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To what extent do people with dementia have the right to have control over their own lives?

To what extent do people with dementia, even advanced dementia, have the right to have control and choice over their own lives?  This is the question raised by an experimental care facility in the Netherlands.

In Hogeweg, everyone lives in the moment.  As The Times reported on Saturday, the streets and squares of this experimental Dutch community, with its cafes, restaurant and hairdressers, have been carefully designed to reassure, some would say deceive, the 152 residents. Everyone who lives there has severe dementia and few either know or care that their village is a secure nursing home where the supermarket and restaurant are manned by specialists in the care of the elderly.

Hogeweg occupies a large self-contained, low rise block on the edge of town. There is only one exit, through a hotel-style lobby which prevents residents wandering off. Inside there is a  wide piazza with an ornamental fountain and a restaurant leads to a “high street” and several side roads, all with their own street signs and distinctive living areas. As there are no buses or cars, residents can come and go as they please. They leave their doors open and fill up trolleys with random items in the supermarket. If they get lost or confused, another “villager” (in reality a member of staff or a volunteer) is on hand to guide them home.

Each of Hogeweg’s 23 communal houses is designed in one of seven themed lifestyles based on detailed research into Dutch society: urban, Christian, upper class, homely, Indonesian, cultural and rustic.  Rather hauntingly, The Times reports the story of one person originally allocated an “upper class” house being relocated when it was discovered that she had worked in a cafe in the inner city in her early 30s and that was the part that was “really her”.

The organisers of Hogeweg reject comparisons with The Truman Show, the Hollywood film starring Jim Carrey, in which reality turned out to be an elaborate television set, but acknowledge that they have created an illusion. They prefer to compare it to a theatre. The frontstage is what the residents experience as real. This is their normal life where they can go to the supermarket or the hairdresser’s. “But backstage it is a nursing home.”

So is it acceptable to deceive people in this way?  Jeremy Hughes of the Alzheimers Society thinks not. Whilst he acknowledges that Hogeweg goes out of its way to make people with dementia feel comfortable and at home – and indeed the staff report people needing less medication and being calmer – he argues that “those providing care have a duty not to deceive or lie to the people they are caring for”. What do you think? Would it matter to you that your loved one was being to a certain extent deceived?

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