Remembering what matters for loved ones with dementia

It is a familiar family scene – a doting grandmother, petite in trousers and a red sweater, enjoys the company of her son and grandchildren, chatting and sipping coffee and soft drinks in a bright stylish restaurant decorated with arrangements of orchids, wine bottles and colourful paintings.

Sinclair Simons introduces his mother Hina Woldering. Then we meet her grandsons aged five and seven, Floyd and Diesel, before they leave.

“Do you like this restaurant, mother?” Simons asks. His mother smiles gently. “Well, I haven’t been here before but I will come back some time.”

Hina has been in the restaurant many times but she does not remember. Here in this village that is a familiar story. For this Dutch village is inhabited entirely by elderly people with severe dementia, living in a world without a yesterday or tomorrow.

“It started quite young, my mother wasn’t yet 65 when she started to forget many things, to be frightened. Then a time came when she did not know where she was or what to do about it,” explains Simons.

Within a month of coming to live here at Hogewey last May his mother Hina (70), who suffers from severe dementia, knew her way around the village. The confusion continues but she looks a lot less anxious these days, he tells me.

Experts from all over the world are descending on the small town of Weesp, half an hour's drive from Amsterdam, to see how a pioneering institution has dealt with the challenge of caring for those with degenerative brain illnesses such as Alzheimer's.

Humane approach
Hogewey has developed an innovative and humane way of caring for people with severe dementia, in which their quality of life is uppermost.

The tree-lined streets with their leafy gardens, open spaces, street of shops, theatre, restaurant and square are supposed to look like a real village.

The area – the size of 10 football fields – is surrounded by high-rise flats and other buildings in Weesp, its 23 apartments crafted as normal homes.

But Hogewey is not a real village. It is a nursing home designed to look like and function as a self-contained village community.

Yvonne van Amerongen, senior manager at Hogewey and one of those who set it up, explains. “I used to be a nurse. I looked after elderly people, many of them with severe dementia, in an institutional type of nursing home.

“The patients were always confused, often frightened, people sat together all day in a big room with no stimulation. We decided that’s not how we would like our own parents, or indeed ourselves, to live when we get old.”

So in 1993 van Amerongen and her colleagues set about revolutionising the living environment of the dementia patients they cared for in an old building in Weesp.

They introduced independent lifestyles in a communal setting where even those of advanced years suffering severe dementia were accommodated within an environment as close as possible to what they had known in their own homes.

“Elderly people enjoy doing the things they have always done at home: shopping, a chat with the neighbours, cooking, being in a club, going for a drink.

“We discovered that those with severe dementia were happier, healthier, more relaxed, needed less medication and slept better by giving them back the life they had known.

“In as far as possible that is what we have done here.”

Experience the world
The village design allows its residents to experience the world as they currently understand it, even if it is in the past.

The freedom to walk outside, shop for lunch at the supermarket, help prepare meals, stop for a chat with the neighbours, join a choir or one of over 20 other clubs, is all part of daily life in Hogewey.

During my recent visit I met a number of residents. Some were solitary figures, like a lady in a anorak and trainers who roamed the streets.

Others sat in the sun, chatted together, ambled into each other’s homes or accompanied one of the army of volunteers to the theatre where an art exchange was going on allowing them to borrow a couple of new works to place on their walls.

Here people’s right to live as they choose is respected, unlike in the institutionalised environment of nursing homes where privacy and individuality has been removed, says van Amerongen.

But at what financial cost in times of budgetary cuts? "It costs no more to keep somebody here than in any other nursing home facility in the Netherlands, " she reveals.

For each of the 152 residents, all of whom are classified with severe dementia and whose average age is 83, €5,000 is paid directly to Hogewey by the Dutch public health insurance scheme to which every Dutch taxpayer contributes through their social security deductions. Some residents also pay a means-tested sum to their insurer.

There is a very long waiting list, of at least two years, and only Dutch citizens or those permanently resident in the Netherlands for a number of years are admitted.

Van Amerongen tells how everything – from maintenance to medical care, prescriptions and staffing – are included in that budget.

State funding
The purpose-built village cost over €19 million, much of that provided by the Dutch state and the rest from sponsors and through local fundraising.

The full-time staff of 170 is supplemented by 140 regular volunteers.

“How do we break even . . . well, we manage. At night we need only five nursing staff. It comes from good organisation. We have developed a very efficient structure; care is provided as needed . Many residents are active by day and sleep well at night,” she explains.

It is little wonder that other countries, including Ireland, are now looking at this successful humane concept offering dignified care for dementia sufferers in our world where the greying population constantly grows, mortality rates rise and a cure for Alzheimer’s and other severe forms of dementia is still a long way off.