Chai Brady discusses the challenges of memory loss
Our life experience can give hope and security, teaching many lessons and offering a chance to reflect and grow, but when memories become fuzzy and things are harder to recall either in the short or long term this can certainly be an intimidating and scary process.
Growing old can be difficult, and dementia and alzheimers are often something many people will have to contend with, but accepting and tackling it will definitely benefit the individual.
Whether you’re someone who thinks they may have the disease or perhaps you’re a family member who noticed some warning signs, it’s not always easy to raise the flag and get help.
Many disregard forgetfulness as a sign of old age, and decide to dismiss it, but preparing and keeping a watchful eye over yourself or a loved one may make all the difference.
For those who are already struggling with dementia or Alzheimer’s there are plenty of helpful initiatives that can combat the helplessness and isolation that may ensue once the disease progresses.
Sr Bernadette Sweeney, a Religious Sister of Charity and the former school principal of St Agnes’ Primary School in Crumlin, Co. Dublin, started the Memory Lane Choir in 2015 to help those suffering from memory loss.
Speaking to The Irish Catholic she says: “I was always committed to those that didn’t fit the system, those outside the system in schools and in communities and I felt that those least catered for today with all that’s going on were those with memory loss or maybe mother and baby groups, so that’s why I set up a choir for people with memory loss.
“I’m so aware that it’s the music memory that’s the last memory to go. They can recall the words to so many songs so it’s brilliant for them, brilliant for their carers and brilliant for their families.
Dementia is a term which describes a range of conditions which cause damage to the brain. This damage affects memory, thinking, language and a person’s ability to perform everyday tasks. Alzheimer’s disease is the most common cause of dementia.
The choir, which has 50 members, practice songs that may be new to the participants but also those they are more than familiar with.
Gerry Noonan has been director of the choir since its official launch at the start of October in 2015. He is an experienced performer and teaches singing at the Leinster School of Music as well as directing the Crumlin Community Choir.
“It’s very important that it isn’t a patronising effort, that it’s a situation where people are empowered with the very best. So, Gerry does exercises, he stretches their repertoire a bit and keeps them in their comfort zone at the same time,” says Sr Bernadette.
“One of the biggest pluses of the programme for me was when I looked at the faces of the families watching the Memory Lane Choir, the people with dementia singing their hearts out, they saw them in a very happy state whereas at home sometimes they’re worried about them, and they’re overconcerned. They can sit and they can enjoy, and it’s actually extremely moving to see them in their old selves. When they’re singing those songs, you would never think there was anything wrong with them, they just looked fully present.”
The choir has more benefits than allowing people to be part of something that encourages them to use their talents and remember songs they have cemented into memory, it also helps tackle loneliness according to Sr Bernadette.
“They’re meeting like with like, so they’re all sitting there, they’re all singing, they feel part of a community once again and then their carer is with them and they feel very secure. They know the place where they come week after week.
“The one thing about the choir is it’s very important in as much as possible to keep it regular, the same day, same time and they have a little cup of tea in the middle that helps them to socialise and chat.”
She says that family members are “absolutely delighted” with the initiative. “People will say to me: ‘Before my husband died, I wish I knew about this’, because they see the happiness of the people,” Sr Bernadette adds.
“It’s absolutely wonderful, they’re such beautiful people and that’s what people forget sometimes, when people have a little part of them suffering from dementia, there’s a whole person there that needs to be acknowledged for the person they are and always were.”
Awareness of the issue has increased, with many politicians and other speaking openly on Irish media about loved ones that have been affected by Alzheimer’s or dementia.
Despite this Dr Kevin McCarroll, both a contributor to this paper and a physician and geriatrician specialising in osteoporosis and dementia at St James’s Hospital, Co. Dublin, says there are still many cases of the disease that go undiagnosed for years.
He says: “We still see patients come into hospital and they have memory problems, and really they have undiagnosed Alzheimers, dementia, but it wasn’t causing a massive problem at home because they were being supported by their family…”
With cases like this the disease could slowly become more serious. Perhaps two or three years could go by, with relatives not always being surprised when they hear the diagnosis. According to Dr McCarroll an early diagnosis is “better for everyone in terms of planning”.
He says: “You can put people on medication which does work for about 30% of patients. You can support patients and give them strategies to try and help them remember things, writing things down, making contact with the Alzheimer’s Society, it’s also useful as well if people around the person are aware – maybe close family and friends so they can understand.
“What often happens is the person won’t tell close family and friends, and they don’t know what to think when they’re talking to them, and they realise they have a memory problem – so it’s difficult for other people as well as the patient themselves.”
Sometimes family members don’t realise what it means to have the condition, which can cause huge amounts of frustration. Those suffering may repeat themselves many times or become confused and upset quickly, but usually there’s a “halfway house”.
Dr McCarroll says: “There’s no point getting frustrated, it can be very difficult when someone repeats themselves all the time, it’s not their fault because they can’t retain any new information so it’s not about trying to correct people but trying to support them.”
For people who are trying to come to terms with a loved one who has dementia the Alzheimer Society of Ireland recommends these steps:
– Accepting your feelings. Don’t bottle them up. Let yourself be as sad when you want. Work through your anger and frustration. These can be healthy emotions. Know that it is common to feel conflicting emotions. It’s okay to feel love and anger at the same time.
– Prepare to experience feelings of loss more than once. As dementia progresses, it is common to go through feelings of grief and loss again. Accept and acknowledge your feelings. They are a normal part of the grieving process.
– Talk to someone you trust about your feelings.
– Relieve tension through crying, do some exercise or, perhaps by punching a cushion or a pillow.
– Seek information and support about dementia for you and the person with dementia as it can be a vital step. Family carer support groups, social clubs, day centres and home care can help you to build a support network for everyone. Find out what services and support are available to you locally: http://alzheimer.ie/support/services-in-my-county/
– Make sure you see your GP if you are feeling very low or anxious or if you are very tired and unable to sleep. It is important to try to prevent your normal feelings of sadness slipping into depression, which is much harder to deal with.
Those who have the condition may not be aware of it themselves, as Dr McCarroll says they may “forget they forget” certain things.
“And very occasionally some patients won’t want to know anything about it and they deny there’s a problem. But the extent of the problem they may not be aware of because they forget they forget and they don’t realise the significance of it and it can be quite problematic.
“Sometimes we’ve had situations where the husband and wife both have memory problems and neither seem to recognise the significance of it.”
Writing a will, telling friends and family and taking steps to help remember things are advised once a person is made known of their diagnosis. Unfortunately, there hasn’t been much significant breakthroughs regarding treatment for the disease in the last few decades but with supports and preparation it can be managed.