-flag rule is met and a clinician is dismissing it — restate the rule and the home plan calmly and clearly.
  • You are in the ED and your home plan is being ignored — ask for it to be looked at, and ask for a senior clinician if needed.
  • You are about to be given a medicine or test that wasn’t in the plan — ask why, and ask about alternatives.
  • Your symptoms are escalating between visits — call before it becomes an ER trip.
  • You feel unheard or rushed — it’s OK to say "I need a minute to ask one more question."

🤝 Trust the team when…

  • They have proposed a guideline-based treatment that fits your plan.
  • You disagree from fear rather than from new information — pause, ask one question, listen.
  • You are on a stable run that’s working — small adjustments often beat big changes.
  • Your care partner’s instinct and the team’s recommendation agree — that’s a strong signal.
  • You’ve done your part of the homework — logs, questions, honest history — and now it’s the team’s turn.
The principle: you trained to the depth your clinicians use so you could be a partner in your own care, not a passenger. Speak up for safety and accuracy; trust the team for guideline-based treatment and steady adjustment. When unsure, ask a clarifying question first: “Can you walk me through your reasoning?”
← Back to the Dementia Patient pathway · then mark Step 4 complete