Living and dancing with dementia
REPORTER DAVID MEDCALF FOUND HIMSELF SINGING ALONG WITH SOME OLD FAVOURITES AT THE CHRISTMAS SESSION OF ‘MUSICAL MEMORIES’ IN GREYSTONES, RUN BY WICKLOW DEMENTIA SUPPORT. HE ALSO SPOKE TO SOME OF THOSE PRESENT.
IT is one of the most unlikely Christmas rave- ups of the season. The ‘ Musical Memories’ session at the hall beside St Patrick’s on Church Road in Greystones has been a feature of the local social scene for the past four years.
Those who come to enjoy the music each Friday file into the big room after the early morning badminton players leave the court. The net and the shuttle-cocks make way for a group who have dementia in common.
Some are diagnosed with Alzheimer’s disease or some other form of degenerative brain condition. Others are the carers who ensure that the first mentioned may continue to live in their own homes rather than reside in hospitals or nursing homes.
Also present are the volunteers who make Wicklow Dementia Support a source of joy to those who are touched by the organisation.
This is a social occasion and the fact that some of those present may have difficulties with recalling names or keeping track of current events is irrelevant.
People take part in order to enjoy themselves and everyone appears to have a smile on their face.
Though the hall is bright and clean, the set-up appears at first glance to be a trifle formal, with tables laid out in horseshoe formation. This could perhaps be a business meeting or maybe a seminar but in fact it is nothing of the kind.
Instead of minutes and reports, there are plate-loads of biscuits to hand and the Burco is coming cheerfully to the boil.
A shadow, a stigma, hovers around the word dementia, leaving your reporter in some trepidation as to what he might find here. He need not have worried. The chatter as everyone waits for the formalities to begin is nothing out of the ordinary.
The weather. shopping. family. property prices. divorce. The only slightly glum note is struck by a woman who confides that she has been barred from driving because of the dementia. She fully realises why the car has gone from her life but she still resents the loss of independence. So it has come about that Fridays in the hall have become very important: ‘It is great to have this to come to,’ the lady muses. ‘I love meeting with people.’
The man beside her is of similar mind: ‘I come here every Friday and enjoy every minute. It’s the friendship – everyone talks to everyone.’
And while they are still fit to get out and about, Wicklow Dementia Support means that there is no reason why they cannot continue to have a social life. Today, everyone is all set to be entertained by singer, guitarist and sometime songwriter Ray Cranley. He has donned a very Christmassy red shirt to mark the season, with his guitar is all tuned up and ready to play to a familiar audience.
‘I know all the old songs, because I am old myself,’ is Ray’s twinkle-eyed claim, and it is no idle boast, as he has been playing to old folk for at least 46 years. He appreciates the reaction his songs trigger at the ‘Musical Memories’ sessions: ‘It is fantastic to see the faces lighting up’. But
spontaneous applause when the Nippers march to the top of the room – it is a very touching moment. A dozen children from the Greystones Montessori pre-school which meets elsewhere in the same building, they are impossibly cute and guaranteed to raise the spirits of any grandad or grandmother. Led by their teachers Emma Sothern on ukulele and Kelly McDonald, the kids take everyone through a spirited rendition of ‘ Twinkle Twinkle’.
After they take their bow, Ray strikes up a lively ‘Walking in a Winter Wonderland’ and the party is truly under way as the dancing soon begins. The women are first up but the men, with bashful boyish grins, are soon coaxed into joining them by the indefatigable Mary Darcy. Though much else may fade, familiar music and well-trodden dance steps are all but impossible to forget.
In the kitchen, over the washing up, your reporter has a word with some of the volunteers about their experience of AlzPals and the way in which it promotes a one-to-one friendship. Patte O’Reilly, a native New Yorker, recalls that she was assigned to a woman who would never remember her name from week to week. Yet Patte was still recognised as familiar and the two women would go for a walk through Avoca village, stopping at the Handweavers café for tea and chat. Yes, having dementia does not kill the desire for conversation.
Mike Fisher, who is the main organiser of the sessions at St Patrick’s, recalls how he was paired up with a man who enjoyed the outdoor life: ‘So we would go to Enniskerry for walks. He was fifteen years younger than me and he used to walk the legs off me, while he was well enough.’ While he was well enough. Each patient’s experience of dementia is different but there is no escaping the fact that the graph ultimately leads down.
Retired nurse Jenny Lewis is the DJ on the days when Ray Cranley is not in attendance, self-proclaimed benevolent dictator of the turn-table. She has been one of the AlzPals since 2012 and she speaks with clear affection of each of her succession of pals. There was the woman she visited once a week in her Bray home where they played country ’western music at high volume in the front room. Then there was a woman who could not speak beyond the odd word or half sentence but who still enjoyed trips to Cornelscourt or chapters from Jane Austen audio-books.
‘She had the most loving smile and she was happy. Volunteering is so fulfilling and everyone should do it. Music is the one thing you can use – I have seen it more than once. There are dementia drugs but they don’t work very well.’
Wicklow Dementia Support is addressing a condition which touches almost every family at some time or other. According to Mike Fisher’s figures, there are 1,600 known cases in the county, with perhaps 55,000 nationwide. Many of these are in full time care but the organisation’s mission statement is a declaration of humane intent: ‘ to support people with dementia and their family carers so the person with dementia can stay at home for as long as possible.’
The Greystones gathering is not the only regular on the WDS programme, though the format in St Patrick’s is a little different to the others. The social groups who meet on Mondays at St Peter’s parish centre in Bray or at the Dominican in Wicklow on Wednesdays prefer to play games instead of listening to music.
Maritta Murphy from the group in Wicklow Town reckons she has at least ten regulars and she stresses that they are not content to stay in all the time: ‘We went to the Bord Gáis Theatre for ‘War Horse’ and the Chinese restaurant in Wicklow is a regular haunt.’ The notion of heading out, being seen, exploring the world beyond the strict confines of home is one which appeals to Maritta: ‘As a society we underestimate what people with dementia can do. I have seen how people with dementia are all too often left without social interaction or without fun.’
Trained volunteers ready calling once a week, ready for a chat and a slice of cake, are often the ones who inject the missing fun, while also lightening the load of carers who are otherwise on duty 24/7. WDS runs carer support groups in Newtownmountkennedy and Bray which meet once a month to share experiences and expertise.
And, in addition to AlzPals, the organisation has a programme called ‘Meet and Eat’ under development, another of their simple but brilliant initiatives. The idea is that trained volunteers visit people with dementia in their own home once a week to cook and share a meal. Alternatively styled a social eating programme, ‘Meet and Eat’ has extended MDS’s presence from its established heartland in the north-east of the county along the coast to Arklow.
At her office in a business park on the outskirts of Bray, Wicklow Dementia Support founder Jenny O’Reilly sits surrounded by the posters and paraphernalia generated by the endless cycle of fundraising. The race nights, craft fairs, tea parties and bag packs all play their part, not only bringing in the cash, but also in raising awareness of the issue and the service which tackles the issue. Further funds come from the health service, from Pobal and from Wicklow County Council.
Dementia is experienced in every corner of Ireland, so she appears almost surprised that the rate of expansion of the organisation has been steady rather than spectacular: ‘We were established in 2010 and we are still very small,’ she muses, recalling that it all started at a public meeting in a pub in Delgany. Those present, with Jackie O’Toole to the fore, identified the lack of support to families living with dementia. The logic of this diagnosis led on naturally to the current programme of events and the AlzPals – the country’s first dementia befriending service.
Anyone wishing to volunteer, the number to call is 089-428 6928.