‘Cognitively inclusive’ toolkit aiming to get design right

The Designing for Everyone toolkit has been developed to help GP practices and health centres improve their buildings and the physical environment of care for all patients, and particularly those who are living with dementia, learning disabilities, autism, or cognitive impairment. It is believed to be the first integrated resource of its kind to focus specifically on design principles to support those who are neurodiverse or have conditions like anxiety.

There is a growing body of evidence to indicate that appropriate design of the environment across a range of settings can promote independence, quality of life, and wellbeing, for older people in general, and in particular for those living with dementia.1 Until relatively recently however, less attention has been given to the possibility of developing supportive design for people living with other neurodiverse conditions that cause sensory processing difficulties.

Neurodiversity is a term increasingly being used to describe people whose brain operates differently from that of a neurotypical individual in respect of sociability, learning, attention, mood, and other mental functions. It describes a wide cluster of people estimated at 20% of the population with different presentations linked to neurological origins — including dementia, autism, attention deficit, and hyperactivity disorders, Asperger’s syndrome, dyslexia, dyspraxia, and Tourette Syndrome, as well as people with complex needs and mental health conditions that differ from that of a ‘neurotypical’ individual. ‘Neurodiverse’ therefore describes individuals rather than a specific condition, but currently there is no standard definition of either the neurodegenerative or neurodivergent conditions that should be included in the umbrella term, ‘neurodiversity’. The British Standards Institute’s Publicly Available Specification (PAS), Design for the Mind. Neurodiversity and the built environment, makes it clear that it does not focus on one condition, difficulty, or difference, recognising the diversity of human brains and that each is unique.2

The design of primary care premises

GP surgery and primary care premises (collectively hereinafter ‘health centres’) are the gateway to wider NHS services where, pre-pandemic, over 300 million patient consultations took place annually. Many of these premises are known to be far from ideal, particularly for an ageing and increasingly diverse population, yet there is little freely available advice on good design for people living with dementia in this setting.3

Assura plc develops, invests in, 
and manages, health centres across 
the UK, and had commissioned reports from The Patients Association and Dimensions, a charity that supports people with learning disabilities and autism, to better understand the effect of the physical environment on the patient experience in primary care. Both reports confirmed the critical importance of the design of the built environment for the delivery of high-quality, patient-centred primary care services. There was an expressed need for health centres to be welcoming, calm, and comfortable, while being supportive of patients’ independence, privacy, and dignity, and affording them choice and control. Of concern were the clear indications that a poor environment and lack of privacy could lead to significant stress for patients, and in some cases cause appointments to be missed.

Future design criteria

Having gained the experience of designing a dementia-friendly health centre, and taken on board the findings from these reports, Assura wished to ensure, as far as is practical, that its future designs and refurbishments met the needs of those with dementia, learning disabilities, and autism (both of which increase the risk of developing dementia), and those who are neurodiverse. The Association for Dementia Studies, University of Worcester was commissioned to research and develop
a suite of tools that could be 
used to support the design of health centres so that they could better 
support people living with neurodegenerative and neurodiverse conditions. The tools were to be capable of informing future health centre developments and major refurbishments, as well as providing a checklist for internal monitoring purposes.

A scoping review of the literature and published policies was undertaken, with a focus on design for dementia, learning disability, autism, and neurodiverse conditions. Design advice, guidance, and environmental assessment tools are now widely available for people living with dementia, although not all have a strong evidence base, and there is a lack of evidence for some more recent approaches — such as the use of floor-to-ceiling murals, assistive technology, and immersive reality, along with a critical need for the perspectives of people affected by dementia to be integral to all research.

Autism is a lifelong condition, and not a learning disability, although around half of people with autism may also have a learning disability. It was not possible to identify any specific design advice for those with learning disabilities. To date, the majority of research on autism- friendly design has focused on younger people, either in school or residential care settings.4 The term, ‘neurodiversity’, was most commonly encountered in relation to people with autism, and there appears to be little indication at present that there is a recognised difference between design for autism and neurodiversity. For example, guidance on creating more supportive workplace environments for those that are neurodiverse mirrored the design features identified for young people with autism.

Mapping exercise

The key design elements identified by the scoping review were mapped against areas accessed by patients in health centre premises with relevant data from the patient organisation reports. For the purposes of the mapping, people with dementia were deemed to be older people with associated disabilities of ageing and co-morbidities. A range of design features that are important to those with neurodegenerative and/or neurodivergent conditions, particularly, but not exclusively, around the sensory elements of design, were identified. This stage of development highlighted the importance of acknowledging the individuality of response to environmental design features. For example, someone may be highly sensitive to physical or emotional stimuli (hypersensitive), or conversely under-responsive (hyposensitive) to noise, smell, touch, or light. Critically, these responses are individual, and not determined by a person’s condition.

Recognising the need to acknowledge individual responses, it was possible to identify aspects of good environmental design for people living with dementia, autism, and neurodiversity, that 
would importantly also enhance the experience for the general population when visiting health centres.

