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Media 01 May 2015

Article in Journal of Dementia Care

Hogeweyk: a 'home from home' in the Netherlands

Beatrice Godwin is impressed by Hogewey, an award-winning development with an innovative approach to residential and nursing care for people with advanced dementia.

When it comes to learning from international developments in dementia care, there are few better places to look than the Netherlands. Hogewey, located 20 miles south of Amsterdam in the small town of Weesp, is an award-winning development that pioneers an excitingly different kind of provision of residential and nursing care for people with advanced dementia. And its novel approach is much needed when, in spite of the many good examples, there is still too much sub-standard care. Before spending an afternoon there to see it for myself, I read published literature about Hogewey and emailed some questions to Yvonne van Amerongen, co-founder and now director for quality and innovation. The full conducted tour was rather costly, so I could not visit the houses or speak to the residents at home in this dementia village. But, over delicious meals in Hogewey’s restaurant, I met two very informative residents’ relatives who sang Hogewey’s praises, one commenting “It’s brilliant, it couldn’t be better!” The inspiration for Hogewey arose when two members of staff working in the previous home on the site each lost a parent. Both felt that this traditional nursing home would have been anathema to their relatives: “It wasn’t living. It was a kind of dying,” as one of them put it. The idea for something different was born and the site was completely redeveloped. Similar schemes are being planned in several countries. Care in this dementia-friendly community is based on two principles (Henley 2012). Firstly, as its official literature says, “it aims to relieve the anxiety, confusion and often considerable anger that people with dementia can feel, by providing an environment that is safe, familiar and human. Secondly, it focuses on “maximising the quality of people’s lives. Keeping everyone active. Focusing on everything they can still do, rather than everything they can’t.”

Helping new people settle

The novelty of its approach starts before admission. In Britain, potential home residents and their relatives are often asked to provide details of family history and lifestyle (Godwin 2002). In Hogewey, this goes one stage further. Family, staff and the new resident choose which lifestyle will suit them. Before Hogewey opened, an analysis of the most common Dutch home environments identified these options: traditional, city, ‘Het Gooi’ (upper-class), cultural, Christian, Indonesian and homely. ‘Het Gooi’ has lace tablecloths and chandeliers, unlike the traditional Dutch accommodation. The Indonesian house is decorated with tropical plants and statuettes of Buddha. It has ‘very tasty’ cuisine and the temperature is several degrees warmer than everywhere else. Hogewey’s philosophy sees lifestyle (including culture and class) as an element in a person’s life that tends to remain relatively constant. People develop lifelong daily habits and generally like to mix with like-minded people. If these are maintained after a person with dementia moves into a home, it will seem more familiar and acceptable to them. Each of the 23 homes accommodates six or seven residents, who bring in their own belongings, even their pets. Their visitors are welcome, involved and given facilities. Yvonne hopes that, one day, partners may be able to move in too.

Daily life

Residents’ daily life differs from that of the wider Dutch community. It could be described as “a prosthetic environment, compensating for specific isabilities”(Godwin 2004). Using reminiscence therapy, it aims to maximise independence and autonomy. Energetic residents are given finger food which they can eat on the go (Marshall 2003). If they order a cup of coffee in the restaurant, it is on the house. If a resident absent-mindedly starts eating an apple in the supermarket, no one will accuse him or her of shoplifting. If someone selects 20 loaves of bread, the staff member will surreptitiously return 19 to the shop. No one will point out their  mistake, although no one will lie to them either. Residents can order drinks in the café/pub which is also frequented by people from the nearby town. By welcoming others to use its facilities, it generates revenue and provides true care in the community.

In Hogewey, boredom is banished. The focus is on what people can still do, rather than what they can’t. Activities are plentiful, starting with helping with the laundry and peeling potatoes in each house’s kitchen. Those whose dementia is so severe that they are unable to participate are kept involved by the sights, sounds and smells of food preparation (Marshall 2003). Doll therapy (Minshull 2009) improves well-being and meets attachment needs. And there are outings.

Near the central restaurant we glimpsed a craft room full of people, some in comfortable-looking wheelchairs (unlike our old NHS boneshakers). Twenty-five clubs provide activities ranging from Beethoven, boules and beauty therapy to bakery, borrowing CDs and bingo. When I visited, the pub was having a Hawaiian afternoon, complete with fruit cocktails, and male staff joined in the fun by wearing grass skirts over their trousers. The activity leader had a welcoming, upbeat style: one resident was already jogging to the music moments after her arrival, demonstrating improved ‘emotional well-being’ (Holland and Crampton 2009).

