Wednesday, Nov 26, 2014Wednesday, Nov 26, 2014
Opinion
 
Andy Ho, Senior Writer

'Open village' for dementia residents

Published on Aug 18, 2014 11:24 PM
 
Instead of locking dementia patients up and drugging them silly, we could offer them a safe and near-normal home environment, in the style of the Dutch “open” dementia village De Hogeweyk, where health-care workers don’t don nurse uniforms or white lab coats, and residents are free to move around and carry on with daily activities. -- BH FILE PHOTO

It is estimated that by 2030, there will be about 80,000 Singaporeans aged 60 or older who will have dementia. This is a condition that involves an irreversible degeneration of the brain. It robs the patient of his mental processes of knowing, reasoning, and judgment as well as his memory and personality.

As the condition deteriorates, he becomes unable to care for himself. Over time, he may no longer recognise loved ones as well.

In his 2011 National Day Rally speech, Prime Minister Lee Hsien Loong said the Government would do more for Singaporeans with dementia. In this season of National Day celebrations, I hope specifically that a part of the $8 billion Pioneer Generation Package can be used to build a special health-care facility for people with severe dementia.

This could be modelled on the Dutch "open" dementia village called De Hogeweyk. Funded by the government, this is a village-style neighbourhood for elderly residents with severe dementia that was purpose-built in the small town of Weesp, near Amsterdam. This compact, self-contained village occupying land about 21/2 soccer fields in size is made up of smart two-storey brick buildings with a minimarket, cafe, restaurant, hairdressing salon and theatre. Opened in 2010, half of the village grounds consists of open communal space, with wide boulevards, side streets, town squares, manicured lawns and well-kept gardens.

There are 23 houses, with one double room and seven single rooms each. Six or seven residents occupy each house, along with one or two caregivers.

Each of the 152 residents has his own large bedroom while the kitchen, lounge and dining room are shared with other residents in the house. Grouped together with people of similar background, interest and values, the residents - never "patients" - are enabled to live like they always have but with meticulous supervision behind the scenes.

They are cared for by about 250 health-care workers, along with some volunteers, who wear street clothes to pose as sales people, domestic workers, housemates and neighbours. There are no nurse uniforms or white lab coats around, the residents decide where they want to go or what they want to do for the day - but workers are there to accompany residents all the time.

Although dementia patients have the urge to roam, there are no locked doors here - the village's gated and fenced perimeter ensures that they can do so without getting into harm's way. And workers are always there to lead them home if need be.

In what is essentially a staged normality to give the residents a semblance of daily life, the staff are always there to bathe, clean and cook for them.

The staff also arrange activities from baking or painting to cycling or bingo.

The idea is that dementia patients suffer less if they keep active. The minimarket, cafe and so on allow them to keep up daily routines such as shopping, sitting around coffee to chit chat, going to the hairdresser, and so on. They don't actually pay for their purchases: The upkeep of the whole village is funded by state health insurance. Residents who are able are also encouraged to cook and do the laundry with one another or with help, if need be. They stay as independent and active as they possibly can.

While this self-contained world is only a hyper-reality, the residents are told truthfully, should they ask, that it is a place where their condition is being managed. Because short-term memory is very poor in severe dementia, residents who do ask soon forget the answer anyway. It is as close to normality as possible. There are no bedridden patients. Instead, they are up and about, being more active and taking less medication than is usual in nursing homes.

Dementia is usually regarded as a biomedical problem lodged within the individual that makes him unable to take care of himself. This biomedical problem is seen as the cause of various problems in behaviour, which are really just a way the patient uses to express the distress he feels. These behavioural problems are symptoms, but doctors fix those symptoms by using psychotropic drugs to sedate the patient. This is why patients in a traditional dementia ward are typically quiet, torpid and not meaningfully engaged with the surroundings. While convenient for caregivers, it isn't optimal for patients.

If those behavioural expressions of distress are seen instead as indicating the existence of unmet needs, then the patient-centric solution might involve modifying patients' care environment to meet those needs. If this is done, then there might be less of a need to drug the patient.

Perhaps we should re-imagine the cause of the behaviour problems in dementia as being located not in the patient but at the intersection of the individual and his care environment. This might help us to begin to see the cause of his distress as being more social than biomedical in nature.

If so, the solution is not the anonymous dementia ward run by health-care workers in uniform, where antipsychotics are used freely to tamp down behavioural problems while bars and locked doors fight the tendency of dementia patients to roam.

Instead of locking them up and drugging them silly - this clearly dehumanises dementia patients - we should modify their care environment.

A Hogeweyk-style facility would offer residents a safe and near-normal home environment. It would relieve the anxiety and confusion caused by a sterile clinical environment with unfamiliar people, especially uniformed health-care workers, around them. Residents would be kept active and engaged. They would continue to do the things they can.

When we view the patient as mere pathology, we trivialise his life. When we view him as the same person he always was, but who has lost his memory for some things, we may see that what he needs is to be put back where he always was - in the embrace of webs of human relationships.

The Hogeweyk approach allows patients with severe dementia to continue to embed and anchor their lives within human relationships but in a safe environment. It's the right way to treat them with respect and dignity till the end of their days.

andyho@sph.com.sg

Background story

Perhaps we should re-imagine the cause of the behaviour problems in dementia as being located not in the patient but at the intersection of the individual and his care environment.