Psychological Design

Architectural Design Gives Hope for Dementia

The places people living with dementia (PLWD) live in, profoundly affect their happiness, behavior, the course of their ill-nesses and even the circumstances of their death. Environments that affect PLWD may start out as workplaces, public spaces or their own homes. But as dementia develops, residences often need to change to allow for increased levels of care. For the best part, greater levels of dependence mean greater institutionalization and often that means ‘residential homes’ – institutional substitutes for the real thing. The institutionalization associated with dementia means increased separation from families, communities, loves, passions, hobbies, familiar places and even their material belongings. An undignified last chapter for our parents and grandparents. People who, like the rest of us, have lived full and interesting lives. But what does this attrition of normal living circumstances do to PLWD? And what can architecture do to help?

This special issue of Architectural Science Review is dedicated to an exploration of evidence-based and theoretical approaches to designing for PLWD, with the understanding that architecture is not just the setting where care for PLWD will take place, but it is a critical part of the complexity that surrounds a dementia diagnosis.

This comes in contrast to the stubbornly extant paradigms of architecture for institutional care settings, where the decoration shifts with fashion and the architects’ ideas, but the core design is driven by the need for the efficient functioning of staff rather than the quality of life that the staff are there to support. Even in permanent residential settings, efficiencies made to improve the provision of care tend to make settings institutional, less liveable and possibly worse for dementia outcomes (Charras 2021; Zeisel 2020; Burke and Veliz-Reyes 2021).

Dementia is an umbrella term for organic neural deterioration disorders. The most common is Alzheimer’s Disease, which usually manifests as an inability to learn new things and remember new information; there are the Frontal Dementias, which are marked by personality and behavioral change. Other dementias present with other symptoms also. Regardless of the specificity of diagnosis, the dementias typically worsen with time to impair higher cognitive functions such as abstract thinking, judgement and verbal fluency. As dementia progresses, it frequently causes emotional and behavioral abnormalities also (Dowden et al. 2008) The progression of symptomatology, along with accidents at home are typical reasons for moving to an institutional residence in the first instance. CONTACT Jan Gombelewski jg@psychological.design. The relationship between the built environment and PLWD cannot be understated. According to WHO figures, In 2010, there were 35.6 million people living with dementia, a number that is expected to increase to 70 m by 2030 and to 135 m by 2050 (World Health Organization 2018). The numbers are enormous, but as yet, there are no pharmaceutical cures for dementia, meaning the medications that PLWD are given do little more than relieve some symptoms at best. But the built environment can do the same passively, without the side effects that haunt the psychotropic alternatives (such as the prominent adverse gastrointestinal effects associated with Alzheimer’s Disease medications or the increased risk of falls and death that are associated with the benzodiazepines that are used to manage mood and behavioural disturbances (Dowden et al. 2008)). So the search for non-pharmacological management strategies including evidence about how design affects people with dementia is far more critical than many experts feel qualified to acknowledge, with such knowledge sitting as it does in the margins of the clinical sciences. But environmental design for PLWDcan easily be highly problematic as it can exacerbate symptoms and cause frustration, just as it can be used to relieve symptomatology and provide a greater sense of dignity and wellbeing.

Not only will dementia manifest as a range of difficult symptoms, but it compounds the disabilities that already tend to worsen with age and poor health, including loss of perceptual and physical abilities. Universal design helps, but it usually serves only the most obvious physical requirements, such as wheelchair accessibility. Universal design is therefore important, but it’s only a singular thread of a complex system. Even with universal design, the architectural environment still easily exacerbates problems even as thoughtful design interventions can genuinely help, if only designers know how to harness the power of design to aid PLWD.

