The Alzheimer's paperwork: what to file and who needs a copy

Get the diagnosis in writing before you leave the building

A great deal of what comes next requires the diagnosis on paper, on letterhead, with a date. Programs, insurers, employers, benefit offices and adult day services all ask for it, and each one wants its own copy.

Ask at the clinic desk for a printed copy of the visit summary and, separately, a letter stating the diagnosis and the date. Ask who signs it and how long it takes. If it is posted rather than handed over, write down the date it was promised.

When it arrives, scan it immediately and make six paper copies. Put the original in a plastic sleeve at the front of the binder and never let the original leave the house. Every time you send a copy somewhere, write down where it went and on what date, on the back of the sheet or in the binder's document index.

You will be surprised how quickly six copies goes.

• The printed after-visit summary from the appointment itself
• A dated diagnosis letter on the clinic's letterhead
• The name and phone number of the person who produced it
• Six paper copies and one scan
• A sent-log: who received a copy, and when

The forms that will ask for it, so you are not surprised

Nobody gives you the list, so here it is. Each of these is an administrative process with its own form, its own office and its own timeline. Start a page in the binder for each one you begin, with the date started, the reference number, the person you spoke to and the next action.

The reference number is the thing to guard. Write it down at the moment it is given to you, on the phone, before you hang up. Half of the frustration in this process comes from ringing back and not being able to prove you have rung before.

Do not fill in any form that asks for legal or financial decisions on your parent's behalf without asking an attorney first. Filling in the address is admin. Signing on someone's behalf is not.

• Adult day programs and respite services — most ask for the diagnosis letter and a medication list
• Insurance and Medicare paperwork, including anything the plan calls a prior authorisation
• Long-term care insurance claims, if a policy exists — these have strict, dated forms
• Benefit applications through your county's Area Agency on Aging
• Disability parking placard applications, which a clinician signs
• Employer leave paperwork for you, if you are taking time off
• Bank and utility forms about who may speak on the account — ask the bank what they require

One family update, written once

After a diagnosis, you will be asked what is happening by aunts, neighbours, your parent's old colleagues and the sibling who calls on Sundays. Telling it repeatedly is exhausting, and each telling drifts slightly from the last.

Write a short update page instead, dated, factual, one side of paper. What was confirmed and when, which clinic is involved, what the next appointment is, what help is currently in place, and what specifically would be useful from the reader. Send the same page to everybody. Rewrite it when something changes, and put the new date at the top.

Agree with your siblings what goes in it before you send the first one. The update is a record, not a bulletin — keep the emotional conversation for the phone, and keep the page dry.

File every version in the binder. Six months later, the run of dated updates is a useful history that nobody had to keep on purpose.

• Date at the top of every version
• What was confirmed, in the clinic's words
• Which clinic, which doctor, next appointment date
• What help is in place now, and by whom
• One specific, named request — not a general appeal for help
• The same page to everybody, no side versions

What to ask at the clinic, and where to write the answer

Clinic appointments are short and the useful questions are almost all administrative. Write your questions on one sheet before you go, leave a wide margin, and write the answers in the margin during the visit. Do not plan to remember.

If a research study or trial is mentioned, do not decide in the room. Ask for the coordinator's name, the printed information sheet and a phone number, and file all three. Ask what the time commitment and the travel involve — those are the practical facts you can weigh at home.

At the end, ask two questions every time: what do you want me to write down before the next visit, and who do I call between now and then. The answers to those two shape your entire month.

• What should I record between now and the next visit?
• Who is my contact between appointments, and what is the direct number?
• Can I have today's medication list printed, exactly as it now stands?
• Which of these appointments can be booked on the same day?
• If a study is mentioned: the coordinator's name, the sheet, the number, the travel
• Is there paperwork you need from me, and by when?
• Which professional handles the legal documents — can you name the type, not the person?

Build the index while your parent can help you build it

There is a window in which your parent can tell you where things are, and that window is worth using early. This is an index, not a legal exercise: what exists, where it is kept, who holds a copy, and when you last checked.

Sit down with a notepad and go account by account. Do not record passwords in the binder; record where the passwords are kept and who knows. Note the professional attached to each item — the attorney, the accountant, the bank branch, the insurance agent — with a phone number.

The same session is a good moment to ask the questions only your parent can answer: which school, which street, the name of the first employer, who is in the photographs. Those answers are not admin, but they are records, and once they are gone they are gone.

Put a date on the index, and a review date twelve months out.

• Document index: what it is, where the original lives, who has a copy, date checked
• Professional contacts: attorney, accountant, bank, insurance agent
• Accounts and subscriptions, with account numbers
• Where digital access details are kept — the location, never the passwords
• Property, vehicle and insurance records
• The names and stories behind the photographs, written down while you can ask

Questions