Keeping records when your parent has dementia

Start with the one page that goes on the fridge

Before any binder, make one page. It is the page an ambulance crew reads, the page a neighbour reads, and the page a sibling reads when you are not answering your phone.

Write it in plain block capitals, print two copies, and put one on the fridge door and one inside your parent's wallet or bag. Photograph it and keep the photo on your own phone. Then write the date you last checked it at the bottom — an emergency sheet with no date on it is a sheet nobody trusts.

Everything on this page is information you already hold in your head. The only job is getting it out of your head and onto something another person can pick up and read in ten seconds.

• Full legal name, date of birth, and the name your parent actually answers to
• Home address, and a note if your parent may not be able to give it
• Current medication list, exactly as written on the labels — names and strengths, nothing else
• Allergies, as recorded by the prescriber
• Conditions as they appear on the after-visit summary — copy the words, do not paraphrase
• Doctor, memory clinic and pharmacy: name, address, phone
• Insurance plan name and member number; Medicare number if applicable
• Three emergency contacts with relationship and mobile number
• Where the door key is, and any entry code
• The date you last updated the page

The daily log: write what happened, not what it means

The single most useful record you can keep is also the most boring one. Four columns: date, time, what you observed, who was present.

The discipline is to record observations and nothing else. "Tuesday 4pm, could not find the bathroom in her own hall, I was there" is a record. "Getting worse" is an opinion, and an opinion is no use to the clinic. The doctor is trained to interpret; you are the only person who can supply the raw material, and nobody else was in the room.

Keep it where it happens — a clipboard on the kitchen wall beats an app that only you can open. Anyone who spends time with your parent writes in the same log: you, your sister, the paid helper, the neighbour who sits on Thursdays.

Before an appointment, read back through the log and write a one-page summary: the period covered, what came up more than once, and anything that started or stopped. Take the summary in. Leave the raw log in the binder in case you are asked for detail.

• Date and time — always both
• What was observed, in the words you would use out loud
• Who was present
• Anything that changed in the house or the routine that day
• A weekly line for what the log is for: the clinic asked for it, or you did

One routine, written down, so every helper does the same day

When more than one person provides care, the biggest avoidable problem is that everyone runs a slightly different day. Write the routine down once and post it, and the day stops depending on which person turned up.

A routine sheet is a timetable, not a set of instructions about the condition. Times, what happens, where things are kept. It should be readable by someone who has never been in the house before.

Make a second, larger version for the wall in the kitchen. Make a handover sheet for anyone taking over for a day or a week — the routine, the medication record, the contacts page, the what-if page with the numbers to call.

On a paid helper's first shift, hand over a printed pack rather than talking them through it. You will not remember what you told them, and neither will they.

• Wake, meals, quiet periods, outings, bedtime — times, not advice
• Where clothes, keys, glasses, hearing aids and the phone charger live
• Who visits on which day, with a phone number beside each name
• What to write in the daily log before leaving
• Who to call, in which order, and the after-hours number
• Where the binder is kept, and where the spare key is

What to take to the memory clinic, and what to ask

Appointments are short and you will be doing three things at once. Decide beforehand what you are bringing out and what you are bringing back.

Take in: the current medication list, the weekly summary from your log, a written list of your questions, and a note of anything that changed since the last visit. Bring back: written answers, the after-visit summary, and the date of the next appointment before you leave the building.

Write the answers on the same sheet as the questions. If you are told something important in a corridor, write it down with the name of the person who said it and the date. Six weeks later, that note is the only version that exists.

Ask practical, administrative questions — the ones about what to record and who to contact. The clinical questions belong to the clinician, and they will answer them better if you have brought the record.

• What do you want me to write down between now and the next visit?
• Who is my first point of contact between appointments, and what is the number?
• Which of these appointments can be combined onto one day?
• Can I have the diagnosis and the medication list in writing, today?
• Is there a nurse or coordinator attached to this clinic, and do they have a direct line?
• What paperwork do you need from us before the next visit?
• Which professional should I ask about the house, the driving question, and the legal documents?

The documents to find now, and who handles them

There is a set of documents that becomes very difficult to sort out later, and much easier while your parent can still take part in the conversation. You are not drafting anything — you are finding out what exists and where it is kept.

Make an index rather than a pile. One row per document: what it is, where the original is, who holds a copy, and the date you last confirmed it. Note the professional attached to each one, with a phone number.

An elder law attorney is the person who prepares or reviews legal documents about decisions and money. A financial adviser or the bank handles account access. Do not attempt either yourself, and do not ask the clinic — they will tell you the same thing.

When you have the index, scan the originals and keep the scans somewhere your siblings can reach. Then put a review date in the calendar, twelve months out.

• Legal documents about health and money decisions — what exists and where
• Insurance policies and plan cards, front and back
• Bank, pension and benefit paperwork — the statements, not the passwords
• Property deeds, lease, vehicle title
• The diagnosis letter and after-visit summaries
• A note of which professional handles each item, with contact details
• Date last checked, on every row

If your parent goes out and cannot get home

This happens to families who have done everything carefully. Treat it as an administrative event: prepare the record in advance and write down what happened afterwards.

In advance, keep a current photograph — taken this season, showing what your parent actually looks like now — and a written description page with height, build, glasses, hearing aids, walking aid, and the clothes usually worn. Add the places your parent has lived and worked, because those are the places people go. Keep a copy in the binder and a copy on your phone. Ask your local police non-emergency line what registration programs exist in your county and write down what they tell you.

Afterwards, record the date, the time noticed, the time found, where, who found them, and what was being worn. Tell the memory clinic at the next appointment and give them the written account. Give a copy to anyone else who provides care, so the record is shared rather than remembered.

• A current photograph, dated, replaced every six months
• A written description page: height, build, glasses, aids, usual clothing
• Former addresses and workplaces, listed
• What your local police non-emergency line advises, written down with the date
• An event record: date, time noticed, time found, where, by whom
• Who you told, and when

Questions