For me, the most fascinating aspect was my complete inability to distinguish residents from relatives among the animated participants. Despite their advanced dementia, they still managed to enjoy life, yet there is no enforced jollity. Residents can withdraw to their own rooms if they wish. There are some activities in each house, all individualised to suit those particular residents, and also communal activities residents from any house can attend if they wish.

Life and death in Hogewey

Hogewey’s 152 residents with advanced dementia stay until the end of their lives. Medication is not pressed on unwilling recipients and, because they settle easily, less medication is needed. Staff aim, in Cicely Saunders’ words, to enable people “to live until they die” and there is no sign of dementia as a form of ‘social death.’ The husband of one of the residents, whom we met in the restaurant, explained: “It’s not the sort of slow, quiet death you get in other places.” He described how death is handled sensitively, not swept under the carpet (Godwin & Waters 2009), and his wife, when asked, said “I don’t want to die, I want to live!”

The walled community is designed as a small neighbourhood, within which people may come  and go at will. On a chilly, wet day, I saw (mainly) men, alone, calmly strolling around this village, which is the ultimate dementia friendly environment. Their relaxed demeanour and responsive, smiling faces said it all. As in many communities, Hogewey has a main street, a supermarket, a restaurant, a hairdresser, a café/pub, clinics for a doctor and a physiotherapist, and even a theatre which doubles as a place of worship. The concert hall recently hosted a harp recital, no doubt especially enjoyed by the residents from the ‘cultural’ lifestyle. The layout invites exploration: there are no frustrating dead-ends and, inside, no locked doors.

Imaginatively, a lift from ground floor to first-floor has a sensor which detects people waiting for it, whereupon it automatically arrives. One garden has a safe, circular, walking path (Judd, Marshall and Phippen 1998) and scented plants encourage awareness of the seasons. Several seating areas allow residents to admire water features, models of Dutch buildings, and displays of old-fashioned toys, or merely to watch the world go by. Hogewey offers what can be described as “liberty
in an adapted environment” (Kremer 2013). “The more permissive (it) is, the happier (they) … are. A human being always resents the absence of liberty.” Henley (2012) describes Hogewey as a “curiously uplifting” environment. Not surprisingly, there is a long waiting list.

Emotional memories endure longer than factual ones. I met one resident with very advanced dementia whose daughter described how she retained her personality. She still loved children, revelled in male attention and gained energy from interaction with others. Once, when a 10-year-old boy visitor shook her hand, she cried for 30 minutes. When she unexpectedly encountered another woman whom she had always disliked, she displayed her animosity! Although she no longer spoke intelligibly, she regaled her daughter with animated stories, containing no recognisable words but plenty of non-verbal communication. She appeared to be an excellent example of how successful person-centred care can be, even in very advanced dementia.

Staff training stresses inclusivity

Each of the (around 250) staff has received dementia care training and is encouraged to be respectful and hospitable. There are no uniforms. Hogewey has a golden rule: wherever possible, staff include a resident in their activities. To be served in the supermarket, they need to be accompanied by a resident, who can see the range of goods. This demonstrates how, with one simple regulation, management can ensure best practice. Similarly, at night, residents are left in the dark and quiet which successfully encourages their sleep. Assistive technology enables staff to monitor them without disturbing them and personally attend to any night owls.
Yvonne van Amerongen told me that job satisfaction is ‘quite high’, but, surprisingly, staff turnover is only slightly lower than elsewhere. Clearly, not even Hogewey has found the elusive answer to the problem of motivating staff caring for people with advanced dementia. One relative thought there should be “more staff” for the
exhausting and emotionally demanding role of carer. Health and safety regulations are intelligently implemented. In Hogewey, there are only walkers or cyclists, so no concerns about road safety. The entrance lobby has two sets of automatic sliding doors, the external ones being controlled by a friendly receptionist. She truthfully apologises to any resident who wants to leave unaccompanied that she is unable to open the outer door at the moment. She sometimes needs to summon staff if a resident is desperate to leave and one husband/carer explained that settling in can take up to a year before pleas to go home cease. Norman (1987) likens losing your

