16 Lessons What we have learned

1. All architects need to understand dementia.

The tragedy of dementia is that the brain is hidden: we cannot see the physical degeneration caused by the condition. This lack of visible physical symptoms may allow an individual to hide a diagnosis from friends and family for a long period of time, or prevent support networks from forming around them. We need to better understand dementia, and learn how to support people with dementia to continue to do what they’ve always done. Architects need to design houses, public buildings and cities with a full understanding of the cognitive difficulties that people with dementia face every day.

Helen Rochford-Brennan has dementia. She finds that people often misunderstand what that means. When she books airport services to assist with her navigational difficulties, she is invariably presented with a wheelchair despite her lack of physical disability. ‘It’s my brain that’s slow, not my feet,’ she tells us.

 

2. Home truth.

The best place for someone with dementia is at home. Lesley Palmer, an expert in design for dementia, stresses that ‘you shouldn’t have to leave your own home until your care needs are so acute that it is absolutely required’.

Allowing people to stay at home and in their communities reduces the risk of loneliness and isolation. The familiarity of the home is vital for a sense of belonging. June Andrews, a leading thinker on policy for dementia, recommends that as little is changed as possible. Support at home can be enhanced by engagement with day-care centres, which provide daily stimulation and socialisation and give carers much-needed respite.

Some adjustments may be required to allow people to stay at home, but we should remember the very intimate level at which we are bound into our houses. Our understanding of our homes extends past what we see to a precise physical familiarity called proprioceptive memory, which allows us to move around without knocking anything over. This is deeply inscribed in the mind.

 

3. Risk and autonomy.

There is a tension between the need to keep people safe and the need to preserve their quality of life. We are preoccupied with health and safety, the reduction of risk and controlled institutional environments that can eventually devastate the individual. For example, Lesley challenges the notion of the balcony as a risky building element for older people: ‘We’re depriving everybody of daylight, for fear of someone jumping.’

Jacqui Carson, the manager of an assisted living centre says: ‘People [should] still get to make poor choices for themselves if they choose.’

When we remove opportunities for exploration and decision-making, we dehumanise people. It is easy to identify the physical damage of a broken arm, but it is difficult to quantify the mental damage inflicted by the loss of autonomy due to excessively restrictive policies. Which is worse?

 

4. My personal daisy-chain.

Each person with dementia is unique; they have their own individual tastes and preferences. For this reason, the care environment and assistance for people with dementia should draw a lot on a person’s biography. As Tom Kitwood argues in Dementia Reconsidered: The Person Comes First, the prime task of dementia care is ‘to maintain personhood in the face of failing of mental powers’.

‘Best practice’ guidance and management policies that restrict personalisation can lead to an institutional, clinical and uninviting environment. It is common for dementia care facilities to prohibit users from decorating their rooms for fear of theft of or damage to their possessions by others. But provision for personal object placement in the building is vital for the individual’s emotional wellbeing, their sense of personhood and ease of navigation.

In the past it was the practice to colour-code areas to aid navigation and memory. It has since been shown to be far more effective to create a spatial ‘daisy-chain’ of interesting objects and situations so that a person’s memory is prompted by these vivid markers throughout the building.

 

5. Consider the city.

Barriers to navigation isolate people. Lesley explains: ‘Consider the cityscape, or our entire landscape: where do older people live, and where should they live? Our model would be … a cityscape that allows people to stay at home.’

We must enable people with dementia to engage with the city. On our streets, as in building interiors, we should prioritise clarity of signage and routes. Buildings themselves with distinct identities may act as landmarks. Helen says that ‘we want to have freedom to go about our business’: ‘No matter where I go, I’m constantly looking for a sign.’

Architects of public buildings are now required to consider physical accessibility from the outset. The same should be true for dementia. As Lesley says: ‘Why would you not make a public building dementia-friendly from the word go?’

 

6. Sometimes I need help.

Andreas Kruse, in ‘Dementia as a Cultural Challenge’, argues that care for people with dementia should have three components – professional care, care within the family, and care from the community – all guided by ‘the principle of shared responsibility’.

Helen carries a card that says: ‘I have dementia. I like to be independent, but sometimes I need help.’ We can all provide this help. In smaller towns, neighbours may assist neighbours with dementia by noticing if they have wandered far from home or by responding sensibly to agitated behaviour. In cities, if the person behind the till in the supermarket or the ticket inspector on the bus could be trained to recognise signs of confusion and to react accordingly, the individual with dementia could be empowered to continue to participate as an active member of society. 

