The financial and social arguments for "supported independence" rather than "managed dependence" are drawn from demographics, drug treatments and new technology. Then, of course, there's the moral argument. "You don't stop being human after an Alzheimer's diagnosis. People should retain dignity and choice as far as possible," says Lucy Cooper, assistant director of Step Forward, the supported housing arm of the Metropolitan Housing Trust. "That means you need a whole rich mix of provision."
In other words, RSLs will have to provide outreach support to sufferers struggling with disorientation and loss of skills in their existing homes, or manage Alzheimer's in sheltered settings without upsetting the balance of the community. Some RSLs and local authorities are exploring extra care solutions, but find they must walk an ideological fault line between providing tailored care in dedicated Alzheimer's schemes and integrating sufferers with frail, elderly neighbours in general provision.
Today, there are about 700,000 Alzheimer's sufferers in the UK, with the incidence in residential care ranging from 42% in Scotland to 33% in England. But by 2025, when the number of people aged over 60 is expected to have risen from 10 million today to almost 15 million, there will be an equivalent 50% increase in the number of Alzheimer's cases. With the number of residential care beds in the UK currently at about 511,000 and falling, the maths show the need for a new approach.
New anti-dementia drugs such as Aricept, Exelon and Reminyl slow the progress of the disease, extend life expectancy and improve quality of life. They also allow people to retain their capacity to make decisions for longer. "If someone is developing dementia, and they are aware of this, there's an opportunity to discuss their future care. At the moment, there's a lot of silence around the subject," says Meg Price, deputy director of voluntary organisation Dementia Voice.
Metropolitan's Cooper is a trustee of ERoSH, a national consortium of sheltered housing providers. She believes ERoSH's members are already getting to grips with the changing landscape. She says: "A lot of work is being done to raise good practice and to deliver appropriate support to people with Alzheimer's in standard sheltered housing. Providers are looking to develop outreach services to support people in their homes, and to set up day centres and Alzheimer's support groups for carers."
For instance, New Leaf, the supported housing arm of Places for People, is investing in extensive staff training for sheltered housing staff and court managers. "Staff training is critical. If you work with people in the early stages, you can help to delay the progress of the disease," says Chris Greathead, managing director. But, she acknowledges, there are tensions inherent in this approach: "There are real issues about keeping sheltered communities balanced and attractive to people."
As a result, some local authorities and RSLs view dementia-specific sheltered care or extra care as a better environment for dementia sufferers. "For many people with Alzheimer's, extra care is perfectly possible," says Philip Mickelborough of healthcare consultant Laing & Buisson. The idea is that sufferers would move as soon as possible after diagnosis, when they are still capable of signing a tenancy agreement, settling in and making social links, then remain there as their condition progresses.
I would argue very strongly that it’s in the interests of the individual to remain in a familiar environment. Segregation is just not a good idea
John Belcher, Anchor Trust
Hanover Housing Association is one of the RSLs pioneering the field. "If we are saying extra care is an alternative to residential care, we should also offer extra care specifically focused on dementia," says Jon Head, senior service development manager.
Hanover is on site in Barking & Dagenham with a scheme of 25 one-bed and six two-bed flats, while Irwell Valley Housing Association has already opened Shore Green, a 10-unit Alzheimer's scheme in Wythenshawe, Manchester.
However, Head admits that the model has yet to be "market-tested". "We don't know how attractive it will be. People in the early stages of dementia – for whom a move would be most realistic – may be reluctant to move as that would mean acknowledging their condition. But if you leave it too late, the move may not be successful."
However, there is an in-built irony for housing and care home providers. Moving a sufferer to more suitable surroundings can trigger a deterioration in their condition. As a result, Alzheimer's-only extra care is viewed sceptically by some providers.
