The Bus Stop to Nowhere

[Zeevee1103]

I came across a couple of articles about the building of fake bus stops in dementia wards or care home. The idea was to tackle the idea of wandering. When in a fit of confusion, they feel suddenly disoriented from their surroundings and wracked with a need to get home. That single idea has since changed care at the senior center–the nurses now lead patients back from “other worlds” by allowing them to explore the conceit rather than trying to convince them otherwise.

Is there more to the idea of familiarity? That soots and calms people with dementia wandering instead of standard solutions like locking up doors.

Are there other examples you know about with different counter behaviour, such as hoarding, aggression, repetition, etc., in the early to middle stages of the disease?

 

[Grannie G]

I don`t know how I feel about this @Zeevee1103

With the best will in the world I imagine some poor soul waiting for a bus that never comes.

 

[Sarasa]

My mother’s care home has a lovely Harry Potter themed railway station. I guess the idea is it looks like the sort of place the residents would remember from their earlier days. I’ve never seen anyone in it. Or have a clue how it could be used to stimulate old memories. My mums previous home had random objects such as clothes pegs around and they seemed to promote more discussion. Certainly mum enjoyed trying on the random hats available.

 

[Jaded'n'faded]

There's a place I heard about in Europe - Scandinavia I think - where people with dementia lived in a small, purpose-built 'village' centred around an old fashoined village street, with little shops and a cafe. There was also a park, duckpond, etc, etc.

It looked brilliant. The clip I saw showed happy people wandering around the village or riding little 'golf carts'. But I noticed that each was accompanied by one or two carers. And that's the problem really. Very few care homes can offer one-to-one supervision all the time as they are rushed off their feet just feeding, changing or moving their residents.

I think all these ideas are great in principle and would certainly be of benefit to those in the early/mid stages of dementia but I just can't see how it's possible in the real world, where costs are already very high and staff shortages prevail.

I think you also have to take into account the limited time value this sort of 'scenery' has. Inevitably as dementia progresses, people engage less, understand less and are often less mobile too. The reason the stereotyped image of care homes exists, i.e. a bunch of immobile, very frail oldies arranged in wing chairs around a TV that no one is watching, is because - to put it bluntly - that's how most people with dementia end up. I don't think any amount of bus stops, hat shops or pretty gardens can change that.

 

[nitram]

There's a place I heard about in Europe - Scandinavia I think - where people with dementia lived in a small, purpose-built 'village' centred around an old fashoined village street, with little shops and a cafe. There was also a park, duckpond, etc, etc.

This one is in the Netherlands

The Hogeweyk Dementia Village ~ Care concept

The Hogeweyk (part of The Hogeweyk care centre. A weyk or wijk being a group of houses, similar to a village) is a specially designed village with 27 houses for 152 dementia-suffering seniors.

hogeweyk.dementiavillage.com

 

[Palerider]

I came across a couple of articles about the building of fake bus stops in dementia wards or care home. The idea was to tackle the idea of wandering. When in a fit of confusion, they feel suddenly disoriented from their surroundings and wracked with a need to get home. That single idea has since changed care at the senior center–the nurses now lead patients back from “other worlds” by allowing them to explore the conceit rather than trying to convince them otherwise.

Is there more to the idea of familiarity? That soots and calms people with dementia wandering instead of standard solutions like locking up doors.

Are there other examples you know about with different counter behaviour, such as hoarding, aggression, repetition, etc., in the early to middle stages of the disease?

Hmm I'm not sure wandering is always a need to 'get home', and the term wandering perhaps isn't the best one to use. Sometimes it can be because the PWD has decided they are off to visit someone (long gone) or an unaddressed need. The reality is that as dementia progresses no one really knows what the PWD may be thinking or experiencing -in many ways we can only guestimate. My mum last weekend had stopped at one of the fire exits and she was glaring at the wire in the fire resistant glass and admiring the square patterns and at the same time from nowhere came a few words I understood -she was off to see her mum. She stayed there for some ten minutes before I could persuade her to come with me to see her new chair. Vision is also affected in advancing dementia, so images can be reassuring but also the opposite depending on how some ones vision is. My mum has a double whammy in that she has bilateral cataracts and is becoming slowly blind -but it doesn't stop her using her walking stick to shuffle purposely to where she wants to be and she seems quite content on her shuffling journeys. One thing that we have learned and this may be specific to my mum is not to try and stop her -this distresses her.