 

7. We need connections.

Isolation is endemic among people with dementia. This is an important emotional issue but also a significant risk factor for health. Helen laments: ‘The general public do not see us … we want to be part of normal society.’

Care environments should proactively engage with volunteers, neighbours and people of all ages in their local communities. For example, there is much anecdotal evidence to suggest that interaction with babies and children enriches the lives of people with dementia – a hypothesis supported by a number of studies into intergenerational engagement. Sabina Brennan, a dementia expert, says: ‘We should care for our older adults in the same places that we care for our young children.’ Successful models for this exist in Japan and Holland.

In a care centre we visited in Camden Town, London, the sitting room and activity room were empty but there was a large crowd gathered around a small window at the end of a corridor. It was the one place from which you could see teenagers who had crept out at the back of the school for a cigarette and some flirting.

 

8. Liberty is limited.

Atul Gawande, in his book Being Mortal: Illness, Medicine, and What Happens in the End, outlines the changes that have occurred to the contemporary family unit and the effect that this has had on care for older people. Previously, ‘the elderly were not left to cope with the infirmities of old age on their own. It was understood that parents would just keep living in their home, assisted by one or more of the children they’d raised.’ Global economic prosperity now rewards those young people who are prepared to ‘follow their own path – to seek out jobs wherever they might be’.

Describing what he calls the ‘veneration of independence’, Gawande shows that both children and parents seek out this separation after the intense period of child-rearing. This principle of independence works in a fashion until the final period of high dependency, when people are often obliged to commit themselves to institutionalised environments. For Gawande, modernisation does not demote older people; it demotes the whole family in favour of individual liberty and control, including the liberty to be less beholden to other generations.

 

9. Embrace technology.

Assistive technologies can promote independence, autonomy and confidence for a person with dementia and limit their exposure to risk. Movement and energy-consumption sensors within the house or wearable location devices are very common and allow a degree of independence to be retained. Crucially, tools like these may reassure and empower carers. As June says: ‘I don’t put him in a home in case he gets lost, because I know I’ll always be able to find him.’

 

10. Daylight is critical.

Almost everyone we spoke to about dementia agreed on the importance of abundant daylighting and minimal glare. According to June, ‘For very many people with dementia, just increasing the light level in the place where they live can make more difference than medication.’ Helen is emphatic: ‘Light is so important.’

Dick Swaab, in We Are our Brains, points out that night-time restlessness is the main reason why people with dementia are committed to full-time institutional care. The person’s partner can no longer cope with the disruption. The combination of high levels of light during the day and melatonin supplements greatly ameliorates night-time restlessness by helping to regulate circadian rhythms. The design of buildings with high levels of daylight must go hand in hand with careful management of that light to minimise confusing glare and shadows.

Like all of us, people with dementia need a connection to the outdoors. They should be enabled to go outside freely, to feel the sun on their skin, through the provision of safe external space. The effect of vitamin D on improving bone density in older people is well known. Swaab points out that vitamin D deficiency increases the risk of depression in older people.

 

11. Simple design interventions can prolong independence.

Design for neurological impairment should be as integral to architecture as design for mobility. Helen explains the challenges posed by public buildings with ‘bathrooms tucked away at the back’ for someone who experiences navigational difficulties.

In her own house, she has made simple changes to enable her to continue to enjoy cooking. Instead of storing items throughout her kitchen, where she might misplace them, she has a unit containing all the basics she needs to cook that she moves around the kitchen with her.

In communal facilities, we should minimise noise and visual confusion. We should accept that people with dementia are likely to be older adults and so should provide bathing facilities and furniture that reflect this. Good design empowers people to care for themselves for as long as possible. 

 

12. Minimise visual and physical barriers.

Routes should be composed to allow people to move through a building independently without getting lost. Where possible, the number of doors should be reduced. Clear visual connections between spaces facilitate passive surveillance, and the removal of physical barriers, such as locked gates, reduces the potential for frustration.

‘Wandering’ is a characteristic behaviour of many forms of dementia. Instead of trying to prevent wandering, we must strive to create an environment in which it is safe to wander.

Spatial sequences and visual links should be logical. For example, if I wake up in the middle of the night, it is likely to be because I need to go to the toilet. If I can see the toilet from my bed, this acts both as a visual memory prompt and a navigational tool. If I can see where I want to go, I can work out how to get there.

 

13. Learn from other disciplines.

Maintaining a constant dialogue with expertise outside our own field is key to developing a better understanding of dementia. The best work is done when architects speak directly to people with dementia and their families, and collaborate with experts in other fields – from neuroscientists, carers and graphic designers to anthropologists, philosophers and furniture designers. 

