Interview: Dementia - Understanding Together
Ciara Kelly is an ambassador for the HSE’s Dementia: Understand Together show garden at this year’s Bloom festival by Bord Bia taking place in Dublin’s Phoenix Park from May 30-June 3. People with dementia and their families are being encouraged to visit the 1950s-themed garden, Memories are Made of This, created by award-winning designer, Robert Moore, which aims to create a positive and enjoyable experience for people with dementia by rekindling fond memories.
For anyone who isn’t aware of it, what is dementia?
I suppose, simply put, dementia is a deterioration in your cognitive function – so you forget things, often your short-term memory is affected. You find it difficult to recall words, names – what you did yesterday. Over time it can progress so it’s hard to orientate yourself in place or time. You don’t recognise people and thinking or understanding things becomes more difficult. A little bit of that comes with age anyway but dementia is a more pronounced version.
Why did you decide to become an ambassador for the HSE Dementia: Understand Together campaign’s ‘Memories are Made of This’ show garden?
I lost my mum in 2017 and she had had dementia before she died. I saw first-hand what it does to someone causing them to slip away little by little and I wanted to be involved to highlight what families and the person themselves goes through in – as I call it – the long goodbye.
Would you agree that dementia can be a very isolating illness for the sufferer and their family? Why?
Dementia is hard. The person suffering can become fearful. Their personality can change. They initially often try and hide their symptoms. That’s isolating for them. And for families seeing that happen, trying to care for their loved one is difficult – challenging, sad, and, yes, sometimes lonely and isolating.
Why are projects like the ‘Memories are Made of This’ garden at Bloom 2019 so important?
I think they make us talk about these things! And think about them! Our population is ageing – so many of us will be affected one way or another by dementia. It’s important to make people aware of it. But also, to normalise it. Parts of the person slips away but so much of them remains. We had wonderful times with my mum even when she had dementia. This garden celebrates those who are suffering and reflects in a really lovely way that memory loss may change things but there can still be joy for people.
How does reminiscing help dementia patients?
When you lose your short-term memory, you tend to live in the past. The present is confusing and hard to navigate for those with dementia. Reminiscing about a time they can remember properly and seems much clearer to them than their current environment makes them happy, wistful, and allows them to talk about things in a way that they simply can’t in the present.
Do you think there needs to be more awareness around dementia in Ireland?
Yes absolutely. It is a growing problem and it’s misunderstood. People are afraid of it. We need to destigmatise it and demystify it for people. My mum was still funny, feisty and engaging when she had dementia. She was still herself and great company in many ways – she just had dementia too. It is important to make people aware that even though someone is changed they’re still that person you love.
Do you think there needs to be more support offered to families living with this condition?
God yes! It’s very tough. Practical supports and advice need to be much easier for families to access – we still have a situation where finding services is hard and often you have to fight for help ... all of that needs to change.
What advice would you offer to anyone out there who has just been given a dementia diagnosis or someone whose loved one has just received a dementia diagnosis?
Inform yourselves. Find out about dementia and don’t be afraid. It’s a slow process. Stay connected, talk, laugh, do as much as you’re able. Take whatever help is available and enjoy the joyful moments where you find them. There will be many.
For tips on stimulating reminiscence in your garden, visit understandtogether.ie/bloom.