Alzheimer’s patients create future memories for friends and family

Summary

The Flemish Alzheimer’s League has set up a project that allows people with early-onset dementia to record messages for loved ones that can be sent up to 10 years in the future

Precious memories

I’m still here. That’s the defiant title of the new project by the Flemish Alzheimer’s League, which is aiming to give people with dementia “the power to speak for themselves.”

To do this, they’ve created a website where people with early-onset dementia can record messages and memories for friends and family, to be sent at a date up to 10 years in the future.

“It’s a way to send a strong message: ‘We know how things are, but that doesn’t mean we’re going to give up’,” says director Hilde Lamers.

Anyone who wishes to send a memory to a loved one using the site can upload their message and the recipient’s email address to the website. They can then choose a date when they’d like the message to be sent.

“The disease is a great burden at an early age,” says Lamers. “People with early-onset dementia understand what awaits them. That’s why we’ve given them this opportunity to record messages for later, while they still can.”

The platform, which was developed with Expertisecentrum Dementie Paradox (the Paradox Dementia Expertise Centre), is accessible to everyone, she explains.

A battle to be understood

Around 6,000 people in Flanders currently live with early-onset dementia, but Lamers says people under 55 are often misdiagnosed as suffering from stress, depression or burnout.

“We often hear that people with early-onset dementia and their families are misunderstood,” she says. “They’re told things like, ‘You’re exaggerating’, ‘There’s nothing wrong with you,’ or ‘Everyone forgets things now and then’. Statements like these are painful.”

It’s a way to send a strong message: ‘We know how things are, but that doesn’t mean we’re going to give up’

- Flemish Alzheimer’s League director Hilde Lamers

She says that because of this attitude, people whose symptoms develop at a younger age are often more prone to feelings of frustration or helplessness. “They are far more aware of how their faculties are deteriorating, and they also still have a long future with the illness ahead of them,” she says.

That’s why every year the association tries to organise projects aimed at people with early onset dementia; last year, the League created a series of simplified versions of existing books. But this year, the group was keen to allow sufferers to speak for themselves.

To accompany the website, the League has released a short radio documentary, following the stories of six people with Alzheimer’s as they record their own messages to their loved ones.

Humour and sadness

As well as helping sufferers of early onset dementia and their families, Lamers says the League is also keen for the wider world to understand the battle that dementia sufferers face every day. “They’re fighting on two fronts: against early onset dementia and against prejudice.”

The aim of the project was to combat that attitude. The documentary, which sees people sharing their memories with humour, candour and sadness, has been listened to thousands of times.

“The media attention has been amazing. In radio, television and newspapers, people with dementia were all over the news,” Lamers says. “One newspaper dedicated an article to all the letters they had received.”

As one of the documentary’s storytellers put it: “Alzheimer’s will never rob me of these wonderful memories.”

Photo: Johan, 53, has early onset dementia and took part in the Alzheimer’s League’s documentary

© Dieter Hautman