Six months ago Michael Rain couldn’t talk about what he and wife Linda had been going through.
Since the day she was diagnosed with early-onset Alzheimer’s, the 63-year-old would turn the page of his newspaper rather than read an article about dementia.
Acknowledging how much their lives had changed and what the future might hold was just too painful.
But a chance meeting with Carol Elliott in a supermarket car park allowed a little shaft of light to pierce the darkness.
Today the Rains are taking part in a weekly group session they wouldn’t miss for the world.
And as they sing their hearts out – surrounded by the many new friends they’ve met – they’re both smiling.
‘Alzheimer’s is a horrible word,’ says Linda, 60, from Drayton.
‘Michael couldn’t even talk about it. I felt as if I was on my own.’
Michael adds: ‘I’ve got people I can talk to here. They are on the end of the phone. Everyone is friendly and there’s no “Look at him, look at her”.’
Around 25 people are sitting in a circle at this singing for the brain session.
Organised by the Alzheimer’s Society it takes place at Buckland Community Centre every Friday morning.
There’s a lot of laughter, supportive applause and group participation.
It’s an uplifting experience – despite the fact that what brings these people together is a far from cheerful set of circumstances.
Carol, the service support manager for the Alzheimer’s Society in Portsmouth and south east Hampshire, was manning an information caravan when she first met the Rains.
Following Linda’s diagnosis they were already receiving help from the medical profession. But Carol was able to tell them about support groups that might help.
Singing for the brain work on a number of different levels. As well as providing a much-needed social occasion, helping to prevent people from becoming isolated, singing also stimulates the brain.
Taking part often evokes emotional memories as opposed to cognitive thoughts and that helps to keep the brain active.
‘We’ve got one lady whose speech is quite poor now but as soon as we start singing her face lights up,’ adds Carol.
‘They go away feeling really positive and relaxed and happy. It’s been an amazing experience for people.
‘It’s about the feel-good factor and building existing relationships and new ones. They really feel part of a group again.
‘We have lots of fun. It’s about supporting people so that they can stay within the community and live well within the community.’
Linda was told she had Alzheimer’s in June after realising she’d been getting more and more confused.
She and Michael are both full of praise for what singing does for them.
‘It’s surprising what you can remember when you’re singing,’ she explains.
‘Reading a book is pretty hopeless now, I can’t remember what I’ve already read.’
There are around 2,500 people in the area who have been diagnosed with dementia. Around a further 800 are living with one of the many forms of dementia but haven’t been diagnosed.
Carol and her team of support workers and volunteers see more than 500 people a month at the various support groups they run.
And at this time of year, the Alzheimer’s Society expects calls to its helpline to increase by up to 20 per cent.
‘We all lead such busy lives that we tend not to see our relatives for a few months,’ explains Carol.
‘But everyone gets together at Christmas and says “Hang on a minute, mum is getting a bit forgetful, what’s going on?”
‘We tend to pick up on the signs a bit more.’
While everyone suffers from the occasional spate of forgetfulness, if that becomes a regular occurrence and begins to affect daily life, sparking confusion or distress, there might be something more serious going on.
‘Sometimes people can really hide the fact that there’s any problem for a long time,’ adds Carol.
‘It usually takes someone else to spot that perhaps there is a problem. It might seem quite difficult for people to go to their GP and say there could be a problem but that should be the first port of call so they can rule out anything else going on.’
The number of people living with dementia in the UK is expected to double in the next 10 years.
And it’s not just a disease that affects the elderly.
Carol regularly sees people with dementia in their mid-50s and the youngest person she’s in contact with is under 40.
Support groups and memory cafes are essential ways of keeping people with dementia stimulated and that prolongs their skills while providing social interaction.
New group sessions in Gosport and Hayling Island have just been launched but there’s always a demand for more.
The singing for the brain sessions have been running in Portsmouth since last July, thanks to a funding grant from the Big Lottery. But that funding runs out in six months.
‘I’m constantly being asked about starting up other singing groups but it’s having the funds to do that,’ adds Carol.
‘The support groups that we run are about providing peer support and it’s not just for the person with dementia, it’s for the whole family.’
It’s clear Sheila Heaword loves being with people.
She’s ready with a smile and eager to chat as she takes her place in the singing circle.
The 60-year-old was diagnosed with early-onset dementia at Christmas 2007. Sheila was being treated for depression but appeared to be getting no better and her memory was getting worse. Brain scans diagnosed the problem.
‘We were devastated,’ says Sheila, from Copnor.
Now husband Andy, 64, has to help her with everyday tasks and Sheila laments her lack of freedom.
‘I get very frustrated,’ she explains.
‘I want to get out but Andy doesn’t want to let me go in case something happens and I can’t drive any more.’
Andy adds: ‘We’re very fortunate having the early-onset team in Portsmouth. They’ve been really good and helpful to us and they put us onto the Alzheimer’s Society.
‘It can be difficult and frustrating at times but then life is like that so you’ve got to get on with it.’ They both enjoy the singing and Sheila finds it particularly helpful.
‘I was always out-going and this gives you confidence,’ she adds.
‘You’re with people that you know. Unless you’re in this position you don’t know what it’s like.’
‘SINGING KEEPS MY MIND FRESH’
Mick Levesque has had to piece together the events that led to him suffering a brain haemorrhage and then being diagnosed with Alzheimer’s. He was a long distance driver and had been out on the road one day when he became confused. Wife Maureen received a call because he was at the roadside on his way to Basingstoke and thought he’d had an accident. ‘I can’t remember it all,’ explains Mick, 68. ‘Bits come back but not the bits in between.’ It was while he was being treated for the brain haemorrhage that the neurologist also discovered he had vascular dementia and Alzheimer’s. Always a keen DIY enthusiast, Mick now finds he can’t do all the things he used to enjoy.
But singing and helping out at the day centre he attends means he hasn’t become isolated.
‘Singing is like a release,’ he says. ‘It keeps my mind fresh and I’ve met some real friends.’
He and Maureen, 61, have been married 34 years and the couple, from Paulsgrove, renewed their vows last year.
‘The first year was the hardest,’ says Maureen. ‘By then I had come to terms with him being different. ‘We try to keep positive. Mick goes to day service and I get spare time to do what I want.
‘It allows me to be me. You need to recharge your batteries.
‘There’s lots of things Mick can do. His brain is so active but he can’t put it into action.
‘He digresses so quickly but you’ve got to focus on the good things.’
WHAT’S GOING ON LOCALLY
Cowplain Memory Cafe, Borrow Centre, London Road, Cowplain – first Thursday of the month, 1pm-3pm Havant Memory Cafe, The Meeting Place, United Reformed Church, Elm Lane – fourth Tuesday of the month, 10am-12pm Fareham Support Group, United Reform Church, Osborn Road, Fareham – first Wednesday of the month, 1.15-3.15pm Cosham Support Group, Patey Day Centre, Sundridge Close, Cosham – second Wednesday of the month, 7-9pm The Saturday Club (for those with early-onset dementia) – first and third Saturday of the month (call the Portsmouth office for more details) Gorseway Friendship Club, 354 Seafront, Hayling Island – fourth Thursday of the month, 1.30-3.30pm Gosport Memory Cafe, Christ Church, Stoke Road – third Tuesday of the month, 11.30am-1.30pm Singing for the brain, Buckland Community Centre, Malins Road, Portsmouth – every Friday, 10.30am-midday Patey Day Centre, Sunridge Close, Cosham – day care provision, referrals required through adult services. For more information call the Portsmouth office on (023) 9289 2035, email firstname.lastname@example.org or log onto alzheimers.org.uk