Yesterday was a pretty ordinary day for me. I woke up, left my flat, got a packed tube train with the other sardines, bought a newspaper on my way to the office, did some work, bought a sandwich, paid in a cheque at the bank, did some more work, then went to the cinema.
Perhaps kinder readers’ minds might be whirring out the thought, ‘my, what an exciting life this girl leads! How does she cope with the constant adrenaline which must suffuse her throughout the day…?’ Others among you may, however, share my own view that my day was a series of very ordinary events.
Such ordinary events, however, can easily turn into moments of fear and confusion when the person who experiences them has dementia.
In diary extracts provided by his wife Barbara, artist Malcolm Pointon describes vividly how dementia can close in and over everyday life: “Mind in a fog today… thoughts and actions slipping from my grasp… kept close to Barbara in the shops… just didn’t want to talk… head full of cotton wool.” Ross, a man in his 50s with early-onset dementia similarly told a conference organised by Alzheimer’s Disease International that “one time I was in Falkirk looking to buy a freezer when a seizure came on. Eventually someone helped me and asked me what I was looking for: ‘I don’t know but I’ll ken when I see it.’ They showed me round the shop and when we got to the freezers I said, ‘that’s it.’”
A potential way of increasing reactions such as those exhibited at the Falkirk white goods shop may lie in UK society becoming more ‘dementia friendly’. This term is often used to describe facilities that are designed with people with dementia in mind, and institutions such as Stirling University have made it their business “to assist any group or community what can be achieved on a sustainable basis”.
Last week, other institutions committed to following suit. An article published by the Telegraph newspaper outlines the promises of Lloyds Banking Group, Boots, and bus company First Group to train their staff to recognise signs of dementia and understand the needs of people with dementia with whom they might come into contact.
However, these three examples of commitment – although positive – are mere pigeon steps on the road to making the UK an accessible, inclusive, friendly society within which people with dementia can interact. This is in light of figures (according to the Alzheimer’s Society) that indicate there are around 800,000 people in the UK who have dementia.
The requirement for accessibility and inclusion is underpinned by the law; the Equality Act (EA) (2010) requires any “provider of services” to make “reasonable adjustments” to ensure that disabled people may use their services. The EA says that a person has a disability if they have a physical or mental impairment which has a long term and substantial adverse effect on their ability to carry out normal day-to-day activities, so dementia clearly fits the bill. However, like its predecessor (the Disability Discrimination Act 1995), the EA makes scant reference to people with dementia in its Code of Practice; indeed, its only reference is to state that “people with dementia, mental health conditions or mobility impairments may face different types of barriers.”
In our 2009 report Dementia: ethical issues, a key recommendation was that service providers should be made more aware of the need to make reasonable adjustments for people with dementia, and for the Code of Practice for the then DDA (now EA) to provide examples of good practice to help guide service providers who need to make such adjustments. Such examples are still distinctly lacking in the Code.
This is obviously not to say, however, that if such adjustments are made, then people with dementia should be forced to participate in society. Rather, society should be open to their inclusion.
When we gathered evidence for our report, it was also highlighted that society is not wholly ‘dementia unfriendly’. One consultation respondent told us that “I have no evidence that society perceives dementia in a negative way. We took my parents into restaurants and to the theatre for as long as we could and they were always treated with respect and kindness.”
Dementia has been the focus of much debate and media attention in the last couple of weeks, following the G8 Dementia Summit in London on 11 December. In one interview with Sir Terry Pratchett – perhaps the UK’s most vocal and well-known person with dementia – a question was raised about why dementia maintains a ‘Cinderella status’ in UK health and social care. Sir Terry reasoned that it is “because people are scared of it… no one cares about it to do much… because it’s not sexy. They’re old people; they’re going to die anyway, aren’t they?”
Elsewhere in the interview, Sir Terry outlined his aims for the future of dementia: “I’d like to see a war against dementia diseases. It’s about time we had it.” The following day, a comment piece by Professor Richard Ashcroft in The Guardian newspaper lambasted politicians’ overutilisation of such combative language. Whatever language is used, though, I think that the fact that the G8 discussed dementia seriously (albeit perhaps imperfectly), and that news outlets widely reported on its findings, can only be positive steps. At least it gets everyone talking; a surefire step towards society and its institutions becoming more dementia friendly.
The last word on this – for this blog, at least – is to be given to one of our consultation respondents to the 2009 report, who observed that “the time for a person to cease to participate in everyday community life is when it becomes distressing and fearful for the individual.”
When everyday community life fully adapts itself to the needs of people with dementia, that day will be extraordinary.