The Dignity Manifesto of Design for People Living with Dementia

History and Context

In February 2019 in Sydney Australia, Dementia Training Australia, spurred on by international developments and changing 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 a number of ground-breaking designers and residential care providers to discuss the role of a vision for a way of life in designing the next generation of accommodation for people living with dementia. Presenters included architects, researchers, and pioneering aged care providers.

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), reflecting on the two days, concluded 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 that encapsulated the energy and direction of the discussions.

Alzheimer’s Disease International’s 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 International’s World Alzheimer Report 2020 (Fleming et al., 2020a, Fleming et al., 2020b). 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 the use of the set of design principles that Fleming and Bennett had used for many years, and the use of these principles is carefully explained in chapter two of the report (Bennett et al., 2020). The result was that most of the information provided in the report was structured with reference to these principles and, happily, the authors had no difficulty using this approach.

Writing the report required many hours of conversation about the issues and approaches presented in it, particularly the relationship between design principles and design approaches and responses, as exemplified in the work of Zeisel (2013)rekindling the enthusiasm for a brief statement of the core values that were shining through the contributions. The question was, how should this brief statement be presented?

A Manifesto

Following a suggestion by Jan Golembiewski 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 that have been 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 to represent 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 who wished to provide a better alternative to the rigid, linear, process driven approach to software development that had dominated the industry. While this manifesto had only 17 initial signatories by placing it on a web site the authors made it available for signing by other like-minded people. Since its launch it has been signed by many hundreds (https://agilemanifesto.org/display/index.html), has become the new standard in software development, and has even influenced the course of project management in other industries as diverse as construction management (Loforte Ribeiro and Timóteo Fernandes, 2010), military planning (Cojocar, 2011), the deployment of humanitarian aid (Oloruntoba and Gray, 2006) and healthcare design (Nelson-Peterson and Leppa, 2007).

The Dignity Manifesto of Design has followed this example. It was launched on the 1stMay 2021 with six signatories – Richard Fleming, John Zeisel, Kirsty Bennett, Jan Golembiewski, Kate Swaffer and Lynda Henderson. By the 21st July 2021 it had been signed by 264 people from 35 countries. All signatories were invited to suggest refinements to the manifesto as part of the signing process and a commitment made that their comments and suggestions would contribute to a review of the manifesto resulting in the publication of revised version in October 2021. Suggestions for revisions were made by 58 signatories.

Refining the manifesto

The comments and suggestions were systematically analysed. The details of this analysis are provided in an article that is being prepared for publication. The major changes made to the values and principles are :-

The simplification of the values to focus on positive aspects of design, e.g.
- Projects that are authentically co-designed with people living with dementia

rather than

Projects that are authentically co-designed with people living with dementia over projects that only use experts as proxies
The inclusion of two additional values:
- Designs that assist people living with dementia to maintain their culture
- Designs that are informed by evidence and research
The broadening of an holistic approach by modifying
- Designs that consider the needs of the whole person over those that focus solely on a person’s dementia

Designs that consider the holistic wellbeing of the individual, community, and environment
The combination of
- Minimise unhelpful stimulation.
- Optimise helpful stimulation.

into one principle

Optimise stimulation
The addition of a new principle
- Afford people opportunities to enjoy contact with nature
The strengthening of the focus on relationships by including families and friends:-
- Provide easy access and connection to and from local communities, families, and friends.
Greater prominence given to authentic co-design with people living with dementia by relocating this value

In addition, some changes were made to improve the grammar and punctuation.

The comments included suggestions that the values and principles be couched in terms of particular paradigms or approaches, e.g. salutogenesis and universal design, and that issues of human rights be more fully articulated. These comments were taken very seriously and have been addressed in the document available by clicking the link below

History and Context

Alzheimer’s Disease International’s World Alzheimer Report 2020

A Manifesto

Refining the manifesto

References

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