 

[Jaded'n'faded]

This one is in the Netherlands

The Hogeweyk Dementia Village ~ Care concept

The Hogeweyk (part of The Hogeweyk care centre. A weyk or wijk being a group of houses, similar to a village) is a specially designed village with 27 houses for 152 dementia-suffering seniors.

hogeweyk.dementiavillage.com

Aaaah! It's so lovely! Gives the impression of a happy ending with dementia though, doesn't it?

I'm trying to relate what I see in those pictures to the posts I read here on TP. In the village I see people who are self-determining, clean and well-dressed, not supervised and fairly able-bodied. Do they actually have severe dementia as the captions say? Here on TP, it seems people are continually anxious and/or fearful, need constant supervision, dislike or behave badly in social situations, spend all day phoning loved ones and all night wandering or looking for dead family members, won't eat properly or look after themselves, etc, etc.

That's a major disconnect for me.

 

[nitram]

That's a major disconnect for me.

Ever heard of 'living well with dementia'??????????

 

[Zeevee1103]

This one is in the Netherlands

Thank you for the reference link! The lovely and thought-provoking project challenges our traditional thinking of the model of care and how care should look. Often we attempt to resize their world, removing the choices that might pose a danger to them. Yet in this transaction, we cede their freedom to gain a sense of security—theirs, but also ours. The risks of institutional dehumanisation are just as profound as the physical dangers of cutting one’s hand.

 

[nitram]

It's interesting to note that in the video the speaker claims that the village is funded by the normal government amount for a care home.

 

[kindred]

Aaaah! It's so lovely! Gives the impression of a happy ending with dementia though, doesn't it?

I'm trying to relate what I see in those pictures to the posts I read here on TP. In the village I see people who are self-determining, clean and well-dressed, not supervised and fairly able-bodied. Do they actually have severe dementia as the captions say? Here on TP, it seems people are continually anxious and/or fearful, need constant supervision, dislike or behave badly in social situations, spend all day phoning loved ones and all night wandering or looking for dead family members, won't eat properly or look after themselves, etc, etc.

That's a major disconnect for me.

Thank you Jaded. I do so appreciate your posts. I have just returned from a volunteering shift in a nursing home for severe dementia. It is a good, loving active place. This morning the wandering, the repeated demands, the aggression, the shouting, the screaming, the undressing, et etc … almost hit my pain threshold. The nurses are fantastic.

 

[Jaded'n'faded]

It's interesting to note that in the video the speaker claims that the village is funded by the normal government amount for a care home.

Let's be honest, if all our loved ones with dementia could be relocated to lovely little villages like this, they'd all benefit I'm sure.

I can't see social services funding it though. And who would build the villages? Private companies? If so, they'd want a good return on their money I think. Cloud-cuckoo land - it's not going to happen. Let's not forget, in 20 years there will be twice the number of people over 75 as there are now. Where are we going to put them all? (Including me!)

Sorry - I am cynical and jaded. (And most definitely faded.)

 

[nitram]

Let's be honest, if all our loved ones with dementia could be relocated to lovely little villages like this, they'd all benefit I'm sure.

Especially as there would be daily access to phycologists, psychiatrists, and other medical specialists.

 

[Jaded'n'faded]

I bet they get all sorts of regular check-ups and monitoring - that's stuff most people in the UK can only dream of.

 

[nitram]

I bet they get all sorts of regular check-ups and monitoring - that's stuff most people in the UK can only dream of.

Not only monitoring by testing, also the invaluable assessment by daily observation.

 

[Weasell]

It's interesting to note that in the video the speaker claims that the village is funded by the normal government amount for a care home.

