Making the days count: After a dementia diagnosis, a Shrewsbury couple share their story

The saying has special meaning for the couple, who are adapting to life in the wake of Clive's dementia diagnosis six years ago.

When they aren't spending quality time together, they both play an active role in promoting awareness of the condition across Shropshire.

Clive, a former Flight Lieutenant at RAF Shawbury, was diagnosed with Alzheimer's disease, frontotemporal dementia and vascular dementia in June 2017.

He went to see his GP after struggling with his memory, which was out of character, and said he had a gut feeling that something was wrong.

"I knew something wasn't right. I used to pick Barbara's dad up and bring him back to our house for tea and one day I went to do this and I found myself in Morrisons car park.

"I called Barbara to ask what I was picking up from Morrisons and she said: you're not picking up anything from Morrisons, you're picking my dad up," recalls Clive.

He underwent memory tests, which confirmed there might be a problem, but a scan of his brain revealed nothing untoward. "They said something's wrong but we might never know what it is, which wasn't much help."

But 12 months later he was referred for another scan which confirmed evidence of the condition.

"When I got a diagnosis, it was almost a relief because I had something I could hang this problem on. There was very little I could do about it, but at least I knew what it was," says Clive.

At the time, the couple said there wasn't as much support available for people living with dementia and their loved ones as there is now.

"When I was diagnosed, we got half a rainforest of paperwork and if two pages of it it were of any use, that was it," says Clive.

"The only good thing that came out of it was a leaflet for the Dementia Engagement and Empowerment Project, which was the first group I was part of.

"There were very little else that we could find at the time. For the likes of Barbara as a carer, there was nothing out there."

Over time, the couple were able to access more support thanks to the Alzheimer's Society and other local groups.

They are currently supported by David Latcham, who is one of Alzheimer's Society's nine dementia link workers covering all parts of Shropshire and Telford.

"Dementia Link Workers support those with a dementia diagnosis directly to stay active and involved with the things that are most important to them," says David.

"This might involve supporting access to groups, peer support opportunities, or other services in their community.

"We work as part of a local network of dementia support services including DASS (Dementia Assessment and Support Service), Admiral Nurses, as well as other health and social care professionals."

Alzheimer’s Society also runs regular Singing for the Brain groups in Shrewsbury and Market Drayton, which Clive has attended.

The charity also runs the Shrewsbury Carers Peer Support group, which Barbara, who is a member, believes is a lifeline to carers.

"We support each other because being a carer does take a lot of you and it helps to talk to other people who are going through it all too."

The couple say they are constantly making adjustments to daily life as Clive's condition progresses.

As well as his memory, dementia has affected his vision and balance, and he relies on a walking stick and Barbara's arm in open spaces.

"There are so many facets of life that change when somebody is diagnosed with dementia. It's been a huge learning curve," says Barbara.

"When we first met 18 years ago, Clive was the one getting up early and I was the one staying in bed, now it's the other way around. We have to adapt and change and do what works for us," she adds.

Fighting the stigma that can still surround the disease is also important to the couple, who have been married for 16 years.

"There is still stigma out there. I'm not ashamed. I often make a joke of it and say to people: I probably won't remember your name, I've got dementia.

"But the one thing that winds me up is when people say 'you don't look like you've got dementia'. What does somebody with dementia look like?" says Clive, who was a bee inspector for Shropshire.

Clive uses his experiences to benefit others in a similar position through peer support and by getting involved in focus groups and studies.

"I speak to people who have been diagnosed and want to talk to somebody with dementia. I spoke to one man who didn't want to tell anybody but I said the best thing you can do is talk to people, tell your family and friends.

"If they are true friends, they will stick with you. After he told them, he said it was a huge weight off his shoulders," he explains.

Both Clive and Barbara are also keen to raise awareness of the importance of getting a timely diagnosis which unlocks the door to treatments, support and advice.

"Both of my parents and Clive's mum had dementia but none of them had a diagnosis. We knew something was wrong but we thought they're getting older - but it's dementia on their death certificates.

"The most important thing is to get an early diagnosis because a diagnosis gets you the support you need," says Barbara.

David says there is often confusion between the symptoms of dementia and the normal signs of ageing.

"You can't say that people with dementia are like this or people with dementia are like that. We always ask: what's weird for you? What's weird for one person may not be weird for someone else. If someone is usually on top of their birthday card list, but then starts sending out their cards for June in January, then that's weird for them," he explains.

*Anyone can call Alzheimer’s Society's support line to access answers to questions and local help by calling 0333 150 3456, or by emailing the local team on shropshire@alzheimers.org.uk.

Each person experiences dementia in their own individual way, but there are some common early signs and symptoms. These include:

*Memory loss - for example, problems recalling things that happened recently

*Difficulty concentrating, planning or organising – for example, struggling to make decisions or follow a series of steps such as cooking a meal

*Problems with language and communication – for example, difficulties following a conversation or finding the right word for something

*Misunderstanding what is being seen – for example, problems judging distances such as on stairs or perceiving the edges of objects, and misinterpreting patterns or reflections

*Being confused about time or place – for example, losing track of the time or date, or becoming confused about where they are

*Mood changes or difficulty controlling emotions – for example, becoming unusually anxious, irritable, sad or frightened, losing interest in things and personality changes