Write it down before you go, and send it to the clinic ahead of the appointment. A dated, concrete list of what your parent could not do — the missed pill doses, the unpaid bill, the third burnt pan — is the single most useful thing you can hand a memory clinic, because clinicians are required to take a history from someone who knows the person and to weigh that account alongside the testing they do in the room.
Your description is not background colour. It is a formal diagnostic input, and there are standard forms built specifically to capture it from a family member rather than from the patient. Knowing which form the clinic uses, and what it asks, lets you arrive with the answers already gathered instead of improvising under pressure in a twenty-minute slot.
Table of Contents
- Why the clinic needs your account, not just the test
- The three forms a clinic may hand you
- What to write down in the weeks before the appointment
- Saying it without humiliating your parent
- The bias in your own report, and how to correct it
- What to ask before you leave the appointment
- Frequently Asked Questions
Why the clinic needs your account, not just the test
Memory clinics assess two different things: how a person performs on a standardised task, and how they function in their own life. A parent can hold up well for half an hour in a quiet room and still be unable to run a household. NICE's dementia guideline NG97, published in 2018, instructs clinicians to take a history from someone who knows the person with suspected dementia, and to consider supplementing it with a structured instrument completed by that informant.
The same guideline tells clinicians not to rule out dementia solely because someone scores normally on a cognitive test. This matters enormously for families who leave an appointment deflated because a parent "passed." A normal score does not cancel your report of daily failures; under the guideline, both belong in the assessment. The word clinicians use for you is *informant* — the person who supplies the history the patient cannot or will not give. In the United States, Medicare's rules build the same expectation into routine care: as the Alzheimer's Association set out in its Annual Wellness Visit recommendations in *Alzheimer's & Dementia*, CMS requires cognitive impairment to be detected by direct observation "with due consideration of information obtained by way of patient report, concerns raised by family members, friends, caretakers, or others.".
The three forms a clinic may hand you
Most informant tools ask the same kind of question in different ways. Knowing them in advance tells you what to observe over the weeks before the appointment. The IQCODE's framing is the one families find hardest and the one that carries the most information.
It does not ask whether your mother is good with money now; it asks whether she is worse with money than a decade ago. Before you answer, pick a specific reference point from around ten years back — a holiday, a house move, a job — and compare against that. The Alzheimer's Association algorithm names these three, plus the GPCOG informant score, as the informant tools to use, and says further structured evaluation should follow if concerns are noted *or if no informant is present*. The absence of someone like you is itself a reason to look harder.
- **The AD8** is an eight-item informant interview covering memory, orientation, judgment and function. A score of 2 or more indicates cognitive impairment, with reported sensitivity above 84% and specificity above 80%. It was validated by Galvin and colleagues in 255 patient–informant pairs, and is published by the Knight ADRC at Washington University in St. Louis.
- **The Functional Activities Questionnaire (FAQ)** covers 10 instrumental daily activities — preparing balanced meals, managing finances, and similar tasks — each scored 0 (independent) to 3 (dependent), for a total of 0 to 30. A cut-point of 9, meaning dependence in three or more activities, indicates impaired function. The form is hosted by the Alzheimer's Association.
- **The short IQCODE** asks you to rate *change* in 16 areas of memory, thinking and language over the past ten years. A cut-off near 3.3 balances accuracy, with reported sensitivity of 79–100% and specificity of 68–100%.
What to write down in the weeks before the appointment
The Alzheimer's Society in the UK advises keeping a diary of the problems so the clinician can see how symptoms actually affect the person, bringing a list of every medicine including over-the-counter products, herbal remedies and vitamins, and showing any completed dementia symptoms checklist. A diary entry is worth more than an adjective. "Confused" tells a clinician nothing; "3 March — called me at 11pm asking when Dad was coming home; he died in 2019" tells them about episodic memory, orientation and insight in one line.
Aim for date, what happened, and what it cost — a missed dose, a burnt pan, a bank fee, a wrong turn on a familiar road. Cover the instrumental activities the FAQ scores, because those are the ones the form will ask about: Bring the medicine list as physical boxes or photographs of them, not from memory. Anticholinergics, sedatives and some over-the-counter sleep aids can produce cognitive symptoms in their own right, which is why the clinic wants the whole cupboard rather than the prescription record.
- Managing money: bills, cheques, bank statements, unusual payments.
- Shopping and meals: repeat purchases, spoiled food, skipped cooking.
- Medication: missed doses, doubled doses, pill organisers left untouched.
- Travel: driving incidents, getting lost, trouble with buses or timetables.
- Appointments and events: forgotten dates, repeated questions about the same plan.
Saying it without humiliating your parent
The honest version of this history is often one you cannot deliver with your parent sitting beside you. A 2015 review in *Med Clin North Am* notes that patient and informant are ideally interviewed separately, because informants hesitate to contradict the patient or to describe episodes the patient would find embarrassing. So do not plan to say it in the room. Send the diary to the clinic in advance, or phone the nurse or coordinator beforehand and ask that your notes go on file.
Ask directly whether the clinic offers a separate informant interview; many do this as standard and will schedule it if asked. If your parent asks what you sent, you do not need to recite the incontinence episode or the accusation of theft. "I wrote down the things I've noticed so the doctor has the full picture" is true and sufficient. What you are protecting is their dignity in the room, not the accuracy of the record.
The bias in your own report, and how to correct it
There is a known limitation in informant accounts, and it runs in the direction you would expect. A study in the *International Journal of Geriatric Psychiatry* found that greater caregiver burden is significantly associated with worse informant-reported functioning — an over-report effect seen both in dementia samples and in community samples of older adults without impairment. Put plainly: the more exhausted you are, the worse your parent is likely to look on the form. That does not make your account untrue, and it is not a reason to soften what you write.
It is a reason to prefer evidence over impression. Dated, concrete incidents travel better than global judgements, because they survive that correction. "She can't manage money any more" is a rating that a clinician has to discount for your stress level. "Two unpaid electricity bills in July, and a £400 payment to a company she can't identify" is a fact that stands on its own. Where you can, bring the artefact itself — the red-letter bill, the note she left, the photo of the hob.
What to ask before you leave the appointment
Ask which informant instrument the clinic used and what it scored. If the answer is an AD8 of 3 or an FAQ of 12, those numbers mean something specific against the published cut-points, and they belong in your own record of the assessment. Ask what happens if the cognitive test comes back normal but your functional report does not match it.
NICE's position is that a normal score alone does not rule dementia out, so the reasonable next question is what further assessment or follow-up interval the clinician plans. Then ask when they want the diary updated. An informant history taken once is a snapshot; the IQCODE's whole design is built on change over time, and a second set of dated entries six months on will tell the clinic more than any single visit did.
Frequently Asked Questions
My parent will not let me speak to the clinic. What can I do?
You can send information to a clinical team without your parent's permission, even though the team generally cannot disclose their information back to you. Post or email your diary to the clinic addressed to the assessing clinician, and state that it is for the file.
Is it better to bring notes or to fill in a form?
Bring notes. The clinic will choose its own instrument — AD8, FAQ, short IQCODE or GPCOG — and your dated observations let you complete whichever one appears accurately rather than guessing.
How far back should the diary go?
Start now and keep it going, but note the earliest changes you can date confidently. The short IQCODE asks specifically about change over the past ten years, so an approximate "she stopped doing the accounts around 2022" is a useful anchor.
What if I am the one who is wrong about how bad things are?
That is why the clinic combines your account with direct testing, examination and medication review. Record incidents rather than conclusions and let the assessment weigh them.