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How Do You Design What You Don’t Know?
Exploring the potential for beneficial architecture in the field of dementia
words – craig stott, jérémy leclercq, joseph oates
location – leeds, england
Who do you design for, and why? Ethically, that should be your first question as anyone with a role in shaping our built environment. What is the responsibility of architects to design for those in need, those without a voice? More specifically, what of those living with dementia? By identifying current gaps in knowledge in the architectural field of dementia, we wish to explore what architects can do better – and, hopefully, understand what potential for research and problem solving exists when one is asked, ‘how do you design what you don’t know?’
We know dementia is an umbrella term for a group of long-lasting symptoms that get worse over time, progressively damaging the synaptic connections in our brain leading to reduced cognitive ability. Depending on the type of dementia, it can affect memory, judgement and decision-making. It can impair language and communication. It can cause confusion, disorientation, agitation and even aggression; trouble interpreting visual or auditory stimuli can lead to challenges with perception of surroundings and ability to place oneself within a physical context. A changing experience of time and space, difficulty recognising familiar landmarks or people and an inability to navigate our environment all hold the potential to induce fear and anxiety in those living with dementia.
There is growing interest in understanding the link between dementia and architecture, as evidence begins to show how the built environment has a significant impact on the mental health and physical wellbeing of those undertaking their dementia journey. Research by the University of Stirling identified the essential components of dementia friendly design, including incorporating familiar objects, simplifying inhabited environments, controlled use of lighting, colour and other sensory stimuli in ways that help navigation – thus promoting social interaction and reducing confusion. The research found such approaches can measurably improve quality of life for people with dementia, even reducing the need for medication.
As designers learn to adapt environments to accommodate potential changes in perception and sensory preferences of an individual living with dementia, it is crucial architecture also creates a supportive environment for caregivers, as this in turn improves quality of care and wellbeing. Design strategies aimed at allowing people with dementia to live comfortably in their own homes for as long as possible have shown promise in research studies and real-world applications. However, the success of these strategies depends on several factors: stage of dementia, individual needs/preferences of the person with dementia and the amount of support available. Where possible, community-based care provides a positive range of options for caring for people with dementia, helping to maintain quality of life and independence for as long as possible, whilst also supporting the needs of caregivers.
The link between dementia and architecture is an area of ongoing research, as designers, caregivers and policymakers seek to create environments that support the needs of people with dementia and promote their health and wellbeing. Several gaps in knowledge remain: from the role architecture itself plays in dementia, to how environments for dementia care are best designed for the many whilst addressing individual preferences and needs such as cultural diversity, autonomy and advocating agency. While there is considerable evidence on the impact of specific design features for problems associated with dementia, the link between the quality of the built environment and quality of life for people with dementia is largely unexplored. To begin to address this, this article briefly poses five questions, each relating to a much larger area of research requiring investigation.
1. HOW DO YOU ADDRESS SPECIFIC NEEDS AND PREFERENCES FOR THE MANY, WHILST ENABLING CULTURAL INCLUSION?
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. How do you singularly design for many individuals and their own personal preferences, cultural nuances and unique challenges?
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.
How do you design for cultural heritage, which is an integral part of self-identity, alongside necessary considerations for those with Alzheimer’s disease and other dementias? How are gender, culture, religion and sexuality accommodated and interacted with, particularly in a care setting? Seemingly simple choices of layout, colour, materials, language and symbols can all mean something different to an individual dependent on cultural background.
For people with dementia, the significance of familiarity cannot be understated – therefore, designing flexible spaces that can be adapted to different needs and reconfigured for different uses is paramount. Architects must incorporate furniture and fixtures that can be easily moved or adjusted, create opportunity for privacy or segregation, multiple entrances, and sequencing of spaces. If diversity is the mix of needs, inclusion is the culture of providing them.
A general understanding of effective design adaptations for supporting individuals with dementia exists, but how do we gain a better understanding of the specific, unique needs and preferences of individuals and their own cultural distinctions? Architects need to design houses, public buildings and entire cities with a full understanding of the ever-changing cognitive difficulties people with dementia face every day, alongside their own personal lived experiences and backgrounds. It his only with this knowledge designers can learn to support those living with dementia, and their carers, to lead fulfilling, independent lives.
2. HOW DO YOU DESIGN AUTONOMY AND USER AGENCY INTO A SAFE ENVIRONMENT?
Designing for conflicting needs is always a challenge, perhaps none more so than when a freedom to roam might sit at odds with safety, but it is necessary for promoting self-determination and quality of life for those with dementia. The balance is to promote autonomy whilst simultaneously providing support and resources to help people make informed decisions and manage risk.
