First printed in the Irish Independent June 1 2016
When shoe shiners give you stock market advice, it’s time to sell your shares. When taxi drivers advise on where to buy abroad, it’s time to stay home.
But when your spam switches from Nigerian businessmen, cheap Viagra and belly fat pills to cures for Alzheimer’s Disease, then it is time to stand up and pay attention.
And none too soon. According to the Alzheimer Society of Ireland, the number of people living with dementia in Ireland is greater than 50,000 this year. And that is probably a serious underestimation of the problem, since there is no official register of people with dementia.
A large proportion are cared for by family members and it is generally acknowledged that family carers do not routinely get support from State services as a consequence. Add in to that mix the medical postcode lottery that persists across the country and it is obvious that certain black spots have huge implications, not only for sufferers of dementia but also their carers.
Unlike minding a family member with, say, cancer, caring for dementia is treated both as something the family can manage and also as an unspoken burden. Reaching breaking point is therefore a very real concern as it creeps up despite denial and the turning of blind eyes.
There is still a resistance to acknowledging dementia. We all know we age, deus volens, and we all know there is a heightened chance of dementia creeping in as we age; yet there is still something shameful about the condition. People with dementia are kept under lock and key and sometimes that is not a figure of speech.
What is even more worrying is some 4,000 of those are considered young, under 65 and living with early onset dementia.
Pat Fleming was one of those people, the early onset ones. He developed early onset Alzheimer’s living in the UK in his early 50s. A single man, his condition initially came to light when his family noticed erratic phone conversations before his diagnosis became apparent and they brought him home. Christy, his brother and long-time wellness practitioner, stood up for his brother. He refused to let him be pushed into the background even as Pat lost basic communication skills. Soon Pat was unable to tell anyone his name. He smiled and was happy but words eluded him like forgotten poems.
Christy assembled a powerful team of healers around his brother, from music to holistic healing, from drama to massage. He made a documentary about these treatments and the positive impact they had on Pat. At one point in the documentary, Pat lapses into conversation with an actor friend.
They speak no language known to man but a lively interaction ensues – indeed it is hard to consider the gobbledegook exchange as anything but real conversation. The beauty of being able to converse without racking his brain for words is powerful for Pat. Later in the documentary he sings too and his joy is very obvious.
Pat sadly died two years later but Christy is still fighting the fight – to help both sufferer and carer. He has planned a free seminar on June 25 in Dublin to help both. This has become his passion and cause.
Music is one of the last memories to go. Sr Bernadette Sweeney of St Agnes School in Crumlin recognises this powerful opportunity. Previously she was responsible for bringing strings into her school and forming an orchestra that featured in an RTÉ documentary.
This time around she has founded Memory Lane, a choir for those with dementia. When questioned if the choir might be a sop to amuse the members, she strongly denies that the choir is about tokenism. Her passion when speaking of the positive impact of music is persuasive and three days later I attend a rehearsal of the choir to see for myself.
The choir is made up of people with dementia and their carers. There is a song book with more than 100 lyrics. There is a professional music teacher and a pianist. This is certainly no gesture.
I am given a songbook and join in with the familiar songs, mostly taken from the last century.
The choir is very tuneful. I sit beside a potential new member; we met on the way in. He tells me I have a sweet voice. I am pleased; singing with this choir is a very happy experience.
Afterwards, I mingle with the carers and their loved ones. One woman in particular engages me in conversation. She is her mother’s full-time carer and her eyes rarely stray anywhere else. I suggest she attend Christy’s seminar but she checks herself. Can she bring her mother as there is no one else to mind her? I confirm her mother is also welcome, realising with a jolt how imprisoned she feels.
It is time to review the incarceration of both sufferer and carer and swap that prison for a prism through which both can experience some compassion and joy. To attend the free seminar on Disrupting Alzheimer’s, please visitor email disruptingalzheimers@ .