Abstract
Tsekleves and Keady’s book, ‘Design for People Living with Dementia: Interactions and Innovations’ (2021) provides a broad understanding of a complex issue, which is the dire need for enabling environmental design for people with dementia or other types of neurodiversity.. It is relevant to a wide-ranging audience, including people with dementia. It strengthens the need for a rights-based understanding about the different design research methods that can actively be used to both support and empower people living with dementia. It rightly includes a focus on participatory action approaches to research, and the importance of co-design and co-production alongside people living with dementia. Co design, collaborating with people with lived experience and involving them at all levels of any project is critical, whether writing a book, in research, or in design as they are the end users (Goeman et al, 2019). Australia and the UK, and to a lesser extent Europe has been involved in participatory research for well over a decade, making this book on designing specifically for people with dementia very timely.
Some people may still be wondering why enabling design for people with dementia is so important, as too often, most people without dementia, and even some with dementia do not think of dementia as a condition causing cognitive and multiple other disabilities. The negative, disabling, and disempowering narrative still so commonly used in the media (Bailey et al, 2021), and by health care professionals, NGO’s, researchers and families, as well as civil society, and the post diagnostic experience of ‘prescribed disengagement’ (Swaffer, 2014), so many people with dementia still describe has been the mainstream response to a diagnosis of dementia. Until recently, there had been little focus on living positively with dementia specific to design for people with dementia (Rahman and Rahman, 2014). Yet, we provide wheelchair ramps and elevators for people who use wheelchairs for a person’s mobility or hearing loops for the hearing impaired. However, we do not provide universal design or other disability support such as communication access, that enable people with dementia through support for their disabilities, often referred to as cognitive ramps, which need to be commonplace (Yalon-Chamovitz et al., 2016). It is not only the physical environment that needs adjusting. An example of a cognitive ramp is the training developed by SCOPE Australia (2022), launched in 2016, that provides training for people who communicate with people with communication and speech disabilities, crucial to equal access as those with other disabilities under the Convention on the Rights of Persons with Disabilities (CRPD).
Since this book was published, the World Health Organisation (WHO, 2022a) estimates there are 55 million people with dementia. Alzheimer’s Disease International (2021) World Alzheimer’s Report (WAR) estimated 42 million people with dementia do not have a formal diagnosis. The Institute for Health Metrics and Evaluation has estimated that the number of people with dementia would increase from 57·4 million cases globally in 2019 to 152·8 million cases in 2050 (Nicholls and Feigin, 2019). Whilst prevalence data may differ, there is no ambiguity we are facing a critical point in how we view and treat people living with any type of dementia, of any age, to ensure a higher quality of life and improved care and support than currently available.
What is fundamental to this are the design principles for people with dementia, both in the community and in long term residential care, and critical to this is the same access to the CRPD and other Conventions, including the Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (the OPCAT), as afforded to all other people with disabilities, or who are placed in detention. There is a global movement of advocates asking for Member States to implement OPCAT, which all countries have ratified. This includes deinstitutionalisation and de-segregation, clearly highlighting this includes secure dementia units (Grenfell, 2019), making design principles of increasing significance. New Zealand now includes aged care facilities and secure dementia units as places of detention, under the same scrutiny as jails or detention centres through implementing OPCAT (Boshier, 2020). It also includes a growing number of people with dementia, as well as Dementia Alliance International; people with dementia who accept they are living with disabilities, and campaigning globally for their rights to equal access to the CRPD and other Conventions such as OPCAT. It is acknowledged that “This missing voice has so far resulted in the person living with dementia’s own perspective, subjective experiences and aspirations being largely absent from research within the field,” (Tsekleves et al, 2020, p. 93) and which is also missing in the dementia-friendly community (DFC) space. It also applies to research and advocacy, even though the representation of the ‘lived experience’ has been used as a marketing tool and for increasing the success in grant applications, too often the same voices are being used, and it remains tokenistic.
In 2010, the WHO launched the updated version of the WHO Disability Assessment Schedule (WHODAS 2.0) (WHO, 2022b), the internal classification of functioning, disability, and health, and at the same time stated in Dementia, that ‘dementia is a condition which is the leading cause of disability and dependence in older persons globally’ (it now says a major cause) (WHO, 2022a). Dementia is now recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing cognitive and other disabilities (UN, 2019). The International Disability Alliance includes DAI as an Observer member (2022), in recognition of dementia as a condition causing acquired cognitive (and other) disabilities. At their 2017 mental health GAP (mhGAP) Forum, the WHO re-categorised dementia as a condition causing cognitive disabilities; it had previously been listed under psychosocial disabilities. People with Younger Onset Dementia (YOD) in Australia now receive services via the National Disability Insurance Scheme (NDIS, 2017), a government funded disability support agency, and some universities are starting to see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first university to do this for a person with dementia after my own diagnosis.
In the context of this book review, you may be questioning the relevance of highlighting dementia as a condition causing multiple acquired disabilities, but it is critical to design principles for people with dementia, in the same way wheelchair ramps and elevators are critical for access of people who use wheelchairs for mobility. Ignoring something as important as this in any other health space would see everyone advocating for change, and whilst it may be unpleasant for a person with dementia to accept a second ostensibly negative D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially reduces the length and intensity of distress and grief following their diagnosis for a much shorter period, and to become more proactive about living with dementia by actively seek disability support. Everyone has the right to knowledge, and to appropriate care and disability support, including people with dementia, who therefore have the right to be told that dementia causes disabilities. Following a stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to accommodate them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone following a stroke.
Everyone has the right to be free from inhuman and degrading treatment, to be free from stigma and discrimination including indirect discrimination such as unfair treatment and applying blanket policies, to respect for private life which includes autonomy over their own lives, care, and treatment. We all have the right to participation in the community; to equal access to healthcare including rehabilitation, to respect for family life which includes maintaining family relationships and ongoing contact, and finally, the right to equal access to communities and therefore to liberty of movement.
In the Alzheimer’s Disease International (ADI) 2019 World Alzheimer’s Report (WAR2019), ‘Design, dignity, dementia: Dementia-related design and the built environment’ (Fleming et al., 2020a), and subsequent ADI guide developed by the authors of WAR19, for implementing environmental design into National Dementia Plans (Fleming et al., 2020b) provides concrete evidence for the need for this book, and for change globally so that people with dementia can live with autonomy and dignity, and importantly, be provided with disability support through environmental design. Dementia Alliance International (DAI), through a global initiative of two of its members, now hosts an (Environmental Design Special Interest Group ED-SiG) committed to moving from more rhetoric, and costly research and report writing, to tangible action.
This book provides an excellent overview of the current state of, and future need for improved environmental design, through a synthesis of research and practice including with case studies, including the current challenges in the design field. A stronger focus on people dementia as a disability, and their rights under the CRPD would have strengthened it. Overall, this book takes a huge leap forward, in guiding us all towards these important principles and guidelines towards achieving liberty and freedom for all, through highlighting the need for the implementation of environmental design globally.
ORCID iD
Kate Swaffer https://orcid.org/0000-0001-8963-2431