Living with dementia

For families living with dementia

A family archive is something you will get round to. A parent who is forgetting is a deadline.

This is where Storees starts, because it is where the need is real and the clock is running. Around 982,000 people in the UK are living with dementia, expected to reach 1.4 million by 2040. More than a third have no diagnosis. Families carry 63 percent of the cost.

An elderly man in a flat cap, smiling warmly — Frank, 1934 to 2001Eleven minutes about a dance hall that is a Co-op now. It is the only recording of his voice that exists.

What we are building on

This is not a new idea. It is an old practice without good tools.

Life story work has been standard in dementia care for years. It is mostly done on paper: a printable template from Dementia UK, a ring binder in a care home, a shoebox of photographs a daughter brings in. It works, and it is fragile, and it does not survive the person.

NICE recommends group reminiscence therapy as one of three interventions to promote cognition, independence and wellbeing in mild to moderate dementia.

Life story work improves the relationship between a person with dementia and the people caring for them. That is the finding families feel most directly.

Older memories last longer. Dementia takes recent memory first, so the material from sixty years ago is often still reachable long after this morning has gone.

Place is a stronger key than date. Community mental health teams already use Street View to take people back to roads they lived on. A project called BikeAround pairs a stationary bike with it, on exactly this reasoning.

What we will not claim. Across eleven systematic reviews, reminiscence therapy may improve quality of life and reduce apathy. The evidence for depression, cognition and agitation is inconclusive. Storees is not a treatment and will never be marketed as one. It is a better tool for something families and carers already do.

A Sunday afternoon

The visit where nobody knows what to say.

This is the actual problem Storees solves first. Not archiving. The hour in the chair when conversation has run out and both of you are pretending it has not.

Recorded, 11 minutes

The dance hall on the corner

“It was a picture house first and then they put a floor in. Your grandad could not dance at all. He used to stand by the door with his hands behind his back like a policeman until somebody made him.”

Told by Edie, aged 89Recorded by MargaretSD 4281 6412

You open the map on a tablet. You put the pin on the corner where the dance hall was. Street level shows a Co-op now, but the building above the shopfront has not changed, and she recognises the windows.

She talks for eleven minutes. You press record because Storees put the button where your thumb already was, and you do not have to decide in the moment whether this is worth keeping.

Next week the transcript is there, tagged to your father and to a grandfather you never met, and your brother in Australia has added the bit about the policeman stance, which he had heard too.

That recording is now the only one of her voice that will exist. Nobody planned it that way. That is rather the point.

For care homes and memory clinics

Built for the setting, not just sold into it.

Consent

A named custodian

Every archive has one. Storees records who added what and on whose authority, following existing life story practice: consent while capacity exists, best interests afterwards, and an easy route to remove anything a family later regrets.

Data

Handled properly

A dementia diagnosis is special category health data. Care sites get a data processing agreement, a completed DPIA and a written retention policy before a single resident is added.

Afterwards

It goes home

When a resident dies the archive belongs to the family, not the home. They keep it, and it becomes the thing the grandchildren inherit.