Building an Advance Care Planning Binder for Dementia

Step 1: Get a sturdy 3-ring binder and tabbed dividers. Choose a binder that is easy to open and large enough to hold letter-size papers. Label the dividers with these sections: Legal Documents, Medical Information, Medications, Care Team Contacts, Daily Care Preferences, and Emergency Plans. You can add more tabs later as needed.

Step 2: Start with the legal section. Include the following documents, completed and signed as early as possible: a durable power of attorney for healthcare (names someone to make medical decisions), a durable power of attorney for finances (names someone to handle money and property), a living will (states wishes for end-of-life care), and a HIPAA release form (allows doctors to share information with you). Use state-specific forms from your state's health department or the Alzheimer's Association. Keep originals in the binder and copies in a safe place.

Step 3: Add a medication list. Write down every medication your loved one takes, including over-the-counter drugs, vitamins, and supplements. For each, note the name, dose, frequency, what it is for, and who prescribed it. Update this list every time a medication changes. Also include a list of allergies and any bad reactions to medicines.

Step 4: Create a medical history section. Include a one-page summary of the dementia diagnosis (type, date, and stage), plus any other chronic conditions (like high blood pressure, diabetes, or heart disease). Add copies of recent lab results, hospital discharge summaries, and notes from specialist visits. This helps every new doctor get up to speed quickly.

Step 5: List all care team members. Write down names, phone numbers, and addresses for: primary care doctor, neurologist, geriatrician, any therapists (physical, occupational, speech), home health agency, and pharmacy. Also include contact info for the local chapter of the Alzheimer's Association and any support groups you use. Keep this list in the front of the binder so it is easy to grab in an emergency.

Step 6: Document daily care preferences. Use a simple form to record what your loved one likes and dislikes: favorite foods, preferred bathing times, activities they enjoy, music or TV shows that calm them, and any routines that help them feel safe. This is especially helpful when someone else steps in to care for them, like a respite worker or adult day center staff.

Step 7: Add an emergency plan. Write down what to do if your loved one falls, gets lost, or has a sudden change in behavior. Include a list of emergency contacts (neighbors, family, and the local police non-emergency number). Also include a 'go-bag' checklist of items to grab if you need to go to the hospital (medication list, insurance card, advance directives, phone charger, and a change of clothes).

Step 8: Include a section for your own health. As a caregiver, you are at high risk for stress-related illness. Add a page with your own doctor's contact info, your medication list, and a note about any health conditions you have. Also include a list of people you can call for support—family, friends, or a counselor. Taking care of yourself is part of taking care of your loved one.

Step 9: Review and update the binder regularly. Set a reminder every three months to check that all documents are current, medications are correct, and contact information is still accurate. After any major change—a hospital stay, a new diagnosis, or a move to a facility—update the binder right away. This keeps it useful and prevents confusion.

Step 10: Share the binder with key people. Make copies of the legal documents and medication list for the person you have named as healthcare power of attorney, and for any family members who are involved in care. Keep the binder itself in a place where you can grab it quickly, but also let others know where it is. If your loved one goes to adult day care or a facility, give them a copy of the relevant sections.