To address this need, this special issue introduces six perspectives, all of which point to hope for those who care about PLWD and their living circumstances. It comes at an important time for architectural innovation for dementia. This special issue of Architectural Science Review was conceived to accompany the World Alzheimer’s Association 2020 report: Design, Dignity, Dementia – dementia-related design and the built environment (Fleming, Zeisel, and Bennet 2020a, 2020b). The first volume of the report presents a case for environmental design as a tool for managing dementia at all levels, including recommendations for national dementia plans

© 2022 Informa UK Limited, trading as Taylor & Francis Group 2 J. GOMBELEWSKI and for international policymakers (Golembiewski 2022). The second volume is a sourcebook of 87 precedents from 27 countries. This special issue also follows the successful release of the Dignity Manifesto of Design for People Living With Dementia (https://designdignitydementia.com/manifesto-2), and includes a special editorial to introduce the readership of this journal to this effort (QV.). The manifesto approaches the subject of design for dementia as a subject that should be led by ambitious goals, values and principles, because the evidence for design is incomplete and wickedly complex, yet architects and other designers must press on and do the best they can, regardless. The signatories of the manifesto accept that there is a lot that architecture can do for PLWD, and that the process (even if imperfect) must embrace key goals and values and embrace certain principles in order that any new infrastructure maximizes the benefit for PLWD, their families, carers, and the entire ecosystem. The inclusion of authentic voices of PLWD in the design process is one of the values of the Manifesto. People make lots of excuses to exclude these voices because physicians and other carers can see PLWD as cognitively impaired and forgetful ‘collections of symptoms rather than as humans suffering with illnesses and burdens’ (Blass 2007, 546 cited in Francis and Murtha 2021), and therefore as distracting or unhelpful in a complex design process. But in this issue, Francis and Murtha (2021, QV.) describe the profoundly articulate insights that residents have, regardless of their symptomatology – including the extraordinary way they often anthropomorphize their natural surroundings and how they feel about the spaces and places that make the foundation for the rest of their lives. I believe no warm hearted architect can read this paper without feeling inspired to do better and push past the gravitational pull of institutional paradigms for residential care. The paper by Burke and Veliz-Reyes (2021, QV.) further challenges the normative assumptions the industry holds around what people with dementia, and what they read from their environs. The paper is empirical, using a grounded theory to discover patterns of behavior around their living environments. The paper uncovers the real experience of PLWD in the institutions that house them. Again, this paper finds that residents with dementia maintain a deep and insightful perspective of their environments. But Burke and Veliz-Reyes are also specific about why this perspective matters. In residential settings, spaces need to host a range of essential personal tasks that are too easily misunderstood or are ignored by designers and carers alike as they focus on institutional objectives such as cleaning or feeding residents. For example, the task of settling in and getting to know other residents is hindered by an institutional milieu, however nice and ‘homely’ it looks. People need to customize and take ownership of their spaces so they can slowly let others into their intimacy. When bedrooms are the only places that allow for customization and ownership (and some places don’t even allow that), the task becomes far more difficult because the contrast between the public living spaces and bedrooms (the only truly private spaces in most institutions) is far too great to bridge. People also need to customize their spaces so they feel comfortable and ‘at home’. Other design decisions affect basic human needs like enablement and the occasional need to do something other than the activities a room is designed for. These aesthetic decisions aren’t just about having nice wallpaper, comfortable seating, or even universal design: It’s about providing for personalization and for the joys and passions that the PLWD carry with them into the care setting. The paper by Charras (2021, QV.) is essentially a tool for designers. It’s a metaphor that turns the focus from residents experiencing a mysterious symptomatology to an analogy that enables some insight and empathy for residents in institutional care. Charras likens life in a residence to a long-haul flight, where people are obliged to remain seated, are fed institutional food and are provided with generic entertainment choices in a factory-like production line. Like passengers, PLWD are forced to coinhabit spaces with people with whom they have no association. Even in a plane, these circumstances make everyone somewhat stir-crazy and agitated, but for travelers, the journey ends in a few hours, whereas the journey relentlessly continues for people experiencing dementia. The World Alzheimer’s Association 2020 report: Design, Dignity, Dementia – dementia-related design and the built environment (Fleming, Zeisel, and Bennet 2020a) stresses the need to improve all environments for PLWD, including the general hospital environment (Grey, Xidous, and O’Neill 2020). In this issue, Kirch and Marquardt (2021, QV.) present a large-scale quantitative paper to prove the point. Dementia is commonly associated with comorbid illnesses, so hospital visits for people with dementia are common. But dementia is associated with poor outcomes in general hospitals – even for conditions that have little to do with dementia itself, if for no other reason than the loss of the ability to undertake rehabilitation and self-care. In this paper, 25 German General Hospitals are analyzed to reveal that even basic dementia-friendly design measures have an outsized positive effect on outcomes including significant improvement in patients’ self-care abilities. The paper concludes that specialist design for sections of general hospitals are effective, feasible and attractive. Kirch and Marquardt go further still to point to the potential of dementia-friendly design to shift from specialty design toward human-centered design for the entire hospital. The paper by Quirke et al. (2021, QV.) presents Plan-EAT, a simple tool to assess floorplans to quickly establish a basic bottom-line for the design quality of residential facilities for PLWD.

