Richard Fleminga, John Zeiselb, Kirsty Bennettc, Jan Golembiewski d, Kate Swaffer e,f and Lynda Hendersong
Faculty of Arts, Social Sciences and Humanities, University of Wollongong, Australia; Hearthstone Institute, and Hopeful Aging LLC; cArchitect FRAIA: designer, educator and carer; Psychological Design, Sydney, Australia; Dementia Alliance International; University of Wollongong; gCare partner of a person living with a Younger Onset Dementia, Australia
ABSTRACT
This editorial is intended to introduce The Dignity Manifesto of Design and request meaningful commentary on this guide for environments for people living with dementia, so that design will support values of dignity, autonomy, independence, equality of opportunity, and non-discrimination. The two-part manifesto – a short list of values followed by ten design principles – follows Recommendation 1 of the Alzheimer’s Disease International World Alzheimer’s Report 2020.
So far, the manifesto has been available for signing on a website for a year with signatories invited to comment on the values and principles. Comments have been reviewed and the manifesto modified in light of them, with the intention to establish a concise consensus statement of values and principles that carries international acceptance and weight. The up-to-date manifesto is available for signature and comment on the website: (https://designdignitydementia.com/manifesto-2).
A small group of responsive design advocates began this effort by identifying the need for a vision for designing environments for people living with dementia. The vision and the basic truths (principles) that underpin good dementia design came together as a call for action – a manifesto that places the person living with dementia and their human rights and needs at its centre.
The immediate catalyst for the manifesto was the Alzheimer’s Disease International (ADI) World Alzheimer Report 2020: Design Dignity Dementia, dementia-related design and the built environment. The ADI Report’s first recommendation states:
ADI will facilitate discussions on the development and adoption of a common set of design principles that will be used to structure the exploration of designing well for people living with dementia and the formulation of future recommendations (Fleming, Zeisel, and Bennett 2020)
The Dignity Manifesto is proposed here for adoption and further discussion and as a consensus framework for those seeking to design residential settings for people living with dementia.
History
In February 2019 in Sydney Australia, Dementia Training Australia, spurred on by international developments and chang ing expectations towards supporting social relationships and quality of life in care homes, hosted a symposium titled Vision Driven Design – when good design is not enough. The symposium – the culmination of decades of work – brought together
CONTACT Richard Fleming flaming@uow.edu.au
© 2022 Informa UK Limited, trading as Taylor & Francis Group
The Dignity Manifesto of Design – for People Living with Dementia As designers, researchers, care deliverers, care receivers, and people living with dementia we have come to
understand that good design for people living with dementia entails respecting their dignity, autonomy, independence, equality of opportunity, and non-discrimination.
Principles
In pursuit of these goals, we value projects and designs that:
- Consider the holistic wellbeing of the individual, community, and environment
- Are authentically co-designed with people living with dementia • Enable people living with dementia to choose to remain in their communities and with their families
- Maximize intergenerational interactions
- Focus on the strengths and abilities of people living with dementia while compensating for functional changes
- Accentuate the freedom of people living with dementia to make choices
- Assist people living with dementia to maintain their culture • Are informed by evidence and research
Principles
These values are supported when design and planning of the built environment respond to the following evidence-based principles
- Begin each project by developing a vision for a dignified way of life for people living with dementia.
- Where safety measures are agreed to be appropriate, design them to be as unobtrusive as possible.
- Design the environment to reflect a human scale.
- Plan the environment to make it easy for people to see and move where they want to go.
- Optimize stimulation.
- Promote movement, engagement, and meaningfulness.
- Afford people opportunities to enjoy contact with nature.
- Design all components of the environment to be as familiar as possible.
- Afford people opportunities to choose to be alone or with various size groups of people.
- Provide easy access and connection to and from local communities, families, and friends.
groundbreaking architects, designers, researchers, and residential care providers to discuss the role a vision for a way of life can play in designing the next generation of accommodation for people living with dementia.
2 EDITORIAL
Group conversations between presenters and practitioners quickly replaced formal presentations. At the end of these lively interactions, four of the presenters (Fleming, Bennett, Zeisel, and Golembiewski) reflected on the two days, concluding that there was a core to the symposium that, in order to continue the conversation more broadly, needed to be made public in a set of statements or a position encapsulating the energy and direction of the discussions.
