Twitter dialogue: How Do You Design What You Don’t Know?
Recently, we invited Leeds Beckett/ Project Office’s Craig Stott to lead an interactive Twitter discussion to explore how we better design our built environment for those living with dementia. We were delighted to be joined by a selection of current architecture students, recent graduates and industry insiders with lived experience of dementia – a vital part of any such conversation. An insightful discussion was had, played out interactively across Twitter in real time. Exclusively for our members who missed the event, we’ve pulled together the conversational highlights for you to read back.
Leeds Beckett Project Office
Thanks @boom_saloon! We’re really happy to be asked to contribute to this super important topic discussing how we transform our dementia care.
To start then, Project Office is a design and research collaboration of staff and students @leedsbeckett university. It is an architecture consultancy making ethical, social and resilient architecture. We work with like-minded communities, organisations and individuals.
@_projectoffice is part of @LBU_LSA & @LeedsBeckMArch where we attempt to drive a wider conversation about architecture’s role in communities and society over and above simply designing buildings.
This year, through our teaching, we focused on the idea of university’s as Anchor Institutions. This led to one brilliant undergraduate student @josephoates0 / @_JOates to consider dementia care.
Joseph Oates
Good afternoon, I’m Joseph Oates a graduating undergraduate student and was in Craig’s studio this year. When the brief was given, a focus on health care was the direction I wanted to go with, and having first hand experience with family members with dementia I felt it suitable
Leeds Beckett Project Office
Joseph’s drawings are those used in our article, which can be found here Joseph’s dissertation focused on dementia care, and became the basis of this piece, along with his design studio work
We were really fortunate to have @jeremyleclercq1 helping us write the article. Jeremy is one the last Erasmus students joining us and worked for @_projectoffice as part of his placement. Jeremy, over to you…
Jérémy Leclercq
Hi all, I am Jérémy and did my internship with @_projectoffice earlier this year. I had the chance to take part in the research and editorial of the article for boom_saloon alongside Craig and Joseph.
Gerald King
Hi, my name is Gerry, I am 60 years old. I was diagnosed with young onset Alzhiemers disease at the age of 55. My background is in architecture so I’m hoping to find this very interesting.
01_
how do you address specific needs and preferences for the many, whilst enabling cultural inclusion?
Gerald King
I was wondering if people with lived experience have been involved…ie those living with a diagnosis of dementia and their families.
Joseph Oates
Yes, I have a grandparent who is in the early stages of dementia, she struggles with her short term memory but is able to tell stories from years ago, so whilst it is upsetting to see her deteriorating, I feel I have gotten closer to her through the stories she tells.
boom saloon
One of our biggest learnings from collaborating with STAND has been to hold onto any positives dementia presents; hearing of your closeness through storytelling is a perfect example
Leeds Beckett Project Office
For our article Gerry, yes. Both @josephoates0 and myself have/had grandparents with dementia. The problem is connecting those living with dementia with the construction industry providing their care facilities. We feel academia could help bridge that gap
Gerald King
I would also suggest talking to the right people. There are 3 stages of dementia and people in the early stages are still more than capable of contributing
Jérémy Leclercq
Specific needs and preferences can be addressed via modular and adaptable design to respond to unique and changing preferences as well as cultural distinctions.
Leeds Beckett Project Office
Designing for specific needs and preferences of individuals requires a user-centric design approach that puts the capabilities and needs of the user at the forefront. Architecture currently doesn’t do this, it is too siloed. This is the challenge to overcome.
Designing for inclusion is the culture of accommodating and celebrating differences amongst people; allowing those with differing levels of ability, disability, age or impairments to inhabit and use a space by understanding their needs and preferences.
Potentially the largest challenge to inclusion is diversity; the visible and invisible mix of difference.
@leedsbeckett @BeckettResearch have a range of specialist researchers considering dementia, its impact, and potential cures. Our architectural responses need to start tapping into such knowledge
Gerald King
Here in Fife people with lived experience of dementia are encouraged to be involved in choosing types and colours of finishes for new build care homes
Leeds Beckett Project Office
That’s great, and familiarity is super important. I’d like to see us move further and incorporate end-user feedback into all aspects of spatial arrangement, organisation and building composition
boom saloon
Why do you think this doesn’t happen already?
@leedsbeckett @BeckettResearch have a range of specialist researchers considering dementia, its impact, and potential cures. Our architectural responses need to start tapping into such knowledge
Leeds Beckett Project Office
Architecture as a profession is quite insular, inward looking, it doesn’t connect well with the communities it attempts to serve. This is something we try to address in our teaching by exposing students to collaborators and encouraging true consultation
boom saloon
Great to hear that this is starting to change, albeit slowly – @GerakdK1063, we wonder your thoughts on this? Do you think it’s fair to say architecture is disconnected to community?
