The story of the Two Crabs tells a tale of a mother and baby crab walking across the sand. The mother crab scolds her child for walking wrong, telling him to walk more gracefully. The small crab cries as he doesn’t know how and asks his mother to show him. As it turns out, she is unable to gracefully walk herself. She makes demands and expects her off-spring to do the right thing when she cannot do so herself. This fable reflects the perennial cries and eager encouragements for dementia-readiness.
Policymakers, academics, and service providers are the first to encourage people to embrace dementia and prepare for the changes that will inevitably come with it. We’re the first to advise; spending decades on research, only to churn out the same recommendations. We should all be dementia ready. But how well do we ourselves navigate the shifting sands of social change which will see many of us managing cognitive decline in coming years? Like the mother crab in the story, we have a duty to lead, teach and guide society to the standards that we recommend.
So, what exactly are those standards?
People are encouraged to future proof and make their homes dementia-ready, accessing available information and grants to do so. However, as my Foundations’ research called ‘More than Marginal Interest: Dementia in Local Housing Policies’ (opens new window) showed, only 44 out of 343 local housing assistance policies have a specific grant for people with dementia and only 3% of the national Disabled Facilities Grant (DFG) programme is spent on people whose primary condition is dementia, this seems insincere. How can people be expected to make their homes ready, when local and national policy makers neglect their own future homes or to formulate dementia ready policies?
Housing authorities must do better in formulating dementia ready policies. They may learn from other crabs who are already walking more gracefully in Oxfordshire, North Somerset, and Worcestershire to name but a few. These authorities have introduced dementia-specific grants to provide options and information to people living with dementia in their own home.
Just having a policy is not enough. We know from the Disabled Facilities Grant (DFG) Review that the grant and the professional expertise that comes with it is a hidden benefit. We must all get better at making services and information accessible and visible. Having help available is good, but if you can’t find it, it falls victim to tokenism. This is where health and housing providers can inspire, educate, and encourage. Providing information hubs, professional advisers at the point of contact, some local knowledge particularly on the diagnostic pathway, will ensure that people are aware of what they can do as early as possible.
But knowing what people can do requires expertise. We expect people with dementia and their families and carers to choose to change their homes, without being educated on these choices ourselves. Professional training for dementia design is needed for housing professionals and practitioners to effectively promote what works. But of course, “what works” isn’t just a professional endeavour, it’s also based on personal experience.
Culture, religion, ethnicity, and personal preference are crucial elements of people’s considerations when adapting their homes to suit their needs. By ignoring these elements, we assume that there is only one standard of dementia readiness, when in fact, being dementia ready must incorporate this kaleidoscope of experience if it is to be dementia ready for the many.
Being a “dementia friend’ and calling it a day doesn’t really cut it. Yet many service providers have used this awareness raising scheme as “proof” of being dementia trained. Being dementia ready requires more. It requires proactive, regular training on dementia-design issues at a professional level; and how to engage with different communities with dementia at a personal level. For example, the DSDC’s Training for Dementia Design and LGBT Foundation’s Bring Dementia Out programme are just two places to start.
How can we improve?
And how can the mother crabs amongst us – the “experts,” pave the way for our society of baby crabs through this training? How can we set a good example, reassuring society that we can lead the way to dementia readiness? We can do so by involving those with dementia and their family and carers in the creation, implementation, and monitoring of these services. Dementia is a pandemic, and this year has taught us that we were not ready for it. We need to invest in better dementia inclusive policies and services, so we are more resilient, responsive, and better resourced when it touches us.
It is up to us, the designers and providers of these services, to lead. Awareness raising, recommending, and encouraging is all well and good. But getting Dementia-ready really deserves more than fine words. The recommendations from Lord Best’s recent APPG Inquiry report deserve being given substance by leaders and practitioners in housing. We seek better engagement with the health and care system in our undoubted ability to prevent costly interventions in people’s lives but struggle to make our engagement with one of the most pressing priorities in the health and care system a reality. Formulating dementia inclusive policies, listening to how our customers experience their lives, ensuring we are up to the job - these things are not far-fetched or out of reach. Like the mother crab in the story, we, as a sector, must walk the walk before we give the talk; or dementia readiness will remain an aspirational report recommendation rather than a reality.
To view Yasmeen’s presentation at the Housing LIN HAPPI Hour session on dementia entitled, ‘Retrofitting our housing for dementia-readiness’, click here.
And, if you found this blog of interest, you can also read a range of other resources on housing and dementia on the Housing LIN’s dedicated webpages, including further information on the APPG Inquiry.
Lastly, if you would like to find out more about how the Housing LIN can support you develop your housing for older people strategic vision and/or operational plans to meet the future accommodation needs of older adults, including for people living with dementia and their carers, please email us at: firstname.lastname@example.org