Alzheimer’s disease International’ World Alzheimer Report 2020
The opportunity to explore that core came about at the end of 2019 with the writing of the Alzheimer’s Disease Interna tional’s World Alzheimer Report 2020 (Fleming, Zeisel, and Bennett 2020). This report brought together contributions from 58 authors from 17 countries and 84 case studies from 27 countries (https://www.alzint.org/resource/world-alzheimer-report 2020/ . From the beginning it was clear that bringing this wealth of information together would require a systematic approach. The approach adopted was based on a set of
design principles that Fleming and Bennett had used for many years. The use of these principles is carefully explained in chapter two of the report (Bennett, Fleming, and Zeisel 2020). The result was that the information provided in the report was extensively structured with reference to these principles.
Writing the report required many hours of conversation about the issues presented, particularly the relationship between the Fleming-Bennett design principles and Zeisel’s design approaches and responses (2009, 2013), rekindling the enthusiasm for a concise statement of the core values that were shining through the contributions. The question was, how should this brief statement be presented?
A Manifesto
The decision was made to present these statements as a manifesto- a document publicly declaring the position or program of its issuer. A manifesto advances a set of ideas, opinions, or views, but it can also lay out a plan of action. … Manifestos are generally written in the name of a group sharing a common perspective, ideology, or purpose rather than in the name of a single individual. (https://www.britannica.com/topic/manifesto)
While manifestos are often political statements, there are examples of manifestos written by industry groups with the express intention of bringing about changes in practice – particularly when the issuers have observed that the industry norms have calcified representing a level of dysfunction that has come to be accepted and even expected by the industry at large. A good example is the Manifesto for Agile Software Development (https://agilemanifesto.org/) written in 2001 by a small group of software designers and project managers wishing to provide a better alternative to the rigid, linear, process-driven approach to software development that dominated the industry. While
this manifesto had only 17 initial signatories, by placing it on a website the authors made it available for signing by like-minded people. Since its launch, it has been signed by many hundreds (https://agilemanifesto.org/display/index.html), has become a standard in software development, and has even influenced the course of project management in other industries as diverse as construction management (Loforte Ribeiro and Fernandes 2010), military planning (Cojocar 2011), the deployment of humanitarian aid (Oloruntoba and Gray 2006) and healthcare design (Nelson-Peterson and Leppa 2007).
The Agile Manifesto’s format – a statement of values followed by a list of principles – has been adopted and adapted for the Dignity Manifesto. Like the Agile Manifesto, the Dignity Manifesto of Design is available for signature and comment.
Next steps
The manifesto is intended to drive change in the way we design for and with people living with dementia. Our hope is that it will be discussed, improved, and embraced by designers, researchers, care deliverers, care receivers, and people living with dementia across the world.
The authors invite you to take part in this discussion by signing the manifesto at https://designdignitydementia.com/ manifesto-2 and make recommendations for a third iteration of the manifesto. The manifesto will be periodically reviewed by the authors and modified in light of suggestions.
ORCID
Jan Golembiewski http://orcid.org/0000-0001-8054-6289 Kate Swaffer http://orcid.org/0000-0001-8963-2431
References
Bennett, K., R. Fleming, and J. Zeisel. 2020. “Design Principles and their Use in this Report.” In World Alzheimer Report 2020: Design Dignity Dementia, Dementia-Related Design and the Built Environment Volume 1, edited by R. Fleming, J. Zeisel, and K. Bennett, 25–46. London: Alzheimer’s Disease International.
Cojocar, W. J. 2011. “Adaptive Leadership in the Military Decision Making Process.” Military Review 91 (6): 29–34.
Fleming, R., J. Zeisel, and K. Bennett. 2020. Design Dignity Dementia: Dementia-Related Design and the Built Environment. . Alzheimer’s Disease International (London). https://www.alz.co.uk/u/WorldAlzheimerReport 2020Vol1.pdf.
Loforte Ribeiro, Francisco, and Manuela Timóteo Fernandes. 2010. “Explor ing Agile Methods in Construction Small and Medium Enterprises: A Case Study.” Journal of Enterprise Information Management 23 (2): 161–180. https://doi.org/10.1108/17410391011019750.
Nelson-Peterson, Dana L, and Carol J Leppa. 2007. “Creating an Environ ment for Caring Using Lean Principles of the Virginia Mason Production System.” JONA: The Journal of Nursing Administration 37 (6): 287–294.
Oloruntoba, Richard, and Ricahrd Gray. 2006. “Humanitarian aid: An Agile Supply Chain?” Supply Chain Management: An International Journal 11 (2): 115–120. https://doi.org/10.1108/13598540610652492.
Zeisel, J. 2009. I’m Still Here: A New Philosophy of Alzheimer’s Care. Pen guin/Avery Books, New York (Chapter 6 Treatment by Design: 136-151). Zeisel, J. 2013. “Improving Person-Centered Care Through Effective Design.” Generations: Journal of the American Society of Aging 37 (3): 45–52.