Evaluating Hogewey

Hogewey has been criticised, unfairly I feel, as a “deception”, an “illusion”, a way of “hoodwinking” residents (Charter 2012). In my view, this is to confuse residents’ perception with conscious deception. In some settings, residents believe that they are at work in a factory, a school or an accounts office. No one has encouraged this perception: it is just what they believe. Clearly, this involves difficult ethical issues (Nuffield Council on Bioethics 2009). I heard of one British home where a bus stop was installed in the grounds at which people happily gathered to chat while waiting for the bus. I understand that only one man complained bitterly that the bus never came. All new residents are told that they are moving into a nursing home. If they come to believe that  they are living in a village, what can be wrong
with that? Is it preferable for the truth to be brought home to residents every day by an institutional setting, with an impersonal, restricted and boring regime?
I did have some criticisms of Hogewey, all very minor. Firstly, the signage for streets and individual houses could be clearer and more ageappropriate, with words and symbols. A big clock would be improved by the addition of numbers and by being placed slightly lower, so more easily viewed by often stooping older people. I saw one resident, confused by the restaurant’s plate glass windows, trying to work out the way in. In fact, the entrance was not obvious even for those without dementia. There were no large, clear signs to orient people to the ladies or gents, and the lavatory seats and wall tiles were all white, failing to provide a good colour contrast. The modern design of the taps and the flush made them difficult to use and neither the soap dispenser nor the bin was in an obvious position. Outside, grey walls, titles and doors represented a missed opportunity to use colour as an orientation aid. In future, perhaps any alterations to the village will follow the Thomas Pocklington/University of Stirling report guidelines (Greasley-Adams et al 2014). They observe that many older people have visual impairment, some specifically caused by their dementia. This may result in “misperceptions and misidentifications … optical illusions. The consequences … are more serious for people with dementia who … may not realise or remember that they have made a visual mistake or be able to
rationalise or ‘reality check’ what they believe that they are seeing”.

My second suggestion is introducing raised beds where residents could do weeding and planting. Yvonne felt that residents’ advanced dementia prevented them from gardening, although I have seen comparable residents enjoying pottering about, even if their labours were neither productive nor aesthetic! This seemed a missed opportunity, especially for those from a rural background. Lastly, a playground would encourage people to bring in children, another aspect of everyday life
which people with dementia might enjoy watching?

Excellent person-centred care

Some aspects of behaviour may be inevitable symptoms of dementia but I wonder if, one day, they may be alleviated by the ultimate in excellent person-centred dementia care. Elsewhere (Godwin 2012), I praised a ‘smart’ flat, with assistive technology tailor-made for its resident, which enabled him to develop his own strategies to summon help (Evans et al 2007). This apparent improvement is known as ‘rementia’ (Sixsmith et al 1993). Hogewey regularly provides examples of
‘rementia’, where residents appear to recover some of their ‘lost’ abilities. As a result, medication is often reduced. Of course, some of the more debilitating features
of advanced dementia still occur. For example, some residents stop speaking and seem unreachable.

Nothing short of 24 hour, one-to-one attention will assuage the needs of others who appear to be totally disorientated, lost and alone, inconsolable until someone supportive sits next to them and reassures them. Hogewey has 160 volunteers, who probably meet some of this attachment need (Miesen 1992). As often happens elsewhere, some residents attribute the loss of their belongings to theft. Through the window of one house, I glimpsed anold lady bent double, her head almost resting in her lap. Possibly she was merely asleep. Possibly her dementia was too advanced to dispel its worst symptoms of social withdrawal. Anxiety, restlessness and homesickness can still persist, but are reduced by the homelike, welcoming and hospitable setting in which residents can largely do as they wish.

It has been pointed out that there is no research evidence to demonstrate that “such a neighbourhood environment has any beneficial effect in behaviour, functional ability, and cognition” (Chaudhury 2012). It is a good point and the research is needed.

But everything that we do know suggests this kind of environment has much to commend it. In the words of one professor of dementia care nursing in the USA, (Smith 2012), “that’s the kindest, most compassionate way to care for them”. For me, Hogewey was immensely impressive and extremely moving, providing the
nearest I have ever seen to care that engenders Kitwood’s (1998, p23) ”trustful serenity”.

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