Downs syndrome and dementia

The number of people with Down’s syndrome developing dementia is rising as life expectancy increases. Vern Pitt visits one of the UK’s first homes to meet the needs of this group

It is well documented that the English are slaves to their tea, but teatime’s capacity to stimulate change is less celebrated. But that was when a pioneering care home for people with Down’s syndrome and dementia was conceived.

“One of the community nurses and I were having a hot drink one day and she asked whether we’d ever thought about doing a Down’s syndrome with dementia service,” says Samantha Marriott, operations director at Dignus Healthcare. “It was a eureka moment.”

Dignus, which specialises in services for people with learning disabilities and additional needs, is preparing to open Highcroft House, one of the country’s first Down’s and dementia-specific facilities, just outside Birmingham.

People with Down’s are at a far greater risk of dementia than the general population (see box), and their increasing life expectancy is behind a rise in the numbers with both conditions.

Screaming and confusion

Marriott had long been aware that the two conditions combined made it difficult for people to have their needs met in either dementia or Down’s-specific settings.

The behavioural traits of people with Down’s who have lost cognitive function through dementia can differ from those of others with the brain disease. According to Marriott, there can be “a lot of screaming, outright confusion and refusal to do things”, providing challenges to staff who may not understand the root causes.

Support worker Amrita Mander, who will join Highcroft when it opens, has found this in only a short time meeting prospective service users. “Even with things as basic as communication you have to really work with the person,” she says.

Diagnosis itself can be hard, given the difficulties in communication and the propensity to misinterpret early symptoms of dementia as part of the person’s learning disability.

One common issue is “sundowning”, where people become distressed as sunset approaches. The exact reasons are not known but a decreased ability to distinguish reflections of people in windows from real people is thought to be the cause.

It means the staff at Highcroft House need to be diligent in ensuring there is enough light in the home and curtains are closed before dusk. “The house is for eight people and if you had eight people ­experiencing that at the same time it would be horrendous,” says Marriott.

Ban on lino

There are countless other considerations which Marriott and her team have taken into account while designing the home, including a ban on lino. “They see the floor as a puddle and fear they will fall into it. They will not walk on it,” says Marriott.

Palliative care has been planned into the service to avoid residents having to move out as the end of their lives ­approaches. That has presented Marriott with its own challenges.

“It’s about thinking three steps ahead all the time, so that people can move into the room and remain there as they go from being independent to their last days.”

The installation of expansive bathrooms and colour-coded doors – colour is one of the last senses to deteriorate with dementia – are just two examples of this.

While acknowledging that residents’ conditions will worsen, Marriott’s team will focus heavily on maintaining their independence and skills, such as cooking and eating with cutlery, for as long as possible.

But rather than just maintaining standards, the team also aims to increase quality of life by enabling residents to venture out and gain new experiences.

Starting from ground zero

“Some of the service users I’ve met are living at home and their families have found it difficult,” says Mander. “They’ve never been able to do things like go to concerts.”

Designing the facility took 18 months of research and months more of consultation with professionals and service users. The lack of comparable facilities prompts Marriott to describe the process as starting from ground zero.

But this challenge hasn’t dampened her enthusiasm for the project and before it is even opened she has plans for the future. “Outreach work is going to be the next step,” she says. “We’ve already got interest in that from other local authorities.”

The response of service users who have visited the unit has been positive. “They like the idea of the unit being like an actual house and not an institution,” Mander says. “We’ve even had some service users who have said, ‘I’m choosing this bedroom if I move in’.”

You can’t get a better review than that.

Down’s and dementia

People with Down’s syndrome are at a far higher risk of developing dementia than the rest of the population, with research suggesting a genetic link between the two conditions. According to figures cited by the Alzheimer’s Society, more than half of people with Down’s in their sixties have dementia, compared with 1.3% of the general population aged 65-69. People with Down’s also tend to develop the condition earlier, with more than one-third of people in their fifties having the condition.

This article is published in the 22 October issue of Community Care magazine under the heading “We’re thinking three steps ahead”