"I would argue very strongly that it's in the interests of the individual to remain in a familiar environment," says John Belcher, chief executive of Anchor Trust, which has 1000 extra-care places. "My professional view is that segregation is just not a good idea." In Anchor schemes such as Denham Garden Village, a redevelopment of a 1950s retirement community in South Bucks, 90 extra-care places will allow Alzheimer's sufferers to live alongside dementia-free neighbours.
The Extra Care Charitable Trust, which has developed three mixed-tenure, mixed-needs "villages", takes a similar line. "One in four or five residents will develop dementia as the projects mature. We wouldn't want to inject another 10 with dementia, nor move people around. In the early stages, dementia can be accommodated in a normal scheme, and it is part of its ecological growth," says John Payne, partnerships director.
Other RSLs are opting for a halfway house: specialist Alzheimer's accommodation alongside general extra care flats. Notting Hill Housing Trust has two four-bed flats for Alzheimer's sufferers in a 43-flat scheme for Westminster council, and Housing 21 is developing a "pod" of eight flats in a 34-flat scheme for Babergh District Council in Suffolk. In Ipswich, Orwell Housing Association has eight flats dedicated to Alzheimer's sufferers in a 32-unit scheme. "It's working well and fulfilling a demand," says Orwell chief executive Stephen Javes. "We're looking at repeating the model elsewhere."
Technology doesn’t do away with the need for human contact. But it maintains dignity so carers can talk to sufferers, not spend their time doing other things
Meg Price, Dementia Voice
It looks as though extra care aimed at Alzheimer's sufferers – segregated, integrated or somewhere in between – will increasingly feature on local authorities' wish-lists. However, there are concerns that the funding framework – capital grants from the Housing Corporation, care funding from social services budgets, and Supporting People grants for housing-related support – may not be flexible enough to meet demand.
"An extra care scheme for people with dementia is a specialist service. In some areas, it might be quite difficult for it to generate enough demand in its own area," says National Housing Federation policy manager Diane Henderson, who hopes that the new regional housing boards could help by combining cross-border funding pots. The NHF is already trying to raise the issue with the boards, but a possible stumbling block is that they do not include representation from social services.
In terms of revenue funding under Supporting People, tenancy support services for older people are less expensive than services for other user groups. But because dementia implies a level of care that leads to high grant requests, Henderson fears some extra care schemes will have to settle for less than they want. "Its going to be a tight environment," agrees New Leaf's Greathead.
"Assistive technology" is set to eliminate some of the safety problems caused by forgetfulness, and alter perceptions of how well a person with Alzheimer's can cope in their existing home. Sensors to disable taps or cookers after pre-set times are already being installed in many extra-care and standard sheltered schemes, and other innovations include programmable lighting that can illuminate a path to the kitchen or bathroom if the sufferer gets up in the middle of the night.
We have the technology
Housing 21 and Dementia Voice are trying out prototype devices on a sheltered scheme in Gloucestershire, including a "locator" system for lost keys or spectacles. Once the project is evaluated next year, the devices could go into commercial production. "People often don't want to move, and technology can support independent living.
It doesn't do away with the need for human contact. But it does maintain dignity so that carers can talk to sufferers, not spend their time doing other things," says Meg Price of Dementia Voice.
Other applications, though, such as electronic tagging and CCTV cameras, raise the uncomfortable prospect of homes becoming so technology-wired that they remove residents' privacy. Clive Evers, director of information at the Alzheimer's Society, says: "There is potential for improving people's freedom of movement and safety. But the person should always be asked for consent, and there's a danger that these systems could be used as a substitute for trained staff and support."
"It's a sensitive area," agrees Roger Battersby, director of specialist housing and healthcare at architect PRP, which specialises in housing for people with dementia. "Any provider would want to ensure the permission of the resident or relatives." But with an eye on the future, PRP has specified super-fast data cabling for an Anchor Trust extra care scheme. If the capability is built into the development, an appropriate level of technology can be fitted to each flat later on, depending on the needs of the resident.
Source
Housing Today
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