In recent times the general media has supplied us with increasing snippets of news and predictions about the future of social care for Dementia sufferers. Interestingly enough, at the same time, a whole raft of well-produced television documentaries based on the so-called ‘D’ word, Dementia, has hit our small screens to provide viewers with some significant revelations. Eric Thorn has been studying these media gems and reviewing what the future may hold for this important sector.
It first grabbed my attention when I was introduced to a lady who had been diagnosed as suffering from a form of Dementia at the young age of fifty-seven (57). For as long as I can recall, I have somehow been aware that Dementia can affect persons of any age.
And, literally as I write this, the BBC (British Broadcasting Corporation) are reporting the passing of a two-year-old girl from West Lothian, Scotland. Mirryn developed Batten disease, which is a rare form of childhood Dementia reportedly affecting some half dozen or so babies and young children each year in the United Kingdom. That is by far the youngest case of someone dying from Dementia that I have ever come across. The diagnosis of Mirryn (may she rest in peace) certainly underlines the fact that age is no barrier to the onset of Dementia. Readers wishing to read the full story should visit https://www.bbc.com/news/uk-scotland-edinburgh-east-fife-48749008 which, hopefully, will still be live.
Age is no barrier for what has now become the ‘D’ word, rapidly replacing the ‘C’ (cancer) word. This really came home to me whilst watching a series on Channel Four Television, The Restaurant that makes Mistakes. It was apparent that most, if not all, of the stars of the show had been diagnosed with some form of Dementia at an early age. Certainly well below their anticipated retirement ages.
It has been estimated that some 42,000 (that’s right: forty-two thousand!) people under the age of 65 living in the United Kingdom suffer from some form of Dementia. It is my understanding that this estimate is based on the number of persons actually diagnosed as having Dementia; it is not known how many people may have not yet realised they have early onset Dementia.
In Wales alone, it has been estimated that some 2,000 (two thousand) individuals who have not yet reached their 65th birthday suffer from some form of Dementia that has not yet been diagnosed. In fact it has been suggested that some sufferers could have visited their General Practitioner and, in view of their young age, not even had the possibility of Dementia considered. For more details on this news report please visit https://www.bbc.com/news/uk-wales-48687757?intlink_from_url=https://www.bbc.com/news/topics/cdl8n2edgrgt/dementia&link_location=live-reporting-story.
It has been thought that one reason for not detecting the onset of Dementia at an early age is that the symptoms have become hidden in some way. The good news, however, is that researchers involved in a scheme called The Mopead Project have come up with some assessment about how to advance patient engagement for the detection of so-called undiagnosed cases of the most common form of Dementia, ie, Alzheimer’s Disease. They have published their findings in the Journal of Alzheimer’s and Dementia, and their report may be read online at https://www.sciencedirect.com/science/article/pii/S155252601930072X.
The Restaurant that makes Mistakes was an intriguing experiment in the City of Bristol. The Mayor of Bristol is on record for publicly declaring that he would like Bristol to be known as a Dementia-friendly City. The pop-up restaurant was no doubt an essential corner stone in the foundations of building the mayoral dream of a Dementia-friendly City, as it was entirely staffed by persons suffering from some kind of Dementia. Of course, the experiment made it abundantly clear, especially in its five-word name, that mistakes are likely. So, all patrons were aware that anything could go wrong.
Now that a traditional taboo surrounding Dementia is fortunately being passed into history, it is probably only a matter of time before many places follow the example set by Bristol. The UK government has already declared that they would like to see Dementia-friendly communities created in order to make daily living and activities easier and more accessible for people living with Dementia. Such communities should include not only restaurants that make mistakes, but other shops, services, places of worship, and so on. The Mayor of London has declared that he would like to see London become the first ever Dementia-friendly capital city and, contributing to that, he is hoping that all London bus drivers will be Dementia Friends by the year 2022 (https://www.dementiafriends.org.uk).
Seriously Dementia-friendly, on Channel Four The Restaurant That Makes Mistakes showed how, with the right support and small adjustments, many people with Dementia can continue to be independent as well as contributing to the workplace.
Alzheimer’s Society (https://www.alzheimers.org.uk) partnered with this pioneering experiment. Fourteen (14) volunteers all diagnosed with some form of Dementia took part. Now that transmission of the series has ended, though I suspect it may be repeated, it will be interesting to see if there will be a follow-up, and also whether it has served to alert employers to the fact that Dementia is not something to be swept under the carpet.
It should be acknowledged that there are a great many forms of Dementia, of which the most well-known is Alzheimer’s. So, the word Dementia is really a generic term embracing all of these facets. The most common symptoms of any Dementia are memory loss, especially short term memory loss, difficulties with thinking and problem solving, and technical hitches with verbal communication. The next most common symptoms are probably changes in the person’s frame of mind or/and their general demeanour.