For example, Hugo Spiers and Kate Jeffery shared their findings from neuroscience: that within the hippocampus of our brains, cells exist that allow us to map space, find our way through it and locate memories in it. They explained that ‘place cells’ provide us with an internal mechanism of mapping space; ‘head-direction cells’ work as an internal compass and signal the direction in which we are facing; and hexagonal ‘grid cells’ create lasting matrices in our brain that indicate our position. It seems as though our position in space and our episodic memory are closely linked. The plaques and tangles that cause Alzheimer’s disease usually affect the entorhinal cortex and the hippocampus before moving out towards the outer cortex. This may explain the changes to our abilities to navigate and remember.

 

14. Maintain communication between designers and users.

The way that we design, build and manage buildings for people with dementia should allow more collaboration between architect, builder, client and end users from the outset.  Given the unique sensitivity of this client group to environmental factors, we would expect, as architects, to stay very close to them as we design, and they use, these buildings. The opposite is often the case, and buildings are designed through very abstract processes governed by guidelines and regulation rather than empathetic understanding. The title of our piece, Losing Myself, is a commitment to imaginative engagement on the behalf of the architect.

Most architects have experienced seeing a building they designed being used in a way that they did not expect. It is easy to criticise the client or management, but it is more useful to ask what it is about the design of the building or the handover process that has contributed to the situation.

As our understanding of dementia changes, so our practices and facilities of care may need to transform accordingly. This requires continual constructive dialogue between architects and users of buildings designed for dementia care.

 

15. Expand our modes of drawing.

Allocentric spatial reasoning relies on a sophisticated form of mental manipulation whereby the world is assessed by examining and imagining the relationships between objects. By contrast, in an egocentric spatial model the world is understood only in examining the direct relationship between objects and the self. Your ability to look at the room you are now in and understand it from another viewing point is a good example of allocentric thinking.

Sebastian Crutch, a neuropsychologist, argues that a loss of allocentric understanding is common to all forms of Alzheimer’s disease. The problem for architects, then, is that our primary methods of conceiving and representing space through the plan are fundamentally disconnected from the way in which its occupants experience space. If our occupant has dementia, a further degree of separation is introduced. Perhaps the way that we represent a building needs to take into account the experiences of its users as they build their own spatial understandings of the environment that we are making for them. 

 

16. Live with purpose.

Care and respite buildings for people with dementia must accommodate and facilitate meaningful activity, fulfilment and creativity: for example, through singing, painting, dancing, gardening or cooking. In Hammond Care facilities in Australia, people spend time cooking; if the care staff believe there is a food hygiene issue, they simply serve a different meal.

Atul Gawande stresses the value of giving older people a living thing to care for. When we came to meet the community of the respite centre in Dublin, the staff had persuaded everybody there that they had a role as volunteer carers. Therefore everyone was part of an active caring community with no passive recipients. A life with meaning can continue following a diagnosis of dementia, and architecture should support this.  

 

Mentioned above

(in order of appearance)

Helen Rochford-Brennan is chair of the Irish Dementia Working Group and vice-chair of the European Working Group of People with Dementia. Helen has early-onset Alzheimer's.

Lesley Palmer is Chief Architect at the Dementia Services Development Centre, University of Stirling. 

Jacqui Carson, the manager of an assisted living centre, is quoted in Atul Gawande's Being Mortal: Illness, Medicine, and What Happens in the End.

Professor Tom Kitwood, a social psychologist and expert in dementia care, was the author of a number of publications on the subject, including Dementia Reconsidered: The Person comes First.

Professor Andreas Kruse is a psychologist and gerontologist. He has written widely on dementia, including the essay Dementia as a Cultural Challenge in Lost in Space: Architecture and Dementia. 

Professor Sabina Brennan is co-director of the Neuro-Enhancement for Independent Lives (NEIL) Research Programme at Trinity College, Dublin; and director of the NEIL Memory Research Unit. 

Dr. Atul Gawande is a surgeon, writer and public health researcher. He wrote Being Mortal: Illness, Medicine, and What Happens in the End. 

Professor June Andrews is Director of Dementia Services at the Dementia Service Development Centre, University of Stirling. 

Professor Dick F Swaab is a physician and leading neurobiologist. He wrote We Are or Brains; From Womb to Alzheimer's. 

Dr. Hugo Spiers is a cognitive neuroscientist at University College London. 

Professor Kate Jeffery is a neuroscientist and leads the Jeffery Lab at University College London. 

Dr. Sebastian Crutch in a neuropsychologist. He is Project Director at the Dementia Research Centre at University College London.