The Dementia Village
May 22, 2017 07:58:04 #
The author, Giovanni Tiso is an Italian expatriate who has become a citizen of New Zealand. In this article he describes some new (to me) concepts in assisted living for the elders with Alzheimer’s disease. I don't know if anything similar has been done in the U.S. but it does appear to be a better approach than warehousing the patients. -- pafret
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The Dementia Village
When my grandmother developed Alzheimer’s disease, she started to get me confused with her son, who had moved to Brazil at what was then my age. As a result of this, and of the feelings of guilt she still harboured towards him, seeing me had the effect of making her anxious. It was only through conversation that she became calmer to the point where we could enjoy each other’s company.
Eventually I learned that the best course of action was not to correct her misapprehension, but rather to speak with my own voice and to tell her ordinary things about my life. I neither indulged nor rebelled against her fantasies. I let her talk about my grandfather as if he were still alive, and brought the conversation back to shared memories or concrete topics she could still grasp and express an opinion about. The success of this strategy was limited, but one day our conversation went so well I forgot about her illness, or even to keep an eye on the time. The visit ended with my having to literally run across the village to the railway station in order to catch the last train back to the city.
My grandmother’s daily self-care needs were very high, and it never occurred to us at the time that her rigidly segregated, hospital-like rest home might not be the best place for her to wait safely, and in relative comfort, for the end. In those same years, a group of Dutch caregivers began designing Hogeweyk, a village conceived to allow dementia sufferers to maintain a measure of autonomy and control over their environment. Structured around a series of template ‘lifestyles’ – ‘upper-class, homey, Christian, artisan, Indonesian and cultural’ – the group homes at Hogeweyk don’t confront residents with constant, jarring reminders of their illness, but rather encourage social interaction and participation. Other facilities that have been built since then, such as the Fartown village at Huddersfield in the UK, are modelled around 1950s housing and communal spaces, with meticulous attention to period detail.
What in other contexts may strike us as superficial, fashion-driven nostalgia, here serves the pragmatic purpose of keeping residents anchored to their psychological present – that is, to the time to which what is left of their memory most frequently returns. Residents of these facilities can go shopping (using fake money) in stores lined with generic, familiar products. They can walk the streets of the small grid-like quarters in safety, under the watchful eyes of cameras and plain-clothes nursing and security staff. At the Benrath Senior Centre in Düsseldorf, they can even wait at the stop for a bus that will never come.
The concept is highly suggestive, and routinely evokes comparisons to The Truman Show, Andrew Niccol’s sardonically dystopian story of a man condemned to live his life on a television set. In this case, the pretence is humane, as it seeks to restore (as opposed to suppress) agency, but the broader cultural reverberations are hard to ignore. Increases in life expectancy have caused dementia to reach epidemic levels, and many – if not most – families in the West are set to be affected by it as populations continue to age. But its effects are markedly different: for the sufferers, it sometimes takes the form of a long, almost gentle goodbye, the gradual taking of leave from the experiences and the relationships of a lifetime; for their loved ones, it is both heartbreaking and a burden. The duty to care for someone who can no longer recognise us, and increasingly be recognised by us for the person we once knew, is a heavy one. It can also be terribly hard to let go, to accept that the objective facts of our lives cease to matter when measured against the pain and disorientation that reminding can cause. For the families, then, it becomes an exercise in wilful amnesia: we learn to allow our elders to forget.
At the same time as individual lives are getting longer, exposing more people to dementia, our collective life as a species is getting shorter. It is the same progress that presides over both the medical advances and the frantic exploitation of the planet’s resources for present-day use, which threatens to erase the future altogether. Soon there may no longer be a past for anyone to remember, and ‘dementia villages’ like Hogeweyk will become indistinguishable from every other built environment. For now, however, their import is much more symbolic. Like my conversations with my grandmother, these special facilities make concessions to forgetting that our culture is generally unwilling to make so that what is left of experience can be salvaged and shared. They show us that memory can be a burden, too, and how to alleviate it.
Originally published at Overland
*********************
The Dementia Village
When my grandmother developed Alzheimer’s disease, she started to get me confused with her son, who had moved to Brazil at what was then my age. As a result of this, and of the feelings of guilt she still harboured towards him, seeing me had the effect of making her anxious. It was only through conversation that she became calmer to the point where we could enjoy each other’s company.
Eventually I learned that the best course of action was not to correct her misapprehension, but rather to speak with my own voice and to tell her ordinary things about my life. I neither indulged nor rebelled against her fantasies. I let her talk about my grandfather as if he were still alive, and brought the conversation back to shared memories or concrete topics she could still grasp and express an opinion about. The success of this strategy was limited, but one day our conversation went so well I forgot about her illness, or even to keep an eye on the time. The visit ended with my having to literally run across the village to the railway station in order to catch the last train back to the city.
