Review

REPORT: ‘DESIGN, DIGNITY, DEMENTIA: DEMENTIA-RELATED DESIGN AND THE BUILT ENVIRONMENT’

FLEMING, R., ZEISEL, J. & BENNETT, K. 2020. World Alzheimer Report 2020: Design Dignity Dementia: dementia-related design and the built environment Volume 1, London, England: Alzheimer’s Disease International.

Prepared by Ash Osborne - DipAppSc; BHSc(Nursing); GradDipHSc(OS&H); qualified Access Consultant; Age Care and Dementia Design Consultant

In 2020 Alzheimer Disease International (ADI) released a report titled ‘Design, dignity, dementia: Dementia-related design and the built environment’ (https://www.alzint.org/resource/ world-alzheimer-report-2020/) . This report provides a comprehensive and in-depth look at dementia related design and the built environment, and covers design in home/ domestic settings, day and residential aged care, hospitals, and public buildings and spaces. The report was co-authored by Professor Richard Fleming , Kirsty Bennett (Architect) and Dr John Zeisel. Many of you would be familiar with the pioneering work of Richard and Kirsty in Australia.

To put this report in context, Alzheimer Disease International (ADI) is an international federation of Alzheimer and dementia associations and they have official relations with the World Health Organisation (WHO). Every year they commission a report on a different topic from highly respected international researchers, universities and authors. That Professor Fleming and Kirsty Bennett were invited to co-author this report (along with US based Dr John Zeisel) is an acknowledgement of Australia being recognised as a global leader in dementia related design and in leading the way in translating existing research into practice. The report also contains independent contributions from 58 named authors from 17 countries.

In further recognition of importance of this report, last month the European Healthcare Design (EHD) Awards presented the authors with the EHD 2021 Award for Outstanding Contribution to Global Knowledge.

This report highlights the need for dementia to be recognised as a disability and suggests that dementia enabling design is 30 years behind the progress made in recognising the impact of the built environment on those living with physical disabilities. Co-author of the report, Richard Fleming, says that dementia design is needed urgently, and our knowledge of how to do it has grown over the years.

“Our knowledge of how to design buildings that support people living with dementia has grown over the last forty years and we are now in a position to be more proactive in implementing it in practice”.

Contributing author Kate Schwaffer (Chair, Co-Founder and CEO of ADI’s partner Dementia Alliance International), says that the link between disability and environment is clear.

“Accepting that dementia is a major cause of disability and dependence in older persons worldwide is essential and is a critical reason why it is so important that the built environment for people with dementia is accessible, in the same way we provide wheelchair access.

People with physical disabilities have made major progress as substantial, influential members of society. Yet people with dementia are still being left behind, not only in terms of health and social care, but in terms of recognition of dementia as a condition causing disability and therefore of legislated disability support, and of enabling and accessible communities. What this means is that people with cognitive disabilities caused by dementia are still being denied the most basic access to live independently in their communities. People with dementia need cognitive ramps, in the same way people in wheelchairs are afforded wheelchair ramps. Through improving the built environments with dementia enabling strategies, we are more likely to provide substantial and improved opportunities for people with dementia to be supported to live independently in their homes and in their communities.”

Kate makes an incredibly important point for anyone involved in Access. If you are unsure if you would consider dementia a disability, consider these statistics for a moment:

• Dementia is the single greatest cause of disability in older Australians (aged 65 years or older) and the third leading cause of disability burden overall;

• Three in 10 people over the age of 85 and almost one in 10 people over 65 have dementia;

• Dementia is the second leading cause of death of Australians;

• In 2021, there are an estimated 472,000 Australians living with dementia. Without a medical breakthrough, the number of people with dementia is expected to increase to 590,000 by 2028 and 1,076,000 by 2058. (Statistics from Dementia Australia (2021))

Dementia is largely an unseen component of providing disability access in our environments. Including dementia design considerations in any access work should not be an afterthought (particularly when you consider 70% of Australians living with dementia live in the community). This report provides a comprehensive overview of dementia design and should be considered a useful resource for access professionals. The report covers progress to date, evidence based design principles, application, regional and cultural contexts, the importance of co-design with people living with dementia throughout all stages of any design process, and also covers the role of design during the coronavirus pandemic and beyond.

In the introduction to the report, the co-authors write:

“A direction had emerged from the words [of this report], the purpose of designing well for people living with dementia is to support them to reach their full potential as human beings. … The phrase ‘reach their full potential as human beings’ covers a lot of ground... This is a huge concept, if concepts have size, and there is a focus to it, dignity.”

With the release in February this year of the final report of the Royal Commission into Aged Care Quality and Safety which also recognises the profound impact of the physical environment on the quality of life, and care, of older Australians, particularly those living with dementia, Dementia and the needs of older Australians need to be a key component of access. The ADI Report ‘Design, dignity, dementia: Dementia-related design and the built environment’ provides an international insight into dementia design and will help to ensure that the therapeutic benefits of good dementia design are felt by people living with dementia, wherever they may live.

The principles of dementia design include:

• Unobtrusively reducing risks: Minimise risk factors such as steps and ensure safety features are as unobtrusive as possible.

• Providing a human scale: The scale of buildings can impact the behaviour of people with dementia, so provide a human scale to minimise intimidating features.

• Allowing people to see and be seen: The provision of an easily understood environment will help to minimise confusion. A literal line of sight should be clear for both residents, and staff.

• Reducing unhelpful stimulation: Environments should be designed to minimise exposure to stimuli that are unhelpful, such as unnecessary or competing noises and the sight of unnecessary signs, posters, spaces and clutter.

• 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.

• Support movement and engagement: Providing a well-defined pathway of movement, free of obstacles, can support engagement with people and opportunities.

• Create a familiar place: The use of familiar building design, furniture, fittings and colours affords people with dementia an opportunity to maintain their competence.

• Provide opportunities to be alone or with others: A variety of spaces, some for quiet conversation and some for larger groups, as well as spaces where people can be by themselves, gives people with dementia a choice to how they spend their time.

• Link to the community: The more an environment enables visitors to drop in easily and enjoy being in places that encourage interaction, the more the sense of identity that comes from spending time with loved ones and others is reinforced.

• Design in response to vision for way of life: 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.