Caring for Someone With Dementia: Your Account Is Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical or legal advice. Read on 6 November 2026.

If you care for someone with dementia, you know the illness in a way no clinic does. You saw the first changes long before the diagnosis. You know which days are good and which are bad, what helps in the evening, which medicine made things worse, and how the illness has moved month by month. Much of that never reaches a medical record, because the person living with dementia often cannot tell it, and appointments are short.

That knowledge is valuable to research, and carers are the ones who hold it.

How many families this concerns

According to the WHO, in 2021, 57 million people were living with dementia worldwide, and every year there are nearly 10 million new cases. Alzheimer disease is the most common form and "may contribute to 60–70% of cases".

Carers carry much of the weight. The WHO notes that in 2019 dementia cost economies globally US$ 1.3 trillion, and that "approximately 50% of these costs are attributable to care provided by informal carers (e.g. family members and close friends), who provide on average 5 hours of care and supervision per day". It is also direct about the limits of medicine: "there is no cure for dementia, but a lot can be done to support people living with dementia and those who care for them."

What research learns from carers

Many of the questions research asks about the course of dementia, which symptoms come first, how quickly things change, what helps with sleep, agitation or eating, and which treatments make a difference in daily life, are ones the people who watch it closely can answer. A structured account from a carer, with the timeline of changes and every treatment or approach rated for how well it worked, is exactly that kind of evidence. Research firms pay carers for it: a listing of current studies shows a 90-minute interview with dementia caregivers paying $160 for the first interview plus $110 for a follow-up, and a 30-minute interview with Alzheimer's patients and caregivers paying $60.

The records worth keeping

NICE's guideline on dementia sets out the assessment most people go through, and each step leaves a record:

• Blood and urine tests to exclude reversible causes of cognitive decline.
• A cognitive test, using a validated brief structured cognitive instrument such as the 6CIT or the Mini-Cog, and sometimes neuropsychological testing when the diagnosis is unclear.
• Structural imaging, to rule out reversible causes and to assist with subtype diagnosis, usually an MRI or CT report.
• Letters from the memory clinic and specialists, and the medication history.

Beside these, the most useful record a carer can keep is a simple diary: dated notes of changes, bad nights, falls, new medicines and what seemed to help. If you act for the person, you may be able to request a copy of their records as their legal representative.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete Alzheimer's story with a year of the records the guideline lists comes to about $95 per licence on the benchmark today, and with 60 entries of a carer's diary about $279 per licence. You can see every source on the Alzheimer's disease page.

Sharing a story for someone you care for

On CureCircle, you can tell a story about someone else: your parent, your partner, or anyone you care for. Write what you want to share in your own words ("my mother has Alzheimer's"), and the questions are asked about them, with an AI interviewer asking about what you saw and kept track of. You can add their letters, test results and pages of your diary as PDFs or photos.

Before anything is shared, you read the de-identified summary and confirm that you share it as their parent, legal guardian or representative, or with their permission. The research record marks that a carer told it, names nobody and places them no more precisely than a country. You can withdraw it at any time. How de-identification works, and what it cannot promise.

What you have seen, day after day, is evidence nobody else holds. Start a story for someone you care for.