Dementia symptoms very often come on in a small way, and are usually not noticed to start with. But as time goes on, the symptoms become more severe and manifest and, in a great many cases, start to have an effect on the daily life of the sufferer.
It has to be appreciated that many people, and that does include younger people, with Dementia can still undertake quality work. As one younger sufferer remarked during a televised interview, “Do not put us out to pasture!” The main hindrance for them is their short term memory loss.
And that is the underlying reason why, in experiments such as the Bristol restaurant, mistakes can be made. Due to short term memory a server brings latte instead of cappuccino coffee, or delivers main courses to table six instead of table nine, or forgets to dispense a glass of drinking water for a thirsty patron.
It ought to go without saying, but I will say it anyway, that these nominal errors should be automatically overlooked by the understanding customers who have been forewarned and had a choice not to patronise the experimental venue that makes mistakes. As an afterthought, it even occurs to me that staff in so-called normal restaurants and eateries can make mistakes. My wife and I have certainly experienced being served the wrong order on at least two occasions.
Sing for supper
Time and time again it has been shown that music is an amazing medium for acting as an aide memoir for Dementia inflicted individuals. One such person known to me almost constantly responds supper if I quote the famous nursery rhyme Little Tommy Tucker sings for his… But when her music therapist comes along with his Yamaha keyboard, she is able to sing the entire rhyme. In my imagination, I can visualise Marian singing her heart out with gusto in days now long since gone when she was a prominent member of a church choir.
Our Dementia Choir was a mini series of just two television programmes transmitted by the BBC during spring 2019. Fronted by the award winning actress Vicky McClure, and co-produced by the Open University, Vicky brought together enough Dementia volunteers to form an excellent choir that staged a full-scale concert in Nottingham. Probably the best shop window for music therapy that I have ever come across!
But it was not just an enjoyable portion of televised entertainment. No, the productions included pieces of enlightening information that many viewers may have been previously unaware of. Nutshells of pioneering science research and the very latest brain scanning expertise were diplomatically edited in to positively illustrate that music really does stimulate brains impaired in some way by Dementia.
Our Dementia Choir included brief shots of interviews with music therapists coupled with video blogs of genuine patients receiving and responding to the music therapy they were receiving.
One such video was recorded at a nearby MHA Care Home with Dementia specialisation. Viewers were able to glimpse first hand just how much preparation and care goes into the one-to-one sessions that music therapists are involved with on a day to day basis.
MHA Care Homes are providing pioneering music therapy to people living with Dementia. They were one of the first organisations to undertake this challenge and, according to their website (https://www.mha.org.uk/news/media-centre/) is actually the leading employer of music therapists in the UK with their team of highly trained, award-winning therapists.
Around the UK, in recent times a number of so-called memory cafés have been opening for the benefit of Dementia sufferers. Mainly in churches and other local community venues, these generally stimulate memory by having a good sing-song. As most of those attending tend to be senior citizens, the repertoire inevitably includes old time songs. I have it on reasonably good authority that Roll out the barrel and Down at the old Bull and Bush are highly popular memory joggers for these friends, closely followed by It’s a long way to Tipperary.
And another BBC news item, just a few weeks ago, reminded us that many of these venues have their community singing accompanied by piano music. Which led the news item into revealing to us that an ex music teacher from Buxted in East Sussex, who has been diagnosed with Dementia, has received in excess of two million hits on the Twitter social platform (yes, I did say two million!) for his piano playing which revives his thinking and helps him to get through otherwise difficult problems caused by his ailment. See for yourself at this link which includes a video for those wishing to experience the music for themselves: https://www.bbc.com/news/av/uk-england-sussex-48761332/man-with-dementia-s-piano-playing-shows-healing-power-of-music.
In a previous article for Maintenance and Equipment News for Churches and Schools I covered the topic of music therapy under the title A new understanding. Please check this out at http://www.cwponline.co.uk/a-new-understanding/.
Down the shopping street
It has been clearly shown that music therapy is ideal for stimulating the brains of those suffering short term memory loss due to Dementia.
But other methods of helping are constantly being tried. The Victoria Derbyshire programme on BBC television has revealed an idea originally used in the Netherlands: a reminiscent shopping street. Such a street is now being patronised by Dementia care residents at a care home in Birmingham.
Robert Harvey House were able to build a yesteryear memory street that they christened Sensory Street. Big enough for people to actually use, it is complete with tea room, confectionery shop, butcher’s shop and post office, all of which help stimulate its residents. It is particularly helpful to those living with Dementia as it helps to bring to mind high streets of their childhood.
Just about five years ago, I wrote about my personal introduction to Dementia under the title Dementia is the word. It is highly unlikely that this is still available online, but I will be happy to email a copy to any interested reader who emails me a request to the address at the foot of this article.
Visual impairment and ageing and cognitive decline is part of a research project based on experience in a memory clinic. The scientific report has recently been published on the web. Interested readers should find it online at https://www.nature.com/articles/s41598-019-45055-9.pdf
Eric A. Thorn