These were:

the critical importance of the general ambience and cleanliness of health centre premises to the wellbeing of patients, and for the delivery of person-centred, high-quality primary care services.
the key role that design should play in enhancing a person’s privacy, dignity, independence, choice, and control.
the importance of recognising differences in the sensory experience of those living with cognitive challenges and neurodiversity.
the adaptability of spaces to meet individual needs and circumstances.
the importance in relation to the built environment of:

approach and access to buildings.
spatial sequencing and transition zones.
design of reception areas and waiting spaces.
provision of alternative ‘safe’ spaces.
toilet provision, particularly for people with physical disabilities.
decoration, furnishings, and signage.
outdoor spaces.

These aspects would be expected to provide an environment, both internally and externally, that promotes accessibility and support, enhances care and comfort, supports independence and privacy, and ensures safety and security.

The Designing for Everyone toolkit

The development of the toolkit was informed by a Reference Group of Assura staff who were critical in ensuring that the tools and guides were both user-friendly and informed by practical experience, together with Dimensions, who provided specialist support. The tools focus on those aspects of the physical environment known to impact on people living with cognitive impairment and neurodiversity, and are designed to be as flexible as possible to take account of the varied nature of health centres. The rationale for each design feature is included in the tools, and — following feedback — a short introductory guide was produced to support those using the tools.

The tools and guides have been designed for use in any health centre. The full environmental assessment tool, which includes information on environmental changes that may be required during a pandemic, will be used to inform the design of new builds and major refurbishments.

Use during routine premises inspections

Designed for use during routine premises inspections by Practice managers, premises teams, and patient groups, the shorter summary tool will enable a better understanding of how the design and layout of a building works for people 
with a range of needs. To ensure inclusivity and maximise patient and public involvement and engagement in the assessments, Dimensions has developed an ‘easy read’ version of the guide and summary tool.

It is important to recognise that the toolkit focuses on the internal and external built environment, not the interactions between staff and patients — which are an integral part of the patient experience. Although it is possible to deliver exceptional care in a less than ideal environment, attitudes and behaviours can negatively affect the patient experience. Staff can equally well be affected by the environment in which they work, with experience from dementia-friendly design projects indicating improvements in recruitment and staff morale, and reductions in sickness absence, following refurbishments.5

Future design for neurodegenerative and neurodivergent conditions

This project has confirmed that the principles of good design for people living with dementia are applicable, with modifications, to a wider group of people, including those with other neurodegenerative and neurodivergent profiles. With any environmental assessment it needs to be recognised that each individual will respond differently to their environment. Despite the higher incidence of dementia amongst people with learning disabilities and autism, their particular needs have not been addressed previously in relation to environmental design, and there is a paucity of research focused on autism-friendly design for the adult population. It was also evident that there is a need for further large-scale, multi-service evaluations of dementia-friendly design involving the perspectives of those affected by dementia, and particularly in areas involving new technology.

The scoping review indicated that the development of an assessment tool for cognitively inclusive design is innovative. Assessments using the tools are already informing Assura’s refurbishment and new build programme, and are encouraging those who have learning disabilities or who are neurodiverse to become involved in conversations about improving the environment. It is believed that the assessment tools, including the ‘easy read’ versions developed with Dimensions, can play a vital part in improving the patient experience, engagement with health services, and reducing inequality of access to care. The toolkit is available free to download as part of Dimensions’ suite of training resources for general practice in its #mygpandme campaign (https://dimensions-uk.org/dimensions-campaigns/#mygpandme).

Although most patient contacts in the NHS take place in health centres, little attention has been given to the design of premises from the perspective of an increasingly elderly and diverse population, and those with neurodegenerative or neurodivergent profiles. Although this project focused on the health centre environment, we believe that it has applicability across all health and care settings. The overarching concept of neurodiversity may therefore have the potential to bridge the gap between designing for separate conditions and ‘Designing for Everyone’ with a cognitive impairment, or who is neurodiverse.

References

1 Evans SC, Waller S, Bray J. Designing inclusive environments for people living with dementia: how much do we really know? Work Older People. 2022; 26(2):89-96.

2 British Standards Institution. Design for the Mind. Neurodiversity and the Built Environment. Guide. PAS 6463:2022. BSI, London, 31 October 2022.

3 Waller S, Evans SC, Bray J, Atkinson T. Designing for everyone: can the principles of dementia-friendly design inform design for neurodiversity in health-care settings? Work Older People. Preprint posted online 25 January 2024. [Accessed 25 April 2024]. Available from:

4 Mostafa M. Architecture for autism: autism aspects in school design. ArchNet-IJAR 2014: Mar: 8(1):143-158.

5 Waller S, Masterson A, Finn H. Developing Supportive Design for People with Dementia: The King’s Fund’s Enhancing the Healing Environment Programme 2009-2012. The King’s Fund, London, 2013.