The ethical implications of designing for dementia care is currently the most overlooked research area. How do architects promote a sense of respect and self-worth through autonomy, and dignity, whilst maintaining the rights of an individual with dementia, and crucially their caregivers? This is of genuine importance to everyone in society, as over half of the UK population know someone with dementia, and numbers are expected to more than double by 2050.
Promoting privacy and dignity is fundamental to designing user agency. This means permitting users a sense of control over their environment, particularly in spaces where people may be vulnerable or exposed. This is achieved by involving users in the design process and incorporating their feedback and perspectives to design spaces that offer users a sense of discretion and security.
Agency can be a powerful tool for empowering users. It gives them a sense of control over their environment through adjustability and customisation. Furthermore, social connections can, in themselves, promote dignity. Designing spaces that facilitate social interaction and connection can therefore help create a sense of community and belonging among users.
The Alzheimer’s Village in Dax, France, by NORD Architects offers choices as a central element of promoting autonomy. The design allows residents to move independently through a series of buildings and 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. How can architecture support this to create a culture of respect and dignity where people feel safe to express themselves and share their thoughts and ideas without fear of judgement or discrimination? In a world where safety encapsulates not just the physical but also the cerebral, such a space is essential for promoting freedom and autonomy.
3. HOW DO YOU DESIGN FOR ENHANCED EXCHANGE BETWEEN DESIGNERS & USERS?
As our understanding of dementia changes, so our practices and facilities for care will need to transform accordingly. This requires continual constructive dialogue between architects and building users through the design phase, hand-over and in-use stage, possibly resulting in the perpetual redesign and enhancement for the myriad of involved participants.
One opportunity to test ideas is through short-term flexible care facilities such as the Alzheimer’s Respite Centre by Níall McLaughlin Architects in Dublin, Ireland. Ever changing inhabitants enable a feedback mechanism to help improve design development, with the possibility for continual adaptation. The notion can be expanded to the repurposing of existing buildings, asking how they can be adapted, and how their original functionality can support alternative programmes and changing needs.
This is achieved by setting up communication systems that can be used by people with a wide range of abilities and disabilities, who speak different languages or have different cultural backgrounds. Using visual aids like infographics or diagrams can improve the effectiveness of communication and help to convey complex information in a clear and concise way.
4. HOW DO YOU DESIGN ECONOMICALLY VIABLE DEMENTIA CARE?
As the importance of dementia specific care becomes better understood, the economic and practical constraints limiting designers and caregivers from implementing effective design interventions remain. Globally, it is estimated that costs of treating dementia will increase from £1 trillion in 2018 to £2 trillion in 2030. How do we design dementia care in a way that is economically feasible and practical to implement?
In general, care models should be designed based on the latest research and best practices, using data to evaluate the effectiveness of care delivery and identify areas for improvement. Specific solutions require economic viability designing, 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. Incorporating community resources can help reduce these costs and improve quality of life for people with dementia and their carers. This is 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.
5. HOW DO YOU MEASURE THE EFFECTIVENESS OF YOUR DESIGN INTERVENTION?
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, therefore, remains: how do we measure the effectiveness of design interventions, and how do we implement the findings of research already conducted?
Different ways to measure the effectiveness of a dementia treatment exist, depending on the goal of the treatment and an individual’s specific symptoms. It can be measured via cognitive assessments [testing memory, attention, language and executive functions], behavioural assessments [changes to agitation, aggression or depression], or brain imaging [such as MRI or PET scans]. Alternatively, narrative accounts from those with dementia, their family and caregivers can provide valuable insight into the effectiveness of a treatment, environmental change or design decision – particularly if qualitative feedback is gathered both before and after any changes. Ultimately, the effectiveness of any dementia treatment is determined by improvement in an individual’s symptoms and overall wellbeing.
Designing appropriately for those living with dementia is difficult, with this article articulating a number of key challenges. It is clear, however, that there is room for more – and better quality – research, as all five points identified in this article, if designed appropriately, could help stem the advance and impact of dementia.
According to Alzheimer’s Research UK, dementia is the number one health condition people fear most. Finding a cure, as well as architectural answers to accommodating those affected by dementia, remains one of the UK’s top research priorities. There is no doubt a strong consensus of opinion on the features of appropriate care design, but an examination of the literature quickly leads to the conclusion that little is certain. Therefore, as well as encouraging new research, it seems sensible to examine how current research is being applied and, if not being applied routinely, to investigate the obstacles preventing this so they might be overcome.
Much needs to be done, quickly, and with good reason as approximately 25% of UK hospital beds are taken by people living with dementia. As we look to care for these individuals in more suitable surroundings, designers and architects need to ask themselves: how do you design what you don’t know?
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