Trials and co-operation

Community fundraisers are supporting scientists who are working to develop a new treatment that could slow down the progression of Alzheimer’s.

There are currently no drugs available that prevent or cure Alzheimer’s. But researchers at Lancaster University are looking at two substances that accumulate in the brains of people with the condition and hope their work could eventually result in an effective therapy for the early stages of the disease.

As people develop dementia, microscopic proteins known as tau tangles build up inside nerve cells, while beta amyloid plaques accumulate outside nerve cells. These accumulate years – maybe even decades – before any symptoms appear, and people with severe Alzheimer’s have lots of both.

Professor David Allsop, who leads the team, has studied senile plaques for 40 years and was the first scientist to investigate their link with Alzheimer’s. He has developed a drug that blocks their formation and now hopes to create a similar inhibitor for tau tangles. Two drugs could form a combined therapy, targeting both substances at once, in the hope of slowing down progression of the disease.

Allsop says: “Many people who are mildly forgetful may go on to develop the disease because senile plaques start forming years before any symptoms manifest themselves. The aim would be to give the drug at that stage, to stop any more damage to the brain.

“Other research teams have worked on the plaques but our approach is a bit different. Some have tried to stop the formation of beta amyloid by blocking the enzymes involved in creating it, and others have triggered an immune response or used an antibody to the beta amyloid substance. Unfortunately those approaches have run into all sorts of problems with side-effects for patients involved in clinical trials.”

Before testing therapies on humans, scientists have to carry out extensive lab tests to make sure they are safe. To carry out a clinical trial normally requires support from a drug company due to the high costs involved.

The Lancaster work hit a stumbling block five years ago when the team faced a funding gap for its work. This led honorary researcher Dr Penny Foulds – who had completed her PhD under Allsop – to appeal to local people for help through the Defying Dementia campaign. Since its launch in 2015, the initiative has raised more than £380,000 though charity events and its Lancaster community shop – every penny of which has gone to the lab. The money has paid for a research associate and a PhD student.

A former science teacher, Foulds went into research after two of her grandparents developed Alzheimer’s. While the initial research had largely been funded by dementia charities, more needed to be done before the team could approach pharmaceutical companies.

“We couldn’t get the interest from anyone to progress it so it could get to the level of technological readiness that we needed,” she said. “There’s a term for this – the valley of death, where researchers get stuck because they can’t breach this gap.”

Foulds also works at MAC Clinical Research, raising awareness of the opportunities for people living with neurodegenerative conditions in getting involved in studies. MAC, in Blackpool, is where Allsop’s human trials will be carried out.

Defying Dementia has expanded to include lectures and regular events for people affected by the condition and other neurodegenerative diseases. These hubs meet once a month to offer support and bring together different services that work with patients and their carers, as well as offering practical information about technology such as falls detectors. The Bay Information Hub covers Lancaster and Morecambe, and there is also a Fylde Coast hub. Both were founded and organised by Foulds in a voluntary capacity, without any funding and relying on unpaid helpers.

She also helped set up hubs in Kendal and Hyndburn. There is also Freshers, a social group for younger people living with a diagnosis, who may not feel comfortable at regular sessions.

She says: “I think there’s a historical issue with dementia. People used to be described as going senile and it was seen as a normal part of ageing, but there’s nothing normal about this. There is a pathological basis that leads to the disease progressing.”

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Light in the darkness

When Terry Jones was diagnosed with early-onset Alzheimer’s at 56, he was sent home with a handful of leaflets about making a will and setting up power of attorney.

“I asked: ‘Is that it?’ They spend six to eight months doing the tests and then you’re on your own. There’s no information or support,” he says. “I had to find out what it all meant myself.”

Jones, from Darwen, had begun having memory problems a few years earlier. A long-distance lorry driver, he struggled when colleagues asked which routes he had been on but managed to cover it up for a while. When the diagnosis came four years ago, his wife was distraught but Jones’s initial reaction was relief that he had an answer. When that feeling subsided he slipped into a depression lasting months, before eventually realising he had to start moving forward.

He tried attending a dementia café but found everyone was decades older. “Everyone was in their eighties, and the lady spoke to me as if I was deaf. They were playing music like Vera Lynn on a radiogram. I knew it wasn’t the place for me.”

When Jones heard a radio report about clinical trials for Alzheimer’s at MAC Clinical Research, he decided to get in touch.

He says: “I told them that I was scared of needles and claustrophobic so I don’t like the MRI scans, but I’d take part as long as they would tell me the results so I know what is happening in my brain. The first scan found the disease hadn’t progressed, and the second and third scans showed the same. So now I’m taking part in as many as I can. It feels good to know where things stand because you’re just left in the dark once you get a diagnosis.”