'We won't let dementia define us': Horsham couple speak out

‘We refuse to let dementia define us’ – that’s the message from a Horsham couple after receiving a devastating diagnosis.
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Penny and Paul Hoskins have spoken out about their experience of dementia and how local groups have helped them.

Paul was 56 when he was diagnosed with frontotemporal dementia. “My wife Penny had realised that there was something wrong,” he said. “It was a shock to the system when I got diagnosed. I since have come to terms with the reality that the plans I made, and the future I thought I would have, may have to change.

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“Having dementia has come with a unique set of challenges. For instance, everyday tasks like getting dressed has become difficult. I sometimes need prompting so that I know what clothes to wear and if I’m not reminded to change, I will wear my clothes for three days straight.”

Penny and Paul HoskinsPenny and Paul Hoskins
Penny and Paul Hoskins

Paul’s condition has since progressed and he’s also been diagnosed with Alzheimer’s but the couple have found support from Alzheimer’s Society social groups, and have spoken to pupils in schools about what life is like living with dementia for a younger person.

Paul’s wife Penny said: “we refuse to let dementia define us. One positive was that on the same day Paul was diagnosed, we went straight to the local Alzheimer’s Society office near us in Horsham. The people there were really, really helpful.”

Paul also attends an Alzheimer’s Society indoor bowls session and a group called the Horsham Rusty Brains. Paul said: “We have amazing speakers visit Rusty Brains to make us aware of what’s available for me and the other members. It gets me out, we talk to lots of people which is good.”

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Penny said: “When Paul has been to the group, he is chatty that evening, it engages him in conversation. If he’s been stuck in all day, he is more restricted. From my point of view, it is a great group and there’s a lot of banter between people with dementia.”

Paul and Penny say they also have wonderful support from Horsham Cricket Club where Paul volunteers.

Alzheimer’s Society West Sussex spokesman Tim Wilkins said: “We want everyone affected by dementia to know that whoever you are, whatever you are going through, you can turn to Alzheimer’s Society for practical advice, emotional support and guidance for the best next step.

“We are here to provide help and hope to everyone affected by dementia. We want to help people make the most of life with the condition, supporting them through some of the hardest and most frightening times.”

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The charity is also calling on the Government to make dementia a priority and to do more to make sure people receive a timely and accurate dementia diagnosis.

Tim said: “A timely diagnosis is crucial in enabling people to get treatment and support that can help them manage dementia symptoms and avoid ending up in crisis.

“We understand that getting a diagnosis can be daunting, but we believe it’s better to know – and nine out of 10 people with dementia told us they benefited from receiving a diagnosis.”

For more information and advice, call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456 or visit alzheimers.org.uk