World Alzheimer Report 2020

Overview

Design Dignity Dementia

Richard Fleming PhD, Honorary Professorial Fellow, Faculty of Science, Medicine and Health, University of Wollongong, Australia.
Kirsty Bennett B Arch (Hons), Grad Dip Gerontology, BD (Hons), FRAIA, Architect, Melbourne, Australia.
John Zeisel PhD, Hon D.Sc. Founder of The Hearthstone institute and the I’m Still Here Foundation.

In the beginning this report was going to be called “Dementia and the Built Environment”. In the final stages of pulling it together, having read, edited and discussed the 120,000 plus words written by international experts and having struggled with understanding where principles of design fit in the grand scheme of things, “Dementia and the Built Environment” no longer seemed adequate on its own. Too static, too dementia focussed.

A direction had emerged from the words, the purpose of designing well for people living with dementia is to support them to reach their full potential as human beings. Once said, this seems obvious, but readers of the chapter on the Early Years will see that this has not always been so.

The phrase ‘reach their full potential as human beings’ covers a lot of ground. The chapters on human rights, inclusive design and cultural influences delve into many aspects of what this means within the field of design. The chapter on principles of design bridges the overarching goal of enjoying human rights and the detailed tasks of design, such as selecting floor finishes. This is a huge concept, if concepts have size, and there is a focus to it, dignity.i

So the title evolved. Following the example of Tom Kitwood, dementia was put last. Design first, because that is the topic of the report. Dignity in prime focus, the middle, because that is what we are all trying to achieve in working with people living with dementia to provide enabling buildings.

While this report contains independent contributions from 58 named authors from 17 countries there is a narrative to it. The next few pages will outline that narrative and provide a scaffold to support the reader who wants to jump from point of interest to point of interest.

Principles

In comparison with many other fields, designing for people living with dementia does not have a large knowledge base. Nevertheless, there is a sufficient range of views and isolated ‘facts’ that writing a report on the field would be made much easier if the contributors could, by and large, agree to use a small set of principles of design to structure their thoughts and writing. The first chapter introduces the reader to a set of principles and carefully sets out an argument for accepting them as a useful tool in structuring the contributions to this report. Happily, where the use of principles was relevant to the topic, the contributors have used those described in Chapter 1 to structure their writing, conceivably laying a foundation for future systematic discussions about designing for people living with dementia.

This chapter also endeavours to explain the function of principles as a link in the chain that connects the high order goal of reaching the full potential of a human being with the basic, but essential tasks involved in designing the fine details of the built environment, even down to choosing door knobs.

I Pointed out by Jan Golembiewski during one of our discussions.

In a nutshell, this chapter puts forward, for the first time, a picture of how designing for people living with dementia is a journey that must start and finish with dignity, as we move from knowing why we design to how we design.

The principles of designing for people living with dementia

• Unobtrusively reduce risks
  People living with dementia require an internal and external environment that is safe and easy to move around if they are to continue to pursue their way of life and make the most of their abilities. Potential risks such as steps must be removed. All safety features must be unobtrusive as obvious safety features, such as fences or locked doors, can lead to frustration, agitation and anger or apathy and depression.
• Provide a human scale
  The scale of a building can affect the behaviour and feelings of a person living with dementia. The experience of scale is influenced by three key factors; the number of people that the person encounters, the overall size of the building and the size of the individual components (such as doors, rooms and corridors). A person should not be intimidated by the size of the surroundings or confronted with a multitude of interactions and choices. Rather the scale should encourage a sense of wellbeing and enhance the competence of a person.
• Allow people to see and be seen
  The provision of an easily understood environment will help to minimise confusion. It is particularly important for people living with dementia to be able to recognise where they are, where they have come from and where they can go. When a person can see key places, such as a lounge room, dining room, their bedroom, kitchen and an outdoor area they are more able to make choices and see where they want to go. Buildings that provide these opportunities are said to have good visual access. Good visual access opens up opportunities for engagement and gives the person living with dementia the confidence to explore their environment. It also enables staff to see residents. This reduces staff anxiety about the residents’ welfare and reassures the residents.
• Reduce unhelpful stimulation
  Because dementia reduces the ability to filter stimulation and attend to only those things that are important, a person living with dementia becomes stressed by prolonged exposure to large amounts of stimulation. The environment should be designed to minimise exposure to stimuli that are not specifically helpful to the resident, such as unnecessary or competing noises and the sight of signs, posters, spaces and clutter that are of no use to the resident. The full range of senses must be considered. Too much visual stimulation is as stressful as too much auditory stimulation.
• Optimise helpful stimulation
  Enabling the person living with dementia to see, hear and smell things that give them cues about where they are and what they can do, can help minimise their confusion and uncertainty. Consideration needs to be given to providing redundant cueing i.e. providing a number of cues to the same thing, recognizing that what is meaningful to one person will not necessarily be meaningful to another. Using text and image in signs is a simple way to do this. Encouraging a person to recognize their bedroom through the presence of furniture, the colour of the walls, the design of a light fitting and/or the bedspread is a more complex one. Cues need to be carefully designed so that they do not add to clutter and become over stimulating.
• Support movement and engagement
  Purposeful movement can increase engagement and maintain a person’s health and wellbeing. It is encouraged by providing a well-defined pathway, free of obstacles and complex decision points, that guides people past points of interest and opportunities to engage in activities or social interaction. The pathway should be both internal and external, providing an opportunity and reason to go outside when the weather permits.
• Create a familiar place
  A person living with dementia is more able to use and enjoy places and objects that are familiar to them. The use of familiar building design (internal and external), furniture, fittings and colours environment affords them the opportunity to maintain their competence. The personal backgrounds of the residents need to be reflected in the environment. The involvement of the person living with dementia in personalising the environment with their familiar objects should be encouraged.
• Provide opportunities to be alone or with others
  People living with dementia need to be able to choose to be on their own or spend time with others. This requires a variety of spaces in the unit, some for quiet conversation and some for larger groups, as well as spaces where people can be by themselves. When the internal and external spaces have a variety of characters, e.g. a place for reading, looking out of the window or talking, this cues the person to engage in relevant activity and stimulates different emotional responses.
• Link to the community
  Without constant reminders of who they are, a person living with dementia loses their sense of identity. Frequent interaction with friends and relatives can help to maintain that identity. The more the environment enables visitors to drop in easily and enjoy being in places that encourage interaction, the more this sense of identity is reinforced. Such places need to be attractive and comfortable to encourage visitors to come and spend time.
• Design in response to vision for way of life
  The choice of lifestyle, or philosophy of care, will vary between facilities. Some will choose to focus on engagement with the ordinary activities of daily living and have fully functioning kitchens. Others will focus on the ideas of full service and recreation, while still others will emphasise a healthy life-style or, perhaps, spiritual reflection. The way of life offered needs to be clearly stated and the building designed both to support it and to make it evident to the residents and staff. When the building embodies the philosophy of care, it constantly reminds the staff of the values and practices that are required while providing them with the tools they need to do their job.