Welcome
Receiving a dementia diagnosis often comes with more questions than answers. This guide will help you organize your loved one’s care, communicate with healthcare providers, and become a confident advocate.
Big Sis Tip: You don’t have to know everything. Keep asking questions until you understand.
Building your care team
Your care team may include:
- Primary care provider
- Neurologist
- Geriatrician
- Pharmacist
- Physical therapist
- Occupational therapist
- Speech-language pathologist
- Social worker or care coordinator
Preparing for appointments
Before every appointment:
- Write down new symptoms.
- Bring an updated medication list.
- Prepare your questions.
- Bring insurance cards and ID.
- Consider bringing another family member.
Big Sis Tip: If you don’t understand something, ask the provider to explain it in everyday language.
Managing medications
Maintain an updated medication list including dosage, purpose, prescribing physician, and schedule. Watch for increased confusion, dizziness, falls, sleepiness, appetite changes, or sudden behavior changes. Never stop medications without speaking with your healthcare provider.
Medical information organizer
Keep together:
- Medication list
- Insurance cards
- Identification
- Provider contacts
- Emergency contacts
- Advance directives
- Medical power of attorney
- Allergy list
Becoming an advocate
Advocating means asking questions, taking notes, requesting second opinions when appropriate, keeping detailed records, and ensuring your loved one’s wishes are respected.
Big Sis Tip: Trust your instincts. If something feels different, mention it to the healthcare team.
You are part of the care team
Doctors bring medical expertise. You bring knowledge of your loved one’s personality, routines, history, fears, and comforts. Together, families and healthcare professionals provide the best possible care.