My grandmother’s daily self-care needs were very high, and it never occurred to us at the time that her rigidly segregated, hospital-like rest home might not be the best place for her to wait safely, and in relative comfort, for the end. In those same years, a group of Dutch caregivers began designing Hogeweyk, a village conceived to allow dementia sufferers to maintain a measure of autonomy and control over their environment. Structured around a series of template ‘lifestyles’ – ‘upper-class, homey, Christian, artisan, Indonesian and cultural’ – the group homes at Hogeweyk don’t confront residents with constant, jarring reminders of their illness, but rather encourage social interaction and participation. Other facilities that have been built since then, such as the Fartown village at Huddersfield in the UK, are modelled around 1950s housing and communal spaces, with meticulous attention to period detail.
What in other contexts may strike us as superficial, fashion-driven nostalgia, here serves the pragmatic purpose of keeping residents anchored to their psychological present – that is, to the time to which what is left of their memory most frequently returns. Residents of these facilities can go shopping (using fake money) in stores lined with generic, familiar products. They can walk the streets of the small grid-like quarters in safety, under the watchful eyes of cameras and plain-clothes nursing and security staff. At the Benrath Senior Centre in Düsseldorf, they can even wait at the stop for a bus that will never come.
The concept is highly suggestive, and routinely evokes comparisons to The Truman Show, Andrew Niccol’s sardonically dystopian story of a man condemned to live his life on a television set. In this case, the pretence is humane, as it seeks to restore (as opposed to suppress) agency, but the broader cultural reverberations are hard to ignore. Increases in life expectancy have caused dementia to reach epidemic levels, and many – if not most – families in the West are set to be affected by it as populations continue to age. But its effects are markedly different: for the sufferers, it sometimes takes the form of a long, almost gentle goodbye, the gradual taking of leave from the experiences and the relationships of a lifetime; for their loved ones, it is both heartbreaking and a burden. The duty to care for someone who can no longer recognise us, and increasingly be recognised by us for the person we once knew, is a heavy one. It can also be terribly hard to let go, to accept that the objective facts of our lives cease to matter when measured against the pain and disorientation that reminding can cause. For the families, then, it becomes an exercise in wilful amnesia: we learn to allow our elders to forget.
At the same time as individual lives are getting longer, exposing more people to dementia, our collective life as a species is getting shorter. It is the same progress that presides over both the medical advances and the frantic exploitation of the planet’s resources for present-day use, which threatens to erase the future altogether. Soon there may no longer be a past for anyone to remember, and ‘dementia villages’ like Hogeweyk will become indistinguishable from every other built environment. For now, however, their import is much more symbolic. Like my conversations with my grandmother, these special facilities make concessions to forgetting that our culture is generally unwilling to make so that what is left of experience can be salvaged and shared. They show us that memory can be a burden, too, and how to alleviate it.
Originally published at Overland
May 22, 2017 08:14:29 #
May 22, 2017 08:23:05 #
no propaganda please
Loc: moon orbiting the third rock from the sun
Super Dave wrote:
Very interesting.
It sounds like an excellent idea. Wonder how well it would work here and whether the nurses unions and other related groups would fight the concept as it would give them less control of everything in the patients lives, and make them into people rather than patients.
May 22, 2017 08:23:54 #
no propaganda please wrote:
It sounds like an excellent idea. Wonder how well it would work here and whether the nurses unions and other related groups would fight the concept as it would give them less control of everything in the patients lives, and make them into people rather than patients.
I don't think that would be a problem.
May 23, 2017 10:55:51 #
bggamers
Loc: georgia
no propaganda please wrote:
It sounds like an excellent idea. Wonder how well it would work here and whether the nurses unions and other related groups would fight the concept as it would give them less control of everything in the patients lives, and make them into people rather than patients.
I am a nurse and have worked in nursing homes for 32 years and I think this is a great idea for all of the seniors
May 23, 2017 11:05:51 #
pafret wrote:
The author, Giovanni Tiso is an Italian expatriate... (show quote)
not sure if it would work here paf
would be great if it would
losing ones ability to recognize relatives and past life is a terrible thing
sessions with my mother in her last year
left me unashamedly crying
May 23, 2017 18:09:05 #
I read that increasingly people are retiring to doublewide trailer parks in the south. The buy in is inexpensive (compared to assisted living) with not as many rules as an association. The people get around in golf carts, have hospitals and shopping fairly close and mostly look out for each other. They become small communities. Mike
pafret wrote:
The author, Giovanni Tiso is an Italian expatriate... (show quote)
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