World Alzheimer Report 2020

The early years

Prior to 1980 the care of people living with dementia in high income countries was characterised by a focus on the medical aspects of the condition and a consequent institutional approach to treatment. John Zeisel – Dementia Care Design: Groundbreakers and Lessons Learned describes the paradigm shifting efforts of the pioneers who reacted against this model during the 1980’s and 90’s. Their innovative buildings were more the result of inspiration and trial and error than the systematic application of research findings but in building them they provided a context for research. The research was almost always small in scale, based in residential care and focussed on particular interventions such as the introduction of ‘shadow boxes’ to assist residents to identify the door to their room. But, the research, design and operation of the residential care centres were all heading in the direction of supporting the emergence of the provision of more home-like buildings. They all demonstrated that, given the right conditions, people with dementia can lead fulfilling lives with a much greater level of autonomy than was afforded to them in the old system.

The pioneers were not only struggling with the limitations of the available knowledge, they were also faced with

the challenge of convincing regulators of the benefits of breaking conventional rules about the design of residential buildings

where people with dementia were to live, rather than to be treated. These battles were often fought over the inclusion of kitchens, because of the perceived risks of people with dementia being engaged in cooking. Another innovation involved ensuring that people living with dementia continued to be linked to their communities, at least by being able to look through a window into the street, but sometimes in much more profound ways, such as shopping or living with people who did not have dementia. The foundations for our current conviction that people living with dementia should have the opportunity to live in their own homes as full citizens were laid during these early years.

Pioneers and innovators

Readers who have got to this point in the report will have worked through some weighty chapters. They will have been invited to consider how the concept of principles of design enables us to link the overarching goal of dignity for people living with dementia to the choice of door knobs and to systematise discussions on designing for people living with dementia; then to recognise the strengths and the weaknesses of the evidence base that supports our efforts in the design of residential care centres, day care centres, hospitals, public buildings and domestic homes. Leading to the acknowledgement that while much is known, much more needs to be outside of residential care if the knowledge base is to be useful in a world that is increasingly focussed on providing care in people’s own homes.
They will also have been introduced to, or reminded of, the pioneers of designing for people with dementia and the challenges they faced.
The next section provides a rest from such heavy reading as it links to a set of video interviews with two pioneers (Maggie Calkins and Clare Cooper-Marcus), three innovative architects (Allen Kong, Peter Phippen and Michael Murphy) and three paradigm shifters (Jannette Spiering, Wilhelmina Hoffman and Alan Dilani).
While these people are unique, they share a sustained passion for pushing boundaries, trying to find something that works better and then putting it into practice. They are also happiest when they are sharing their knowledge.

Rights and inclusion

The passion for improving design shown in the interviews is reflected on the international stage in the growing awareness of the role that human rights conventions must play in affording people living with dementia the dignity that is their right.
A central aim of this report is to place designing for people with dementia in the context of the growing movement that views dementia through the lens of both human and disability rights.
In the chapter Human Rights, design and dementia:moving towards an inclusive approach Kevin Charras reinforces the principle that Human Rights apply to every human being, and no exceptions should be made for people living with cognitive disabilities such as dementia.

The broadening of the scope of environmental design from a medical model to a more socially inclusive and rights-based framework is central to realising the rights of people with dementia.

The broadening of the scope of environmental design from a medical model to a more socially inclusive and rights-based framework is central to realising the rights of people with dementia.
Design can play a key role in embracing the diverse characteristics of people with dementia – neurological, psychological, cognitive, behavioural, social and cultural. Inclusive design – as distinct from universal and accessible design – encourages a focus on maximising abilities, know-how, and aptitudes for skill development, rather than on compensating for disabilities. Kate Swaffer – Disability Rights, Enabling Design and Dementia – reinforces this message by drawing a comparison between the progress made in environmental modifications carried out for people with a physical disability and those that are being made for people living with dementia.

Using experiences in Germany as an example Anne Fahsold and colleagues give us a critical reflection on the tendency of high income countries to foster segregation as the default mode of providing residential services to people living with dementia – Segregation and integration of people with dementia in long-term care environments – critical reflection on living concepts and possibilities of social inclusion. The chapter outlines that living environments are implemented very differently across the world, based on both differing care concepts and the perceived benefits and limitations for individual residents with dementia. Common though, are environmental design features such as orientation aids, stimulating features and environment safety features (e.g. locked doors or high fences) that can offer both challenges and opportunities for autonomy. The chapter presents a compelling argument for the identification of barriers to participation and taking action to create environments which support the person with dementia to operate as a full member of society. Residents must be given the choice to decide where they stay and when they meet with other people. In this light, it is critical that the perspectives of people with dementia be central to ongoing debates on integrative and segregative housing concepts in long-term care environments.

