It was when Vera White asked at her husband's funeral why her daughter was crying that family members realised the true extent of her dementia. They had known something was wrong for a while: White's husband, Billy, who had himself suffered from very poor health, had reported she was forgetting to do simple chores like washing. But nothing had prepared them for her deterioration after his death.
Over the next 10 months, daughter Lynn Collier was left with no time to grieve as she struggled to look after her mother, who grew increasingly confused.
Today, White is happier and more settled after moving to a new flat in "extra-care" housing - a model being heralded as the way forward in caring for people with dementia. Research published today suggests the approach offers an ideal choice for older people who develop memory problems or dementia and are unable to continue living without intensive support.
Extra-care housing, which offers specially adapted flats, shared communal facilities and varying packages of care, has enabled many people with dementia to maintain their health and independence and retain community links, according to the research - the first long-term study of its kind. Researchers found that people with dementia were able to live independently in extra-care housing for an average of more than two years - almost as long as residents without significant memory loss. Furthermore, friends and relatives were more likely to remain part of an informal support network of residents living in extra-care housing, compared with people living in hospital or being cared for in nursing or residential homes.
Based on interviews with more than 100 residents with dementia in extra-care schemes, and with their families, the research was conducted over three years by older people's housing association Housing 21 in collaboration with the Housing Corporation, the University of the West of England (UWE) and charity Dementia Voice. The research report, Opening Doors to Independence, challenges the long-held assumption that residential care is inevitable for people with dementia.
The report comes as the housing needs of people with dementia are likely to come increasingly under the spotlight. More than 750,000 people in Britain have dementia; but the number of cases is projected to increase steadily to 1.8 million by 2050 as a result of the ageing population.
Transformation
For Collier, from Oxenhope near Haworth in West Yorkshire, her mother's move to a flat in a very sheltered housing complex run by Housing 21 has transformed not just her mother's life, but Collier's as well. No longer terrified of being on her own, her 80-year-old mother spends her days in the communal lounge and enjoys food cooked in the onsite restaurant. "We knew mum's memory was going, but we didn't realise the scale of things until after dad died," Collier recalls. "That time was heartbreaking. Mum didn't mention Dad at all, yet she would sit and look at his empty chair.
"Over the next few months, Bill, my husband, would look after her in the day while I was at work. We had to sort out her food and do her washing. I would see her after work - but when I returned home, she would ring and insist she hadn't seen anyone all day. In the end I became frightened of leaving her. Nothing I did was right and she became very angry and bitter and accused me of leaving her in a prison. It was obvious she was in a world of her own. We spoke to doctors and social workers and they found an extra-care place at Stavely Court, which is just 15 minutes' drive away."
Since White's move to Stavely, near Keighley, West Yorkshire, the relationship between mother and daughter has improved. "She finds other company stimulating and she is a lot happier," says Collier. "There are always activities going on. It is lovely to see her laugh and smile again. At the same time, I know she is being well looked after."
Sarah Vallelly, research manager for Housing 21, says White's case is far from unique and the study uncovered other people whose lives had been transformed after moving into extra-care. All were in their 80s, with a number of different health needs. "The assumption that people with complex health needs including dementia are best cared for in a nursing home is out of date," says Vallely. "While some people in this study did move on to nursing care, the majority had other health needs that were being met successfully within an extra-care setting. What was clear was that extra-care is working quite well, but we want to see an increase in current resourcing levels."
People in the study were proud of where they were and saw their housing as part of a quality of life they valued, adds Vallely. Researchers also saw some improvements in people's short-term memory. "Eating properly in the restaurants helped recall. We also found that if people are in a stimulating environment, they are less likely to exhibit behaviour that is challenging."
However, the report notes that some tenants and families felt there was a lack of understanding of their particular needs and questioned the ability of staff to support challenging behaviour. This might include setting off alarms, or occasionally "wandering." Problem behaviour was found occasionally to lead to people being excluded by other residents - raising the issue of whether people with dementia can be successfully integrated into wider care settings.
Common illness
Experts in ageing argue that they can be, and claim many other residents have memory problems. Research shows that dementia affects one in five people over 80, and one in three over 90, yet many cases go unrecognised. A study of 24 care homes in England and Wales found that only a third of residents with dementia had been given a diagnosis, according to Martin Orrell, professor of ageing and mental health at University College London.
"There is a stigma attached to dementia because it damages a person's ability to communicate, but exclusion is part of everyday life whether people have dementia or not," Orrell says. "Dementia is also much more widespread than people realise. What is important is that services should be based on individual needs. At the moment there are many people with dementia who have unmet needs. Extra-care sounds good, but it needs to be tried and tested and we need a range of provision."
Nursing homes specialising in caring for dementia patients offer an alternative to extra-care housing. These may be the only option for people with advanced dementia, as Bruce Bovill will testify.
Bovill's wife, Jan, a talented musician, first started suffering memory loss 15 years ago, when she was just 50. But it was not until 1998 that she was finally diagnosed with Alzheimer 's disease, during which time she lost the ability to play the piano and even write her name. In 2001, she finally went into a nursing home, after she fractured her pelvis and was assessed as needing continuing care. By this time she was registered blind - loss of sight can be one of the symptoms of Alzheimer's.
The burden of caring
Bruce Bovill, who admits the burden of caring drove him to the brink of suicide, now drives a 50-mile round trip every day from his Surrey home to visit his wife at the specialist home in Basingstoke. Unable to walk or talk, she has a special padded room to prevent her injuring herself. "The mental anguish of caring for someone with dementia is huge," he says. "I would have cared for Jan at home until I dropped, but she got to the stage where needed intensive support because she was so frail.
"She gets that at the home and in a way we spend better quality time together. I spend an hour crawling around the room with her, talking incessantly and reminiscing. I do get some reaction at times - it might just be a smile - and I like to hope she knows me. I have a vision that one day, when I end up in heaven, she will say: 'Thank you for being there when I needed you.'"
Few doubt that nursing homes are well equipped to provide care for people with advanced dementia. Yet advances in drug therapies that slow the condition mean growing numbers of people can be supported to live independently. June Andrews, head of the Dementia Services Centre at Stirling University, says many wish to live at home in familiar surroundings, if they and family carers can get the right health and social care and if their housing is suitable and can be adapted. Others may be forced to leave their homes, but want to avoid an institutional setting.
"Currently there is an expansion of extra-care housing and village retirement communities, but there are also smaller specialist housing units," Andrews says. "Some of these continue a tradition of shared housing, with elements of group living that offer the potential for more companionship and social interaction in a homely environment. Other housing models give opportunities to family members to remain living with the person with dementia."
Stirling has produced a book highlighting good practice in the different models that have developed across Britain. However, Andrews believes more research is needed to explore the models in depth and to discover whether people with dementia, and their carers, are really satisfied with what is offered.
Housing 21's Vallelly agrees further studies are needed. "Our research has shown extra-care can add years of independent living for people with dementia who might otherwise end up in an institutionalised setting," she says. "It is a springboard for radically rethinking what is now offered to people with dementia who are unable to remain in their own homes."
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