Again this ties back to the report edited by Fleming, Zeisel, and Bennet (2020a), which reinforces ten principles originally proposed by Fleming, Forbes, and Bennett (2003), 7 of which relate closely to relationships between aspects of the floorplans and simple data such as numbers of people a residence will house. Plan-EAT is limited because it focuses on what can be gleaned from floorplans alone, whereas people live in whole, 4-dimensional (3D + time) environments, which require a strong vision and collaboration to get right. Even so, the paper provides evidence that the Plan-EAT measures reflect a base level of quality beyond what is actually measured by Plan-EAT. This suggests what all architects know: that better plans articulate into better 4-dimensional environments. The authors are aware of the limitations of Plan-EAT and remind us that it isn’t a generative design tool nor is it intended to deliver simplistic answers to the complexity of living with dementia. Rather it establishes spatial benchmarks against which designers can quickly measure their schemes. If the basic plan can’t pass the Plan-EAT test, it is unlikely to articulate well into built form, and the work in doing so could easily be wasted.

ARCHITECTURAL SCIENCE REVIEW 3

As Quirke et al. point out, designers, planners, clients and researchers focus on floorplans and design principles because they’re important. But despite evidence to the contrary provided by Kirch and Marquardt (2021); Quirke et al. (2021) and many others, the paper by Golembiewski (2022, QV.) assumes that specialist designers in this space are already on top of such basics as floorplans. The paper seeks to expand the scope of possibility in design beyond the limits of what contemporary architects are taught is possible, to assist with all the complexity that will be required of the finished building. The paper points to evidence showing that architecture can be a powerful clinical tool possibly the most powerful non-pharmacological management tool for dementia that is available to creators of infrastructure. As such, there is a lot more to architecture than meets the eye. Indeed, the paper demonstrates that clever design is genuinely manipulative, yet subtle in the way it mitigates the challenges that PLWD and their carers face. But it also has a flip-side: poorly conceived environments can be deleterious. Golembiewski introduces a transdisciplinary and collaborative process to maximize the potential of any design for PLWD by maintaining the holism of design. The transdisciplinary process enables participants to work together as equals to create ecosystems for all the building’s users. This sometimes means putting aside their expertise, however considerable, so that more unusual voices are heard: the voices of PLWD in particular. Architectural Science Review received many more articles than the ones that made this special issue. Some of these were excellent, but for one reason or another couldn’t pass the standards of our reviewers. We wish to thank those authors, who gave their time and tried their best, and it’s our wish that these papers find a home and are published when they’re ready, because this is a space that needs more scholarship and under-standing. We also wish to thank our anonymous reviewers, for the invisible and often difficult labor they undertook in the background – mostly with the added burdens of the COVID years. A final word of thanks is due to Richard Hyde, our out-going editor in chief as he moves on from Architectural Science Review and is replaced by Darren Robinson, the new editor.

