Emotional journey to a brighter future

There are currently more than 41,700 people living with dementia in Ireland.

Some 9% of these have contracted the early onset form of the disease. The number of those afflicted is expected to rise to 147,0000 by 2041.

At the moment, about 4,000 cases of dementia are diagnosed every year and this means that there is an increased need for specialised and sympathetic care. Some 50,000 family members are currently looking after someone with at least one symptom of dementia.

The Alzheimer Society of Ireland (AI) was founded in 1982 by a small group of concerned people caring for an affected family member who had Alzheimer’s or some other form of dementia.

Today, AI is a national voluntary organisation with an extensive network of branches, regional offices and services that aim to provide people with all forms of dementia, their families and carers with the necessary support to maximise their quality of life.

They want to see an Ireland where no one goes through dementia alone, where policies and services respond appropriately to the person with dementia and their carers whenever they need support.

Alzheimer’s is the most common form of dementia and was first described by German psychiatrist Alois Alzheimer in 1906. It is most common in the over-65s, but early-onset Alzheimer’s can occur much earlier, although thankfully it is much rarer.

The cause and progression of Alzheimer’s is still not understood. Research indicates that the disease is associated with plaques and tangles in the brain. Current treatments and medication can help with the symptoms but. unfortunately, cannot reverse the progress.

But that doesn’t mean to say that tremendous efforts are not being made in research for some answers to the existing condition.

Lifestyle choices are also being examined. A healthy heart is essential obviously, for overall health and research has shown that heart health may be associated with the disease in some instances. Mental stimulation, exercise and a balanced diet have all been suggested as ways to delay the cognitive symptoms once dementia has been diagnosed.

I spent a challenging and rewarding couple of years working with a group of people, several of whom had Alzheimer’s. We would meet once a week and. depending on the day that was in it, read poems, write stories of times gone by, act out short plays we’d written, talk extensively and eat quite a lot of chocolate biscuits.

During that time, and with the support of the HSE, we compiled a book and, flushed by our success, went on to write produce and act in a very successful Comedy Hour. And during that time I certainly learned the truth of Bob Demarco’s words.

Bob has written books on the topic of dementia and runs an on-line site, called the Alzheimer’s Reading Room.

I Remember Better When I Paint is a documentary film about the positive impact of art and other creative therapies on people with Alzheimer’s disease” Bob says. “It’s something that I have often seen for myself. And I’ve written many times about how it is my belief that persons living with Alzheimer’s are capable of more than is commonly believed.”

Sept 2012 marked the first global World Alzheimer’s Month, an international campaign to raise awareness and challenge stigma. Because the sad fact is, of course, that people who are living with this debilitating condition can also become social outcasts.

The theme for World Alzheimer’s Month was “Dementia — Living Together” and its goal was to create a society where people with dementia and their families can live without the fear of discrimination.

As someone once pointed out, Alzheimer’s is a disease that families suffer from. And in recognition of the sterling work done by carers, the Alzheimer’s Society of Ireland has recently launched two new initiatives. I caught up with Vanessa Bradbury, a busy case manager for AI, to find out what was involved.

* Vanessa, I have heard that the free five-week training course that’s starting soon in Bantry is already being very well received.

>>“Yes, it really is. It will be held at the Westlodge Hotel and it starts on Oct 4. The programme is designed to help family carers understand the condition and increase their confidence in their ability to care. It’s also very important that carers look after themselves, their own health and well-being.

Is the response an indication of the need there is in rural areas for more information and training?

>>“We realised there was a need for a programme like this as a result of Carer’s Week which took place at the West Cork Hotel in Skibbereen earlier this year. What people said they wanted was support, and how to access information.

What areas does the course cover?

>>“It takes a look at dementia, what it is, why it is and we talk about memory, judgement and emotions in people who have the condition. We take carers through the different stages of the disease, how it can affect relationships in the family and how best to support each other. The take up has been huge and we are in the process of starting a Reserve List.”

* I believe you have another initiative that you started recently, one that this paper supported?

>>“That’s right, We’ve started a volunteer scheme, people who will visit and provide social contact for people living with dementia, and enable family carers to take a break. They might play cards with a person, read books have a walk in the garden, do their hair, whatever the person they are visiting might want to do. The volunteers provide what is known as low-level care. They don’t perform any personal duties and the primary carer can either take a break for a couple of hours or stay with their family member if they would rather.”

* What a great idea. Has it been successful? And what sort of training is required?

>>“Since the advert ran in Feelgood some weeks ago, we’ve had a really positive response. Volunteers attend a two-day training course where we talk about our organisation’s ethos what dementia is and how to communicate most effectively with someone who might have language loss. We also point out that it’s easy to fall into the trap of thinking that everyone with Alzheimer’s is going to react in the same way, which of course, just isn’t true.

* So this scheme is up and running already?

>>Yes, and the list of ways our volunteers can help are endless. One volunteer told me that she’d discovered that the lady she was visiting used to love baking but was finding the measuring, what quantities to use increasingly difficult to manage. But with a little support from the volunteer she was able to make cakes and bake again, which made her really happy.

* What’s your own background Vanessa?

>>“I have a background in psychiatric nursing. I’m originally from the UK, the Midlands. I moved here last year because I wanted a life change and now I live in Dunmanway and I love it. I started this job in March and I count myself to be hugely fortunate. Fortunate and privileged to do the work I do.”