Is there a silver lining to having vascular dementia AND Alzheimer's?

After almost 40 years in nursing, much of it spent in cardiology, using a defibrillator machine was second nature to Fran Murt.

But suddenly, on a training day, the deputy matron who had joined the NHS at 17 found herself struggling to use it.

‘I just couldn’t remember how it worked and burst into tears,’ recalls Fran, now 70. ‘My colleagues tried to reassure me I was just stressed after a busy time at work, but I knew something more was wrong.’

The defibrillator incident was just one of a string of puzzling symptoms Fran had experienced over the previous year or so, including out-of-character lapses in her planning skills.

‘I had always been really organised at work and at home, running our family finances and the household like clockwork – but, suddenly, I couldn’t keep on top of the bills,’ says Fran, a grandmother of three, who lives in Liverpool with husband Frank, 71, an NHS data officer.

‘One day I caught my usual train to my mother-in-law’s house about three miles from home, and instead found myself in Ormskirk, 11 miles away,’ she recalls. ‘I didn’t know how I got there, why I was there or how to get home. I had to phone Frank to get me.’

There were other confusing episodes. Once she got off at the wrong bus stop on a familiar route, and another time she got lost in Liverpool city centre, an area she’d known all her life.

‘I couldn’t fathom what was happening to me,’ says Fran.

‘Frank also noticed I was forgetting the names of everyday items, like the kettle, calling it a “thing”.’

Fran’s GP initially suspected she’d had a mini-stroke, caused by a temporary blockage in a blood vessel supplying the brain. But scans were negative and she was told there was nothing wrong, so returned to work.

However, a few months later Fran found herself unable to put a blood pressure cuff on a patient – a routine nursing task.

‘I didn’t know which way it went,’ she says. Fran made an excuse, asking a colleague to do it, but then took sick leave, terrified she might make a mistake.

She returned to her GP, who gave her memory tests involving simple questions such as her age and naming the Prime Minister, which she struggled with.

Then, at a hospital memory clinic, CT and MRI scans revealed brain changes caused by blockages in smaller blood vessels – a classic sign of vascular dementia, the second most common type of dementia after Alzheimer’s, and affecting around 180,000 Britons.

Fran knew she was at higher risk of heart disease – her mother had died of a heart attack aged 52 – and she had been treated for high blood pressure and raised cholesterol since her 40s, but the potential link to her brain was devastating, she recalls.

Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.
Symptom Checklist

Given her relatively young age – 63 – doctors asked her to return a few months later for more tests before delivering a diagnosis.

In 2020, she scored low on memory tests and was given a lumbar puncture, where a needle is inserted into the spine to extract cerebrospinal fluid to check her levels of beta-amyloid and tau proteins – changes to these biomarkers are hallmarks of Alzheimer’s.

A lumbar puncture is used to confirm dementia alongside CT or MRI scans and cognitive tests.

Fran was diagnosed not just with vascular dementia but also with Alzheimer’s disease.

She was deeply upset, she recalls, fearing she might not be able to recognise her family or care for her grandchildren any more.

‘I also knew I’d never go back to work, so it was like my identity was going, too,’ she says. ‘My life was turned upside down.’

The family shared her shock: ‘There were lots of tears. But I said to them that I wasn’t going to let dementia define me and was going to get up every day and make the most of whatever time I had left.’

An estimated one in five people diagnosed with dementia has mixed dementia – a combination of more than one different type of the disease.

The combination of Alzheimer’s with vascular dementia is the most common. Other common types of dementia include dementia with Lewy bodies (where abnormal protein clumps form inside brain cells) and frontotemporal dementia (FTD), a type that affects the frontal temporal lobes of the brain involved in behaviour and language.

Tim Beanland, head of knowledge at Alzheimer’s Society, says having more than one type of dementia may make symptoms worse. ‘If you have mixed dementia then you have more than one disease contributing to your cognitive decline,’ he explains.

However, the rate the disease progresses can vary greatly.

‘This will depend more on the extent of each disease in the brain, rather than how many diseases you have contributing to your symptoms,’ he adds.

Identifying mixed dementia is essential to ensure treatment addresses both the underlying causes and symptoms.

Specific diagnosis could also mean patients benefit from any relevant new drugs that may become available, explains Professor Chris Fox, an expert in mental health and dementia research at the University of Exeter.

In Fran’s case it meant she could be prescribed memantine, a drug that helps with Alzheimer’s symptoms, including forgetfulness, confusion and anxiety. It works by blocking a protein in the brain called glutamate which can damage nerve cells.

There are currently no specific drugs for vascular dementia – treatment relies on controlling blood pressure and cholesterol through medication and lifestyle changes.

Drugs such as rivastigmine, donepezil and galantamine may reduce confusion and improve attention in Lewy body dementia, by increasing levels of a chemical, acetylcholine, which improves the ability of brain cells to signal to each other.

While there is no specific treatment for FTD, antidepressants can help the compulsive behaviours some people experience.

Post-mortem studies of brain tissue reveal that 50 per cent of people diagnosed with only one type of dementia in fact had mixed protein clumps, including amyloid and tau, in their brains (associated with Alzheimer’s) – as well as alpha synuclein (associated with dementia with Lewy bodies) and TDP-43, linked to Parkinson’s disease.

Indeed, even with just Alzheimer’s disease, the picture may be more complicated.

Louise Robinson, a GP and a professor of primary care and ageing at Newcastle University, explains: ‘This is a complex area, but from research in the past decade we know that even if you have pure Alzheimer’s, vascular factors play an important part, too.’

Diagnosing mixed dementia accurately is difficult because it mostly relies on observing the combination of the person’s symptoms, which depend on which part of the brain is affected.

It’s hoped that further research into biomarkers could identify more cases of mixed dementia.

In a three-year study being funded by Alzheimer’s Society at Imperial College London, researchers will analyse post-mortem brain samples from patients diagnosed with Alzheimer’s to determine exactly which types of clumps damage the brain – as well as identifying biomarkers that might relate to mixed protein clumps. This could eventually lead to a simple blood test.

Four years on, despite her initial shock, Fran says she sees the positives of being diagnosed with the double whammy of dementia diseases.

She says: ‘I call it my buy-one-get-one-free, and at least being diagnosed with Alzheimer’s as well meant I was eligible for memantine. I believe this has stabilised some of my symptoms. I wouldn’t have got that had I not been diagnosed with mixed dementia, as it’s not a treatment for vascular dementia.’

Although she’s had to give up nursing, Fran still manages to catch the bus alone to meet friends, albeit with a tracker on her phone and watch so her family knows where she is.

She also gives talks to student nurses about being diagnosed with dementia and takes part in a podcast, Fighting Dementia, ‘to show you can still lead a good life’.

A lifelong Liverpool FC fan, Fran says she can’t cope with the crowds at Anfield for the men’s team any more, but still enjoys watching the women’s team, which draws smaller numbers.

A stroke in 2022 left her weak on her left side and she also has type 2 diabetes and atrial fibrillation, a heart rhythm disorder.

Fran says: ‘I’d be lying if I said I don’t worry about what’s ahead of me, but then none of us knows. You just have to focus on what you can still do and get on with it.’

Worried you or a loved one may have dementia? Alzheimer’s Society has a symptoms checklist, visit: alzheimers.org.uk/symptoms