Gerald King
Having been involved in architecture all my working life I would agree with that comment.
02_
how do you design autonomy and user agency into a safe environment?
Leeds Beckett Project Office
There are some great examples. The Alzheimer’s Village in Dax, France, by NORD Architects being one. It offers choices as a central element of promoting autonomy.
What we realise is designs need to allow residents to move independently through a series of buildings/spaces comprising a range of options for activities, meals, daily tasks and choices about how they spend their time.
Encouraging participation and collaboration helps promote a sense of community and belonging while also promoting individual autonomy.
Jérémy Leclercq
One of the main challenges is to design for autonomy in a safe environment that provides support and resources to help people with dementia to make informed decisions and manage risk.
Not only NORD Architects’ “Alzheimer Village”, but also Niall McLaughlin’s “Alzheimer’s Respite Centre” are good examples.
03_
how do we design for enhanced exchange between designers and users?
Leeds Beckett Project Office
Exactly. With the three stages of dementia it is about connecting to the right people at the appropriate time. This includes family and caregivers in later stages, as the onus can be seen to impact those evermore and their input should be invaluable
Joseph Oates
When talking to @clairesurr from @LBUdementia she suggested it would be best to actually get in touch with people with/involved with dementia as it is the best way to understand individual needs whilst designing inclusively
Gerald King
Totally agree, if you needed advice from a plumber, you wouldn’t ask an electrician. Therefore if you need advice about designing for those living with dementia then just ask someone living with dementia.
Jérémy Leclercq
Not only when it comes to designing for dementia, but in general, the exchange between designer and user requires continual constructive dialogue for perpetual redesign, enhancement and adaptation.
Gerald King
Agreed however just because someone has dementia, doesn’t mean that they are not capable of contributing to the discussion
Jérémy Leclercq
This can be achieved through feedback mechanisms that can be used by people with a wide range of abilities and disabilities.
Joseph Oates
It was definitely the toughest part tackling a dementia related project, trying to really understand the delicate and individual needs as everyone is going to have unique experiences currently and from their past, and trying to cover as much as possible.
Gerald King
Although they say that everyone with dementia is different, the journey is very similar. Dementia does not just affect memory but also sight, hearing, mobility, taste, touch as well as loss of communication skills. Get it right for dementia you’ll get it right for many others.
boom saloon
This is so often the case, whereby dementia focussed interventions better the experience of all – something, we hope, which might further push this to the forefront of conversation
04_
how do you design economically viable dementia care?
Leeds Beckett Project Office
That is so important. It is estimated that costs of treating dementia will increase from £1 trillion in 2018 to £2 trillion in 2030. Covering for these costs is going to be key to providing high quality care
Specific solutions require economic viability designing In, to create sustainable care models that are cost-effective, efficient and adaptable.
For dementia this includes designing care models that can be easily adjusted to meet each individual’s changing needs, as well as staff requirements and demand-based numbers that can easily be scaled up or down.
The economic impact of dementia care in the UK was £25 billion in 2021, over 1% of national GDP. This is expected to rise to nearly 2.5% by 2050.
We think incorporating community resources can help reduce these costs and improve quality of life for people with dementia and their carers.
This can be achieved through partnering with community organisations and resources, such as local senior centres and volunteer organisations, to provide additional support and resources to individuals with dementia and their families.
Gerald King
This can be achieved through partnering with community organisations and resources, such as local senior centres and volunteer organisations, to provide additional support and resources to individuals with dementia and their families.
boom saloon
And so often there are small changes that can make a huge difference, and needn’t cost vast amounts; the challenge seems to be raising awareness of these.
05_
how do you measure the effectiveness of your design intervention?
Jérémy Leclercq
The effectiveness of a design intervention related to dementia can be measured via cognitive and behavioural assessments, brain imaging as well as (and maybe most important) narrative accounts from those living with dementia, their families and caregivers.
Leeds Beckett Project Office
Evidence exists to suggest certain design interventions improve outcomes for individuals with dementia, but most remain anecdotal. Rigorous research is required to establish the validity of any new intervention, in different contexts and with different populations.
A key question remains therefore: how do we measure the effectiveness of design interventions, and how do we implement the findings of research already conducted? At this point in time, we don’t think there is an effective solution for this.
Gerald King
Agreed, however being able to live at home with proper support, the healthier I will be, the healthier my family will be, I will not be a burdon on society and public funds, I will be surrounded by a local community that I am safe in and as currently, will support my family.