From the World Alzheimer’s Association 2020 reports, the Manifesto for Design for People Living With Dementia, to all the articles in this special issue of Architectural Science Review and all the other action in this space, now is a time for renewed hope for PLWD, as the homes and other spaces they inhabit will surely start improving in ways that make living with dementia, and caring for PLWD easier and more enjoyable.

Disclosure statement

No potential conflict of interest was reported by the author(s).

ORCID

Jan Gombelewski http://orcid.org/0000-0001-8054-6289

References

Burke, Ricky Lea, and Alejandro Veliz-Reyes. 2021. “Socio-Spatial Relationships in Design of Residential Care Homes for People Living with Dementia Diagnoses: A Grounded Theory Approach.” Architectural Science Review, 1–15. doi:10.1080/00038628.2021.1941749. Charras, Kevin. 2021. “Exploring Homeostatic Value of Space to Prevent Maladaptive Behaviors of People Living with Dementia: A Narrative Study.” Architectural Science Review, 1–10. doi:10.1080/00038628.2021.1927667. Dowden, John, Jo-anne Allardice, David Ames, Meredith Bucknell, Nick Carr, Vaughan Carr, John Condon, et al. 2008. Therapeutic Guidelines: Psychotropic. 6th ed. Melbourne: Therapeutic Guidelines. Fleming, Richard, Ian Forbes, and Kirsty Bennett. 2003. Adapting the Ward for People with Dementia. Edited by NSW Dept of Health. Sydney: Hammond Care Group. Fleming, Richard, J. Zeisel, and Kirsty Bennet. 2020a. World Alzheimer’s Report 2020: Design, Dignity, Dementia – Dementia-Related Design and the Built Environment. 2 vols. Vol. 1. Edited by R. Fleming, J. Zeisel, and Kirsty Bennet. London: Alzheimer’s Disease International. Fleming, Richard, J. Zeisel, and Kirsty Bennet. 2020b. World Alzheimer’s Report 2020: Design, Dignity, Dementia: Dementia-Related Design and the Built Environment. 2 vols. Vol. 2: Case Studies. Edited by R. Fleming, J. Zeisel, and Kirsty Bennet. London: Alzheimer’s Disease International. Francis, Keith, and Susan Murtha. 2021. “The Inclusion and Efficacy of First- Person Narrative in the Design of Long-Term Care Homes.” Architectural Science Review. doi:10.1080/00038628.2021.1917336. Golembiewski, Jan. 2022. “Using ecological theory to manage behaviour and symptoms in people living with dementia: a transdisciplinary approach to design.” Architectural Science Review. Grey, Tom, Dimitra Xidous, and Des O’Neill. 2020. “Design and the Built. Environment to Support Patients Living with Dementia and Accompanying Persons in Acute Hospitals.” In World Alzheimer Report 2020: Design, Dignity, Dementia – Dementia-Related Design and the Built Environment, edited by R. Fleming, J. Zeisel, and Kirsty Bennet, 56–61. London:

Alzheimer’s Disease International.

Kirch, Julia, and Gesine Marquardt. 2021. “Towards Human-Centred General Hospitals: The Potential of Dementia-Friendly Design.” Architectural.

Science Review, 1–9. doi:10.1080/00038628.2021.1933889.

Quirke, Martin, Michael Ostwald, Richard Fleming, Mark Taylor, and Anthony

Williams. 2021. “A Design Assessment Tool for Layout Planning in Residential Care for Dementia.” Architectural Science Review, 1–11. doi:10.1080/00038628.2021.1984869.

World Health Organization. 2018. Towards a Dementia Plan: A WHO Guide.

Edited by Stefanie Freel, Katrin Seeher, Neerja Chowdhary, Saskia Sivanan than, and Anne Margriet Pot. Geneva: World Health Organization.

Zeisel, J. 2020. “Reducing the 4 ‘A’s of Alzheimer’s Through the Engagement Replacement Method.” Living Well with Alzheimer’s, Tennessee.

www.alz.org/tn.

 

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