Compassionate cities: enabling people to have a fulfilling life after a dementia diagnosis

Our joie de vivre is significantly impacted by the built environment in which we live. Our home provides us with shelter and comfort; it is a place to surround ourselves with family and friends. The neighbourhood that wraps around our home can be conceptualised as an extension of the home, a place is where we contribute to our local community, establish connections and live out the story of our lives. A connected and safe neighbourhood will influence our sense of empowerment and well-being. By contrast, segregation from our community inhibits social inclusion bringing health and well-being complications. This is a key challenge for people living with dementia who can start to experience increasingly isolated lives when the built environment does not support their independence. However, a distinctive, legible and safe built environment can support people living with dementia, improving quality life and enhancing independence for as long as possible.

The experience of dementia affects communities as well as individuals. Dementia can impact memory and spatial recognition for those living with the condition. A dark coloured pattern in a path might appear as an impassable hole in the ground. Walking into a crowded room might be uncomfortable - even alarming. Wayfinding might be challenging as short-term memory of new places can be impaired resulting in disorientation. The 'You are here' maps at shopping centres may be no longer helpful as spatial awareness can be impacted.

Designing for people living with dementia requires deep understanding and passion for creating cities we can all love. Dementia is a collection of different symptoms caused by disorders affecting the brain. It is a process of neurodegeneration that is experienced diversely across individuals. It can interfere with everyday tasks, influence behaviour and impact cognitive processes. Dementia interrupts a person's normal working and social life. Dementia rates are increasing, with data indicating that some 472,000 people in Australia live with the condition today. This number is expected to increase to 1,076,000 in the next 35 years. These figures reflect an additional 250 people diagnosed each day, meaning that one in 10 people aged over 65 will be living with dementia. This group of diseases does not only impact older people. People aged under 65 can also experience early-onset dementia, and some 28,300 people live with younger onset dementia in Australia today.

Dementia comes at a tremendous personal cost to individuals and also generates a broader economic cost. By 2025 it is expected that dementia will collectively cost the Australian government and individuals some $18.7 billion. Dementia has an ongoing impact on families, carers and communities. Estimates say there are 1.6 million people in Australia involved in the care of someone living with dementia. Dementia is progressive, and while it is a condition that deteriorates over time, people with dementia are not immediately incapacitated. Some 70% of people with dementia live independently within the community, 11% of those live alone and they value their community and want to keep engaging with it. Of the seven stages of dementia, it is only by entering the sixth stage of the disease that full-time care is likely to be required.

Prior to receiving support in a care facility, people with dementia may attempt to avoid stressful situations and new challenges while they remain living in their own homes. The accessibility of destinations within their local neighbourhood is critical to their comfort and wellbeing. During this time, when people are still able to care for themselves, there are opportunities to assist them to remain in familiar surroundings. Aspects of a trip to the shops or café can become frustrating and uncomfortable especially if amenities are not designed appropriately. Usually within a centre there is signage directing people to the toilets. These facilities can be located at the end of long winding corridors. To support people living with dementia, there also needs to be signage to direct them back out into the shopping centre. A chair or place for rest at the entrance to the toilets would prevent family members or carers inadvertently wondering off and not being available as the person returns from the toilet. The task of shopping for food can become complex. At a shopping centre in Perth, Western Australia, the security team noticed that, while stolen car emergencies were declining, customers were misplacing parked cars at an increasing rate. The centre's location is in a local government area with a high ageing population, and the employees realised they required new skills and knowledge to support their customers. They called in Alzheimer's WA to provide Dementia Enabling training to the centre's tenants and management.

Dementia enabling design

Professionals working on dementia enabling environments focus on improving the accessibility of the physical environment to enable people living with dementia to remain living independently for as long as is safe. Many experts working in this space are researching and testing initiatives, developing design principles and advocating for awareness. The Dementia Enabling Environment Principles are based on the work of Professor Richard Fleming and Kirsty Bennett from the University of Wollongong who have developed ten evidence-based principles to maximise enablement and wellbeing for people living with dementia. These are:

1. Unobtrusively reduce risks
2. Provide a human scale
3. Allow people to see and be seen
4. Reduce unhelpful stimulation
5. Optimise helpful stimulation
6. Support movement and engagement
7. Create a familiar space
8. Provide opportunities to be alone or with others
9. Provide links to the community
10. Respond to a vision for a way of life

Great cities respond to the needs of the community, which evolve over the life course. Learning from people with clinical expertise and lived experience is essential to deeply understand the complex needs of those living with dementia. A study on the design of dementia friendly communities identified six design principles to follow: familiarity, legibility, distinctiveness, accessibility, comfort, and safety [1]. These principles align with a compassionate city and a city we would all like to live in. From an urban design perspective, there are some key applications for our cities:

Places we live

Moving out of the family home into a higher care facility can be difficult for all involved. Moving people living with dementia can adversely impact them by causing an experience termed 'transfer trauma'. Delivery of more appropriate housing could extend the period that people with dementia can remain in familiar surroundings. Initiatives to future-proof homes - like embedding 'smart' technology and improving the accessibility of spaces - support people with dementia to continue to safely live at home.

Places we need

Our urban environments should provide high amenity places that support people with dementia to continue with their everyday needs and empower them to be independent. Wayfinding becomes more complex for people with dementia, so highly visible and welcoming entrances to destinations are essential. Places should be connected by safe, accessible footpaths. Additionally, locations to rest and observe at entrances and decision points can improve the experience of a space.. Providing distinctive memorable places rather than homogenous places can support way finding.

Places to socialise

Spaces that allow people to see and be seen are enabling, supporting people with dementia to continue participating in a range of activities. In parklands and civic places, there should be spaces to observe the action from a distance or to engage directly. There should be different spaces or nodes that provide helpful stimulation as well as areas to relax. This diversity of spaces supports and enables people with dementia to choose their preferred way to interact with space and people.

The opportunity exists for designers to understand the needs of people living with dementia and make simple design changes to support them to have a purposeful life. Because the experience of dementia is not consistent, the challenge for design professionals is to work collaboratively with health professionals to identify the elements that are consistent and can be explored to inform policy. Through research, application and critical analysis, designers can find innovative ways to support people living with dementia. Preparing town planning policy and design guidance to encourage practitioners to consider the needs of those living with dementia will create a more caring and accessible city. Design professionals can have an opportunity to lead change. By designing with compassion we can make our neighbourhoods empowering, enabling and engaging.