Design Project - Investigating stigma around dementia

[bayliss_design]

I am a 4th year design student at Loughborough university, and as a part of my studies I am investigating into the area of how I can destigmatise medical devices and supportive technology, with a specific focus on dementia patients.

As an initial and very rough area of research, it would be great to hear some people's experiences with dementia and if you felt any stigma or shame around the subject, either as a carer or a patient.

I would love to design some sort of product that could streamline the home adaptation process for when a patient needs some supportive aids around the home to help them, and I was wondering if anyone is feels frustration towards the products that are used to make the home more dementia friendly, or whether people are generally just glad of the assistance.

Any response is really helpful, and it would be great to open up some discussion with people, as my goal is to create something genuinely useful.

Thanks again,
Bayliss

 

[Jaded'n'faded]

There is a heck of a lot of stigma around dementia. People are scared of it and don't know how to deal with it (including some carers.) Often, friends disappear because they don't know what to say and just can't handle it.

One of the reasons for this is that the media still likes to show how great life can be with dementia, i.e. a happy smiling, engaged old person with their happy smiling carer. Unfortunately the reality for most people is nothing like that. Dementia behaviours can be pretty awful, often embarrassing and difficult to deal with. I'm thinking here about things like being up (and needing attention) at all hours, lack of personal hygiene (including incontinence all round the house and associated mess/smells) inappropriate shouting and arguing, outrageous accusations, delusions, halluinations, etc.

If you could put a positive spin on such things that would be great. But I'm not sure it's possible.

Re. products to make the home more dementia friendly, there are some obvious things like a downstairs bathroom or grab rails. Some people even find their person with dementia can appreciate Alexa and similar devices in the early stages. But generally what people need is more human care, increasing to 24/7.

 

[lemonbalm]

I think all the mobility aids (not just for people with dementia, obviously) all look so flippin' awful - so institutional and unappealing. My mum has a three wheeled walker now but, before that, when she only needed the support of a stick, I could only persuade her to use a pretty flowery one I bought online. Quite right too. Why shouldn't she have things that look nice? My father would only use a hill walkers' stick and that's fine too. It gave him some dignity instead of making him just look old and infirm, someone to pity.

I understand that this stuff needs to be reasonably cheap and mass produced, as much of it is provided by the NHS, but a bit more effort and imagination put into the design and look of them might encourage people to actually use them. Extra encouragement is so often needed with people who have dementia and things looking nice or inviting is, I think, tremendously important.

Nobody wants their home, (I'm including care homes here) to look like a hospital ward. I'm probably asking too much but at least I've got it off my chest.

 

[Whisperer]

Dear @bayliss_design

Let me start by saying thank you for your efforts in this field. I am sure there were perhaps easier projects you could have chosen.

Regrettably @Jaded'n'faded is quite correct about the level society in general just does not getting Dementia. I had a recent brush with medical staff regarding my mum’s health. The level of incomprehension about Dementia just brought a smile to my mind as behind the professional was a wall poster stating the practice was “Dementia Friendly”. Asking why my mum sometimes engaged in irritating unhelpful actions, I thought how do I explain to a person who works in an organisation supposedly versed on the issue to a degree. My experience is society does touchy-feely Dementia, but only for short periods. Once reality kicks in there is usually bafflement then a rush for the door. Not everyone. If they have direct experience of Dementia that helps a lot.

The above said I think very few Carer’s will ever feel shame in respect of their loved one. Might have to apologise at times, explain to neighbours and friends, etc, but no shame. People feel no shame when a loved one gets cancer, so why do so over Dementia. I can only definitively speak for myself but shame plays no part in my carer role.

Now as regards your project that is a tougher question than you may realise. Please remember what marks out most Dementia sufferers is reducing memory capacity at some stage in their illness. So introducing new aids as they get progressively worse is always problematic. As mentioned previously care needs grow so in fact it is the carer who engages the aid on behalf of the Person with Dementia (PWD)

The prior mention of colour by @lemonbalm is an important point. I would further suggest an attempt to smooth rough edges. Simple example is why do Zimmer frames have hard edges everywhere, often metal surfaces cold to the touch. The PWD will likely lose their long term memory after the short term memory. They will look at an aid through the eyes of someone who over the years saw others using such things and think old person. A walking frame with colour but also where possible some softer edges will look better. Hand rails seem to come in regime pine with brass wall supports. Could you think of a way to make them meet their purpose, but blend more into a home environment, not appear almost institutionalised.

