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The genetic link between Down's syndrome and the onset of dementia is becoming increasingly relevant for service development, as people with learning difficulties lead longer, more independent lives. Natalie Valios examines how services are evolving.

The incidence of people with Down's syndrome developing dementia has caught professionals unaware. At least 36 per cent aged 50 to 59 and 54.5 per cent aged 60 to 69 are affected by dementia, compared to 5 per cent of the general population aged over 65 years.¹

This high incidence rate is explained by the fact that most people with Down's syndrome have three copies of chromosome 21, which is implicated in the development of Alzheimer's. And, because people with Down's syndrome are living much longer - an increase in life span during the past 60 years from an average of nine years to more than 50 today - far more are living long enough to develop dementia.

Unfortunately, according to the Foundation for People with Learning Disabilities, services have failed to respond to people's changing needs. Many professionals and carers remain unaware of the increase in dementia and services have yet to catch up with reality.

Although the closure of long-stay hospitals for people with learning difficulties was essential, it has had an impact on services available to those with dementia. These institutions were very experienced at working with people with learning difficulties through their whole life. While older people were transferred to residential homes when they closed, younger people with learning difficulties went into community services where too often no real plans were made for their long-term needs.

David Thompson is project manager of the growing older with learning disabilities programme at the Foundation for People with Learning Disabilities. He says: "We are concerned that services have not kept up with these developments. Too often, people with dementia are turned away from the residential homes and day centres they are familiar with because those services cannot cope with their increasingly complex needs."

In an ideal situation, clients who develop dementia would have enough support to remain where they are, whether it be in their family home or in a residential home. Most commonly, though, that support just isn't available. The result is that, at a time when they need specialist services the most, they are moved to what is often less appropriate accommodation, such as residential care for older people when they are still in their 40s or 50s, or generic dementia services which are inappropriate for people with learning difficulties.

There are various valid reasons why someone developing dementia cannot stay where they are - for example terminal care isn't provided, or there are no ground floor bedrooms and bathrooms. "You need the right physical environment, staff who are willing to go the extra mile, and support from the organisation and the funding authority," highlights Thompson. "But it doesn't happen that often."

The lack of awareness around the link between Down's syndrome and dementia also often means staff do not know the early onset signs to look out for, he adds. This coupled with high staff turnover, or overuse of agency staff who will not know the client well enough to notice any changes, results in symptoms being missed. This oversight has finally been recognised, however, and one of the modules for the new learning difficulty award framework level one and two is on dementia.

Sometimes, it's not training that is the problem, but the amount of staffing and funding.

Surrey Oaklands NHS Trust provides services for people with learning difficulties and mental health problems. It has about 100 homes for people with learning difficulties, as well as community services, day services and challenging needs services.

Karen Dodd, head of psychology at the trust, explains: "We have no problem in our local area in giving our staff skills. But the rate of change is so quick that we are forever playing catch-up."

Dodd helped put together a briefing sent to all health and social services commissioners in the country.2 It sets out planning considerations for the future, which include increasing the range of residential provision available to include more appropriate day services; more specialist services; care packages in existing family homes or social care housing; transport that takes into account clients' mobility problems; and more money on aids and adaptations.

These financial factors will be critical if services are to respond adequately:

- More spending, planned and built into budgets over the next 10 years to manage the change required to buildings, staffing levels and specialist services.

- Financial flexibility to allow individual care packages, possibly involving pooled budgets.

- Where the carer of the person with dementia is elderly and also in poor health, then services need to be tailored to their combined needs.

- Fast financial decision-making.

Just a handful of specialist services work in this area and Dodd believes there is a need for more to support those people who are in inappropriate settings. "We need to think about where we move them and what we develop," she says.

¹ Foundation for People with Learning Disabilities, New Guidelines on an Overlooked Need, FPLD, 2001

² K Dodd et al, Down's Syndrome and Dementia: Briefing for Commissioners, Foundation for People with Learning Disabilities, 2001

new home designed to reduce confusion

Although the first private specialist service for people with Down's syndrome and dementia has yet to open, it could already fill all its eight beds. Kingston House in Kingston, near Canterbury, is being set up by CareTech Community Services to provide palliative and terminal care, and will open this month.

The house was converted to minimise the disorienting effects of dementia. Special lighting has been installed to eliminate shadows, as they can create confusion, as do colour breaks in carpets either side of a door.

There will be no full-length mirrors in the house. "Because their long-term memory is maintained and their short-term memory is scrambled, they will have an image of themselves from maybe 20 years ago," explains CareTech director Stewart Wallace. "So they would see a stranger looking back at them, which is frightening."

As most residents will be in their fifties, the surroundings will reflect their long-term memories to ensure that they will feel comfortable, so the decor will be reminiscent of 30 years ago. Paintings and pictures will have no reflective glass. And all toilet doors will be painted the same colour to help residents memorise where they are.

Bedrooms will have curtains and blinds to eliminate the confusing light of sunrise and sunset, while circular paths track from the house around the garden and back again, with no steps, to enable people to wander safely outside.

case study

Margaret Tray spent almost 40 years caring for her sister Kathleen, who had Down's syndrome, until she died at the age of 69 in February 1997.

Margaret was four when Kathleen was born in 1927. A few weeks later during a hospital visit, a doctor told their mother to leave Kathleen at the hospital and "try to forget she had been born".

Kathleen's parents ignored the advice and she remained in the family home, learning to speak, read, sew and knit. Although Margaret later married and left home, she remained involved in caring for her sister. Eventually both her mother and sister came to live with her and her husband.

After nursing her mother through cancer until she died aged 87, Margaret continued to care for Kathleen until she suddenly developed severe dementia. She became doubly incontinent and lost her speech and mobility. Although Kathleen needed 24-hour care, the only support Margaret had was a home care service for 20 minutes twice a day. Margaret was 64 and exhausted. After six weeks of looking after Kathleen with her increased needs, her doctor warned her that unless she moved Kathleen, they would both end up in hospital.

"It was terrible having to make that decision, because I promised my mother I would always look after her," says Margaret.

It wasn't until weeks after Kathleen's death that Margaret learned that there were learning difficulty nurses in the district. Since then, her self-imposed task has been to create greater awareness, and she has written a book about her experiences.¹ "When I look back and think what there is now, of course things have improved. But there's still room for a great deal more improvement."

¹ Margaret T Fray, Caring for Kathleen: A Sister's Story about Down's Syndrome and Dementia, British Institute of Learning Disabilities, 2000