‘My diagnosis was not the end of the world’

A dementia diagnosis does not have to be “the end of the world”, one man who has been living with the disease for a number of years has said.

Mick Turner, from Articlave in County Londonderry, received his diagnosis four years ago after his wife Christine noticed problems with his memory.

While some days can be “very frustrating”, Mr Turner said he was keen to not have his diagnosis consume him and aims to still have “an interesting and meaningful life”.

He was speaking as Queen’s University Belfast hosted a dementia-focused conference designed for patients, families and researchers to learn more about the condition.

The programme of the Dementia: Caring for Today, Planning for Tomorrow conference aims to provide an opportunity to “share worries and life’s problems with other people” living with the condition.

Speaking to BBC News NI before attending the conference, Mr Turner said his dementia diagnosis was “something like a challenge”.

“I feel that I will get totally useless at doing anything other than breathing, so I want to do things while I can remember,” he said.

Mr Turner tries to keep himself right by having a checklist of activities every day.

“Some days are very frustrating because I know that I am supposed to be doing something,” he said.

“I’ve got a list of things that I should be doing, I don’t always fill in the list.

“I’ll think something’s easy and then I’ll sit down and I’ll think what am I doing? How do I do this? And that gets a bit scary.”

Despite the challenges, he tries to get through the day by “doing something that is meaningful not just for myself but for others as well”.

Christine is his primary carer.

She said the diagnosis had changed their lives.

“Getting older you have lots of things you would like to do still and then out of the blue this happens and you don’t know what lies down the road,” she said.

“It’s very scary.”

The couple have been trying to keep active both mentally, physically and socially to help manage the symptoms, often taking part in meditation or heading out with friends.

“In the beginning, Mick found it difficult going to the different organisations he belongs to,” Mrs Turner explained.

“He said it was quite difficult to have a discussion with people and express his opinion, it would be in his head and he opens his mouth and the words may not come out.”

They are still able to attend their organisation meet ups, both together and separately.

“We go to the theatre, we go to music events, we’re part of a storytelling group called the Causeway Yarn Spinners, so we’re actually quite busy.”

Mrs Turner said acknowledging that life was changing but adapting their everyday routines had helped them.

“Generally, people don’t know how to deal with you – if people show interest we’ll talk to them about it.”

The couple attended the first dementia conference at Queen’s three years ago, where they heard more about the different kinds of research and care methods.

“There are people within the NHS, doctors, nurses and in the universities…who are doing great research and have great ideas, the money is missing, and we have thought if more people speak out then maybe more notice will be taken and we hope for the best.”

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning.

Memory loss is one of the most common symptoms, particularly the struggle to remember recent events.

Others can include changes to behaviour, mood and personality, becoming lost in familiar places or being unable to find the right word in a conversation.

It can reach the point where people don’t know when they need to eat or drink.

More than 25,000 people are living with dementia in Northern Ireland, according to the Alzheimer’s Society, but that number is expected to almost triple to 60,000 by 2051.