I think you will find your task quite challenging. That said I close in thanking you again. Any steps which helps PWD is welcome in my mind no matter what the field. Be clear Dementia is not all living well with the illness, most carers are stressed and busy, frequently having to fight a system supposedly there to help them. Sometimes we are so busy we forget to say thank you when an offer of indirect help for the future comes along. I wish you well in your efforts.

 

[bayliss_design]

There is a heck of a lot of stigma around dementia. People are scared of it and don't know how to deal with it (including some carers.) Often, friends disappear because they don't know what to say and just can't handle it.

One of the reasons for this is that the media still likes to show how great life can be with dementia, i.e. a happy smiling, engaged old person with their happy smiling carer. Unfortunately the reality for most people is nothing like that. Dementia behaviours can be pretty awful, often embarrassing and difficult to deal with. I'm thinking here about things like being up (and needing attention) at all hours, lack of personal hygiene (including incontinence all round the house and associated mess/smells) inappropriate shouting and arguing, outrageous accusations, delusions, halluinations, etc.

If you could put a positive spin on such things that would be great. But I'm not sure it's possible.

Re. products to make the home more dementia friendly, there are some obvious things like a downstairs bathroom or grab rails. Some people even find their person with dementia can appreciate Alexa and similar devices in the early stages. But generally what people need is more human care, increasing to 24/7.

I think this is a really important issue to try and help people understand the reality of the situation, this kind of media sugar coating of the issue is certainly something I will avoid contributing to at all costs!

I really appreciate this insight - you mention the usage of things like Alexa and other home assistants... this kind of technology is something I would most likely be looking to integrate, do you feel that voice commands are useful, or is there a risk they could become a factor that contributes to further unsettling feelings for the patient?

Thanks so much for your insight - this reinforces the initial direction that I was hoping to move in with my project, so I this has been a positive read and a good way to start my week!

The main focus of the next week or so will be investigating what kinds of forms and shapes would be more accommodating and less stigmatising, (even if only in the mind of the PWD) I was wondering if you have any pointers for research or just anecdotal evidence that could start my search?

 

[bayliss_design]

There is a heck of a lot of stigma around dementia. People are scared of it and don't know how to deal with it (including some carers.) Often, friends disappear because they don't know what to say and just can't handle it.

One of the reasons for this is that the media still likes to show how great life can be with dementia, i.e. a happy smiling, engaged old person with their happy smiling carer. Unfortunately the reality for most people is nothing like that. Dementia behaviours can be pretty awful, often embarrassing and difficult to deal with. I'm thinking here about things like being up (and needing attention) at all hours, lack of personal hygiene (including incontinence all round the house and associated mess/smells) inappropriate shouting and arguing, outrageous accusations, delusions, halluinations, etc.

If you could put a positive spin on such things that would be great. But I'm not sure it's possible.

Re. products to make the home more dementia friendly, there are some obvious things like a downstairs bathroom or grab rails. Some people even find their person with dementia can appreciate Alexa and similar devices in the early stages. But generally what people need is more human care, increasing to 24/7.

I think this is a really important issue to try and help people understand the reality of the situation, this kind of media sugar coating of the issue is certainly something I will avoid contributing to at all costs!

I really appreciate this insight - you mention the usage of things like Alexa and other home assistants... this kind of technology is something I would most likely be looking to integrate, do you feel that voice commands are useful, or is there a risk they could become a factor that contributes to further unsettling feelings for the patient?

 

[bayliss_design]

I think all the mobility aids (not just for people with dementia, obviously) all look so flippin' awful - so institutional and unappealing. My mum has a three wheeled walker now but, before that, when she only needed the support of a stick, I could only persuade her to use a pretty flowery one I bought online. Quite right too. Why shouldn't she have things that look nice? My father would only use a hill walkers' stick and that's fine too. It gave him some dignity instead of making him just look old and infirm, someone to pity.

I understand that this stuff needs to be reasonably cheap and mass produced, as much of it is provided by the NHS, but a bit more effort and imagination put into the design and look of them might encourage people to actually use them. Extra encouragement is so often needed with people who have dementia and things looking nice or inviting is, I think, tremendously important.

Nobody wants their home, (I'm including care homes here) to look like a hospital ward. I'm probably asking too much but at least I've got it off my chest.

This is really genuinely useful insight, and has started to confirm my hunch, so i thank you for your reply!