Niels Hendriks and Andrea Wilkinson in their chapter– The involvement of people with dementia in the design process: a (political) choice to make – emphasise the centrality of involving people living with dementia in rights-based design. They explore the political and pragmatic reasons for the involvement of people with dementia as full participants in the design process and describe a participatory design process that offers an approach that not only promotes better design solutions but also supports the agency of people with dementia. Participatory design provides opportunities to ‘design for one’ by prioritising the relationship between the designer and the person with dementia.

This requires designers from all design related professions, to embed themselves in the context of the person living with dementia,

attending to both the past and the present, to facilitate explicit and implicit decision making from the person with dementia.
The application of participatory design on a community scale is illustrated in the chapter by Martin Quirke and his co-researchers – Citizen audits: Developing a participatory, place-based approach to dementia-enabling neighbourhoods. This team successfully used games, theatre techniques, craft activities, poems, diaries, touch and proximity, personal objects and even songs and dance to engage people with dementia in the work of designing together. These techniques come together in a case study from a participatory project based in Stirling (Scotland) which aimed to create dementia-enabling public spaces. Practical strategies used within this citizen-led project aimed to overcome limitations in traditional methods by focusing on the experiential dimensions of place. The central strategy involved weekly citizen-led observational walks through the city. The participatory approach illuminated the embodied and sensory experience by the person with dementia of the built environment. Engaging local citizens living with dementia also provided opportunities to draw upon their knowledge of the sites being evaluated. Through this the project team and local council learned about the significance of sharing place-based memories and stories as a way of connecting for people with dementia. These experiences provide insights into the fact that socially supportive environments and problem-solving approaches can help to compensate for less supportive physical environments.

Overall, the authors in this section argue that, from a rights based perspective, inclusive design goes beyond giving opportunities to people with dementia. Rather

it encourages proactive behaviour and empowers people to take decisions concerning their own life, to take control over their environment and to live freely, independently and with dignity.

Implications for national planning

The effort to create national dementia plans has been part of an international commitment to improve the lives of people with dementia as well as those of their carers and families. The importance of these plans was emphasised by the World Health Organisation (WHO) when they adopted the Global action plan on the public health response to dementia 2017–2025. However, plans may focus on any aspect of dementia – typically topics include the legal framework for the care of people with dementia and the financial responsibility for the care. Regional or sub-national plans sometimes pre-date national plans or focus more specifically on key actions. Jan Golembiewski explores the extent to which plans address the topic of designing for people with dementia in the chapter Dementia related design in the national dementia plans. He analysed the contents of 31 national plans accessed via the ADI website and found that

National Dementia Plans are broadand diverse documents that rarely focus on the physical context of people living with dementia.

However, sometimes the plans state that the current standards are very low, implying an interest in better models of design. There are exceptions, Austria, Bavaria, Denmark, Gibraltar and Norway all see designing for people with dementia as pivotal to their approach to minimise the impact of dementia. They recognise it as a key tool for reducing symptomatology, helping people with dementia to remain integrated, meaningful and purposeful in society.

The analysis also revealed interests in providing support for people living with dementia in a very wide range of settings including home-based-care, day-care, respite-care, hospital-care, public buildings, urban settings, rural settings, residential homes, green spaces and palliative care. Accentuating the urgency to extend our knowledge base beyond the residential care setting. Carrying out this work will strengthen the claim that designing for people with dementia should be considered in every plan. At the moment only 29 out of the 194 WHO Member States have national dementia plans at all, a fraction of the WHO target of 75% coverage (i.e. 146 national dementia plans) by 2025. The analysis of these plans available through the ADI website shows that only about 25% of these provide strong support for the inclusion of designing for people with dementia. There is a clear need to raise awareness of its potential benefits in the minds of the policy makers and planners responsible for these plans. However, as the next section demonstrates so well, the adoption of the current knowledge into practice in countries and cultures that are different to those where the knowledge base was developed, is fraught with dangers.