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Dementia care


dementia and design, share their experiences and begin to build a rich repository of knowledge to inform architects, planners, developers and service providers and explore gaps in current research and policy.


The programme was co-designed and delivered with Agnes Houston, a world- renowned dementia activist from Scotland. In preparation, people living with dementia made their learning and support needs known. The venue was audited using a checklist entitled ‘Is this inside space dementia enabling?’, which was produced in partnership with Dementia Empowerment and Engagement Groups (DEEP) and the Edinburgh Centre for Research into the Experience of Dementia (ECRED) at the University of Edinburgh.


The Design School addressed why design is important, the impact of poor design and feelings associated with disabling design. Those who attended shared their own very personal stories and experiences. There were then sessions covering design principles and values, which were followed by a more detailed look at lighting, air quality and sound.


There were some very emotional moments at flashes of insight into why someone had felt anxious, upset or angry in a noisy cafe. Another person learned about the potential benefits of improving the air quality in their bedroom. The discussions towards the end of the day moved from the personal to the collective and so were then shaped by equality and human rights. The question was asked ‘How can people living with dementia be routinely involved in design and helping to produce design evidence?’. Human rights in relation to access and design were of great importance to the group who attended. Do human rights feature routinely in other design learning sessions? This is a great example of a co- produced session offering new insights into the ways in which design is discussed and valued where dementia is a feature. The issue of human rights and the rights of people with dementia to be part of discussions about the places and spaces they use is relatively new. People living with other disabilities have successfully made this case, but people with dementia do not feel that this is the case in relation to removing disabling design. The range of advice available is not quality controlled and can be out of date or based on assumptions about dementia. People living with dementia deserve better than this as do the people who work in care settings.


As a result of this new approach, people living with dementia have co- designed the audit tolls that were referred to previously and have co- authored a peer reviewed journal paper on accessible design, dementia, equality and human rights2


and co-written books


on specific topics such as sensory changes in dementia and design.3 It is this link between design and other aspects of life, highlighted through the lens of the experiences of people with dementia that can provide us with real insights that otherwise would remain hidden. We need environments that enable decision-making, independence and choice, even as people become more impaired as a result of the changes that dementia brings.


In order to achieve this, we need to speak to people with dementia. For example, a hidden sense, which is rarely addressed, is diminishing proprioception. Proprioceptors are sensors in all the muscles and joints that feed back to the brain so we know, without thinking about it, where our limbs are. This is impaired by ageing joints and replaced joints, so older people are often less sure where to step and can easily bang into things in small or cluttered spaces.


If this affects you, you are more likely to walk around looking at the ground because you need to see where you are putting your feet. Balance can also be affected. When dementia is a factor, this can make falls more likely and ready environmental compensators need to be on hand. Design solutions such as floor level cues can be useful for some people but don’t work for everyone. Speaking to people with dementia will reveal the many ways in which people manage this.


Conclusion


Poor design makes life with dementia harder than it needs to be. However, this isn’t because people are being deliberately thoughtless. Indeed, poor design can be the result of good intentions. Without involving people with dementia this is always a risk. We are constantly learning new things about dementia and the environment and we can problem solve and design together to eliminate most of the problems that people with dementia experience. It is time for care environments to make a place for people with dementia in ongoing discussions on accessible design. This will result in spaces that function for everyone and ensure that the function of the place is to enable the people who reside there.


March 2020 • www.thecarehomeenvironment.com


References 1. Christie J. 2007. Ethics evaluation and dementia. In: Innes A, McCabe L (eds). Evaluation in Dementia Care. London: JKP, 2007.


2. Houston A, Christie J. Talking Sense. The impact of sensory changes and dementia. Sydney, Australia: HammondCare, 2018.


3. Houston A, Mitchell W, Ryan K et al. Accessible Design and Dementia: A neglected space in the equality debate. Dementia 2020; 19(1): 83-94.


Resources


l For further information on the Dementia Design School go to: www.dementiacentre.com/ services/education/dementia- design-school


l To download ‘Is this inside public space dementia-inclusive? A checklist for use by dementia groups’ go to:


http://dementiavoices.org.uk/ wp-content/uploads/2017/04/ Inside-checklist-VFINAL.pdf


Dr Julie Christie


Dr Julie Christie has worked as a nurse and a social worker and has managed integrated health and social care services. She has a PhD that focused on resilience and dementia. Dr Christie is the service manager (international) for HammondCare, an international charity that aims to improve the experience of dementia and is based in Glasgow, UK.


TCHE 19


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