Also the speaker talks about the volunteers working there.
Volunteers means unpaid to me.

If UK care homes could be staffed with unpaid carers able to offer one to one support free of change, then Uk residents could decide they wanted to go to local pub at a minutes notice, and all be swept off to enjoy a wonderful pint.

I would love to drill down on information they don’t want to give you. Do you get a place in the village if you don’t bring a volunteer with you? Or was that farm hand, in reality the only pauper in the village?

 

[Palerider]

Holland has long had these types of schemes and there is even one where students live with older residents which works very well. The issue is not the idea but funding and as @Jaded'n'faded rightly points out the UK is too tight fisted to contemplate how money should be spent to improve the lives of people with dementia, remembering those of us now also have a vested interest -just in case. The way how dementia care is funded and how these profits are scooped off means the UK will never see anything like the projects in Holland.

I am becoming deeply concerned at how there is a growing interest in the use of volunteers not just in social care but the NHS as well -another sign by recent announcements that health and social care can be done even cheaper rather than address the big issues that we all have a vested interest in -soon we will have lay people managing complex problems which will only add to the never ending list of unresolved complex problems and then we will be in an ever twilight cycle of 'problems'

 

[Banjomansmate]

Aaaah! It's so lovely! Gives the impression of a happy ending with dementia though, doesn't it?

I'm trying to relate what I see in those pictures to the posts I read here on TP. In the village I see people who are self-determining, clean and well-dressed, not supervised and fairly able-bodied. Do they actually have severe dementia as the captions say? Here on TP, it seems people are continually anxious and/or fearful, need constant supervision, dislike or behave badly in social situations, spend all day phoning loved ones and all night wandering or looking for dead family members, won't eat properly or look after themselves, etc, etc.

That's a major disconnect for me.

My thoughts exactly!
No matter who is funding it, advanced dementia doesn’t look anything like that to me.

 

[LLHFG]

I came across a couple of articles about the building of fake bus stops in dementia wards or care home. The idea was to tackle the idea of wandering. When in a fit of confusion, they feel suddenly disoriented from their surroundings and wracked with a need to get home. That single idea has since changed care at the senior center–the nurses now lead patients back from “other worlds” by allowing them to explore the conceit rather than trying to convince them otherwise.

Is there more to the idea of familiarity? That soots and calms people with dementia wandering instead of standard solutions like locking up doors.

Are there other examples you know about with different counter behaviour, such as hoarding, aggression, repetition, etc., in the early to middle stages of the disease?

Am not sure about this generally @Zeevee1103 early on in Mum's journey with dementia/then: delirium she was in a care home with a 'ticket office' next to the locked door of the unit. Complete with cheerful uniformed railway officer and bell. We weren't able to visit at the time due to Covid and only later realised this was the reason for many confused phone conversations about journeys and being stuck without being able to get a bus/train/boat/ back home.

Can see this could work for some but actually increased the agitation/nightmare state Mum descended into - if you are desperately trying to cling on to your reality is it right for the environment to conspire against you? Am not so sure.

 

[Jaded'n'faded]

Good points @LLHFG

There is also the danger that we smugly think we know what a person with dementia wants in terms of environment and what would make them happy when really we're just guessing or going on anecdotal evidence. I looked at the pictures and thought 'Yes - I'd like to live somewhere like that if I got dementia.' But would I?

Perhaps it's like when we first start looking at care homes. We see the posh ones with the cinema, bar and nice grounds and think, 'Yes! Mum would love that!' It's often not till later we see beyond the dressing and realise that it's all about the care not the decor. My mother spent her 3 years in a care home in her room. She didn't want to come out or join in with anything. So if I'd moved her to an English Dementia Village (if such a thing existed) like the one in the Netherlands, that would have seriously backfired! With hindsight, I really don't think anything would have made her happy - dementia made that impossible. I tried to do the best for her but for all I know she may have been happier in a padded cell drugged to the eyeballs. At least that way she wouldn't have suffered the fear, anxiety and paranoid delusions that were so much a part of those last years. Who knows?