Swift diagnosis essential for effective dementia support

As with other areas of the health service, waiting times for a dementia diagnosis have spiralled since the start of the coronavirus pandemic. Ahead of the Alzheimer's Society's 'Memory Walk' at Stormont on Saturday, Mairead Holland hears how more needs to be done to help patients and their families as they come to terms with a progressive condition where swift intervention can make an important difference

Mairead Holland

Ken Thompson's wife Pat died last November, aged 75, having been diagnosed with vascular dementia five years previously. Waiting times to diagnosis the progressive condition have spiralled since the start of the coronavirus pandemic. Picture by Mark Marlow

WHEN Ken Thompson's late wife Pat was referred for dementia tests by her GP, it was the start of a long and difficult journey for the Belfast couple.

Not only were they told that Pat faced a lengthy wait for a diagnosis but they also encountered problems in the subsequent healthcare and support system.

Now, Ken (78) is trying to make that journey an easier one for other people by sharing his experiences and suggestions for change as part of the Alzheimer's Society's focus group.

He and Pat had been married for 55 years when she died last November, aged 75, having been diagnosed with vascular dementia five years previously.

The mother-of-two and grandmother-of-three had always loved driving but began to lose interest in it and, for Ken, this was one of the early warning signs that something was amiss.

In 2015, Pat was persuaded by her family to visit her GP, who carried out tests and said she would need to be referred to a specialist.

 Pat and Ken Thompson

"That's when the problems started," says Ken. "We got a letter telling us to ring for an appointment and when I did the hospital told me I'd hear from them in a year's time.

"When I said 'that's a long time', they explained it was a year just to be put on the list for an appointment and then there would be another wait to see someone."

Beside himself with worry that his wife might have to wait up to three years for a diagnosis, Ken complained to his GP who managed to get Pat an appointment with a psychiatrist at Knockbracken Healthcare Park - a mental health facility run by the Belfast Health and Social Care Trust - within eight weeks.

Ken's experience is not unique and, worryingly, waiting times for diagnosis appointments have increased during the coronavirus pandemic.

Recent figures provided in response to a question in the Assembly show that in February 2020 there were 546 people waiting more than nine weeks for an appointment.

By February 2021 this figure had more than tripled to 1,806, with the increase seen across all five Health and Social Care Trusts.

 Bernadine McCrory, Northern Ireland country director of the Alzheimer's Society

It's a situation that Bernadine McCrory, Northern Ireland country director of the Alzheimer's Society, describes as "catastrophic".

"Dementia is a progressive condition and a swift diagnosis will enable the person affected and their family to access extremely important services and information at the earliest possible time," she says.

"With this information, the person can make informed choices about how they wish to live their lives and have those choices recorded before their communication skills deplete.

"It is unacceptable to have people with dementia waiting months on end for a diagnosis.

"But many of the people we talk to tell us the diagnosis process is lengthy and difficult, and the healthcare system hard to navigate."

Ken feels strongly that more needs to be done to help people cope in the aftermath of a diagnosis, including having someone to talk to who really understands.

"When people with cancer go to see a consultant, nearly all of them come out and see a specialist nurse or someone who will go through things with them," he says.

"With dementia, you go in to see the consultant for 10 minutes, come out and you're handed leaflets.

"A social worker did come out to talk to Pat at home and said she didn't need their help at that stage, and I agreed.

"You think everything will be okay, that it won't be too bad but slowly you realise you can't cope. It can take six months, it can take two years to realise it.

"Then you have to start fighting the system to get help."

He adds: "One of of the suggestions we have come up with in the focus group, and that we're trying to get the NHS to take on board, is that carers like us could be in the consultants' area, as volunteers to talk to people, or they could give out our numbers for people to phone and talk to us.

"It would have made a massive difference to me. I wish someone at that point had sat down and said to me, 'You're on a journey. At the moment you think it's OK, but it's a hard journey and it's going to get worse because you're going to have to cope with somebody who is going to slowly lose their facilities, and slowly go downhill'."

Pat Thompson died last year, having been diagnosed with vascular dementia five years previously

Ken eventually did reach out for help, phoning the Alzheimer's Society, whose number he found on one of the leaflets.

He likens it to a "window opening" and said the support the charity provided was "tremendous".

An estimated 22,000 people in Northern Ireland have dementia, which occurs when the brain is damaged by diseases, such as Alzheimer's, or a series of strokes.

Symptoms include problems with day-to-day memory, concentration, language, difficulty judging distance and losing track of date and time.

Changes in mood are also common and the person may become frustrated, irritable, withdrawn, anxious, easily upset or unusually sad.

Ken remembers his wife, who worked in the housing department of a council in England and was a Special Constable - a volunteer police officer - as someone who enjoyed life and "always wanted to do something different".

The couple, who were originally from London, particularly enjoyed travelling and had lived in Spain for 12 years before moving to Northern Ireland in 2007.

"At first, Pat didn't accept she had dementia. It took a year-and-a-half to two years before she could do that. The thing that upset her most was being told she wasn't allowed to drive," he recalls.

"Then her mobility started to become a problem, and she didn't want to exercise.

"Exercise and being active is a great help with dementia. It helps to slow it down, and that's been proved many times.

"Her memory went backwards and forwards. She would have lapses in her memory but not as bad as some people, and she always knew us, right up until the end."

The year before her death, Pat was given a place at a day centre three days a week. She also got support from the Northern Ireland Hospice Hub and took part in 10 pin bowling through Lisburn and Castlereagh City Council.

However, she started to suffer from recurrent chest infections, grew unsteady on her feet and last June suffered a suspected stroke.

During her periods of ill-health, she had several stays in hospital and, at one point, received a package to allow her to be cared for at home.

Although her situation was exacerbated by demands on staff due to Covid and restrictions which meant visiting was curtailed, Ken believes the system was "broken" before the pandemic.

"Better dementia training for staff is one thing that is needed," he says.

"Some of them were great but others just didn't understand Pat's needs.

"I miss her tremendously. We went everywhere together."

 A ‘Memory Walk’, organised by the Alzheimer’s Society to raise awareness and support for people affected by dementia, will once again take place on Saturday at Stormont. Picture by Elaine Hill Photography

Meanwhile, the Alzheimer's Society is expecting hundreds of people to take part in its Memory Walk this Saturday, September 25, at Stormont Estate.

"The last year has been tough for everyone, but for the 22,000 people with dementia in Northern Ireland, the impact of coronavirus has been catastrophic and every step our fundraisers take will make a huge difference by providing a lifeline for people affected by dementia who have been worst hit," says Ms McCrory.

Supporters can also opt to walk on their own in a location of their choice throughout September.

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