My initial direction would be to create some form of mobility aid or supportive technology that sits within the home, designed to look far less like the hospital has come home with the PWD, and a little more like something the PWD is proud (or at least very comfortable) with having on their person

The technology integrated within could potentially help the user stay independent for longer, by making use of recorded reminders and prompts to complete daily tasks - without developing the idea too much at an early stage ( in order to avoid focusing too much on one idea at a very early stage in the design process) it would be great to hear your gut reaction to a device like this, and whether you believe that it could be genuinely useful, or jut more of an encumbrance

 

[Fullticket]

I absolutely agree with comments above but two things came to my mind regarding understanding and equipment.
First, I was at a meeting for carers where there was some promotion of aids for dementia sufferers. One of the items was a LARGE round clock. Dementia sufferers may have sight problems but they are not blind. The thinking was a LARGE clock would be noticed by the PWD. Unfortunately there were no numbers on the clock, just a line at 12, 3, 6 and 9. What occurred to me was that the PWD would not recognise this as a clock.
Secondly, there is the perception of dementia, even by professionals. I was advised by someone quite experienced in dementia care that a daily schedule on the wall would help (i.e. 8.30am shower, 9am breakfast, 10am leave to go to.... etc). So I duly did this for a few weeks. My observations were that the PWD did not read the schedule, if they did read it they didn't understand it and if they did understand it, they would forget it immediately. I overcame the problem of keeping everyone happy by buying a chalkboard with a picture of a cockerel at the top. Underneath the picture was a single word - four letters and signified the opposite of a hen. the social worker was happy, mum was non the wiser and I was very, very happy indeed.
Dementia is an all encompassing word for so many different conditions so it is not a one size fits all project that you are undertaking. Good luck.

 

[lemonbalm]

My initial direction would be to create some form of mobility aid or supportive technology that sits within the home, designed to look far less like the hospital has come home with the PWD, and a little more like something the PWD is proud (or at least very comfortable) with having on their person

I like your approach. Dementia can bring a loss of dignity along with it and anything which may help with that is to be welcomed. Using integrated technology is an interesting idea. I feel this could be a useful addition, particularly if it were something which could be added on or enabled/disabled by someone who knows the person that will be using the equipment, as it may work for some people at some stages and not others.

I'm glad to read that you are finding our feedback useful and look forward to hearing more about your project.

 

[bayliss_design]

I absolutely agree with comments above but two things came to my mind regarding understanding and equipment.
First, I was at a meeting for carers where there was some promotion of aids for dementia sufferers. One of the items was a LARGE round clock. Dementia sufferers may have sight problems but they are not blind. The thinking was a LARGE clock would be noticed by the PWD. Unfortunately there were no numbers on the clock, just a line at 12, 3, 6 and 9. What occurred to me was that the PWD would not recognise this as a clock.
Secondly, there is the perception of dementia, even by professionals. I was advised by someone quite experienced in dementia care that a daily schedule on the wall would help (i.e. 8.30am shower, 9am breakfast, 10am leave to go to.... etc). So I duly did this for a few weeks. My observations were that the PWD did not read the schedule, if they did read it they didn't understand it and if they did understand it, they would forget it immediately. I overcame the problem of keeping everyone happy by buying a chalkboard with a picture of a cockerel at the top. Underneath the picture was a single word - four letters and signified the opposite of a hen. the social worker was happy, mum was non the wiser and I was very, very happy indeed.
Dementia is an all encompassing word for so many different conditions so it is not a one size fits all project that you are undertaking. Good luck.

I think it is very important for me to be conscious of two points that this message has raised, the first being that sometimes even the most obvious nudges and reminders for people without dementia can seem bewildering or be easily overlooked by PWD, and the second being that there are many facets to the overarching condition of dementia, and I need to gain a greater understanding of the complexities of the illness.
I really appreciate the response, its incredibly helpful for me to have a resource such as this forum at my disposal, so thankyou again!
I am interested by the idea of introducing a jovial element into this solution - whilst it may not be appropriate for me to integrate the exact solution you have detailed above, the freedom that is brought by being able to personalise messages and reminders is something that could elevate the solution I create over and above the clinical depressing nature of many existing solutions - do you think there is value in the ability to customise and tailor reminders and prompts specifically for the PWD?

 

[bayliss_design]

I like your approach. Dementia can bring a loss of dignity along with it and anything which may help with that is to be welcomed. Using integrated technology is an interesting idea. I feel this could be a useful addition, particularly if it were something which could be added on or enabled/disabled by someone who knows the person that will be using the equipment, as it may work for some people at some stages and not others.

I'm glad to read that you are finding our feedback useful and look forward to hearing more about your project.

Fantastic news!
In an ideal world I will create a solution that has some level of modularity, or at least customisability - that is to say that a purchased device can be configured to best suit its specific PWD and their needs (how i will achieve this is what I will develop over the coming months).

If you have any input about any currently available assistive technology and the pros and cons of it, then that would be very much appreciated, and otherwise, I will keep this forum updated with my progress