Living with vascular dementia: Dianne's story
Tasks we take for granted, such as making tea, become a major challenge when you have vascular dementia. Dianne Campbell tells Senior Cardiac Nurse Christopher Allen about life with the condition.
“It started with small things,” says Dianne Campbell, 48. “I couldn’t remember doctor’s appointments or to collect my prescription from the pharmacy. I’d be cooking and next thing the kitchen would be filled with smoke because I’d forgotten about it. I’d take out the milk and wouldn’t put it back, then look in the fridge and it wasn’t there.”
Dianne’s moods became unpredictable too. “I was gradually becoming more aggressive and shouting at people all the time,” she says. “I’d just boil up and blare it all out. I shouted at my family members just because they were there.”
I’ve had to learn how to control it and try not to let myself get upset and frustrated
At first, she put her symptoms down to stress, age and fatigue. “My tiredness was through the roof and I couldn’t concentrate on anything at all,” she says.
“I was so frustrated with myself. Everything I did, I just couldn’t remember. In the end, it was going from bad to worse, so I made an appointment with my GP, who did a memory test and then referred me for an MRI of my brain.”
In 2012, Dianne received a diagnosis of vascular dementia from a specialist.
Do you have vascular dementia or are a carer for someone with the condition? You might be able to join a clinical trial of a new treatment that we’re funding with Alzheimer’s Society.
All organs need a good blood supply. When blood vessels supplying the heart become diseased, it leads to a heart attack. When blood vessels in the brain are affected, this can lead to a loss of brain function either in the form of a stroke, the symptoms of dementia or both.
Dementia is an umbrella term for a group of conditions that affect how well the brain can function normally. This can include issues with memory, language and understanding. The most common forms are Alzheimer’s disease and vascular dementia, or a combination of the two.
Although Dianne is unusually young, the symptoms she experienced are typical of vascular dementia, as Peter Passmore, Professor of Ageing and Geriatric Medicine at Queen’s University Belfast, explains. “While vascular dementia can lead to issues with memory, mostly people will experience a greater challenge in what are known as ‘executive functions’,” he says.
“These are tasks that involve planning what you’re going to do, how you’re going to do it, doing it properly and seeing the task through to the end. This could be anything as simple as making a cup of tea or dressing yourself properly and appropriately, through to more complex tasks like driving a car.”
Those who have vascular dementia resulting from a stroke may also experience personality changes. “This entirely depends on the area of the brain that’s been affected by the stroke, but in some cases it can lead to someone having little or no interest in anything at all,” explains Professor Passmore. “Some people may also have issues with central functions like bladder control or developing an abnormal gait when they’re walking.”
Vascular dementia explained
What is vascular dementia?
When blood vessels supplying the brain become diseased, this can lead to a loss of brain function in the form of a stroke, the symptoms of dementia or both. Most people affected by vascular dementia find ‘executive functions’ more challenging. These are tasks that involve planning what you’re going to do, how you’re going to do it, doing it properly and seeing the task through to the end.
Is there any way to prevent vascular dementia?
It’s widely accepted that risk factors for cardiovascular disease contribute to both vascular dementia and Alzheimer’s, but we need to do more research to understand the reasons behind this.
Everyone who has vascular dementia will have at least one risk factor for cardiovascular disease. Taking control of any risk factors for cardiovascular may help to reduce your risk of developing vascular dementia, but we don’t know for certain.
What support is available?
There is no reason why people with vascular dementia shouldn’t receive the same support as those with any other dementia diagnosis. Some people will need assistance or adaptations at home as their condition progresses, such as walk-in showers or grab rails. You are entitled to an assessment to see if this is suitable.
Later, you may need carers one or more times a day. Assessments are usually carried out by social services, physiotherapists and occupational therapists. You may also consider whether attending a day centre or respite care would benefit you or those caring for you. Ask your GP or local social services department about how to access these services.
Living with dementia
While there are various treatments and medications licensed for use in people with Alzheimer’s disease, Professor Passmore says treatments for vascular dementia are currently under review.
Many medications that may be of benefit aren’t specifically licensed for the condition. For Dianne, getting a diagnosis and time with an occupational therapist helped.
“Finally I knew the reason why I was being so forgetful and becoming agitated with people,” she says. “My occupational therapist, Sarah, told me this was all part of the condition, but that with some support I’d be able to learn how to cope better. She was so supportive of me and helped me to get to know my brain again.”
Dianne has adapted by recognising that she can’t do lots of things at once. “I now do one thing at a time, finish it and then start the next task,” she explains.
“I’ve had to learn how to control it and try not to let myself get upset and frustrated, because that makes it worse. I have to try to relax and it will usually come back to me.
“Sometimes that’s hard, because I know there’s something I’ve forgotten and I can’t put my finger on it. That can really bug me. I’ll be cooking and forget what I’m making, or even how to make it. I even sometimes forget that I haven’t eaten.”
While Dianne’s had support from her occupational therapist, she is keen to help others living with dementia and spends much of her time providing peer support at the Kensington, Chelsea and Westminster Memory Service.
“It really keeps me motivated and I find it very therapeutic,” she says. “Most of the people there have Alzheimer’s. They’re the most humorous, witty and funny people! They’re comfortable around me too, because they know I have dementia as well.
“A lot of them feel they can ask me questions they’re too ashamed or embarrassed to ask healthcare professionals. I’m more comfortable around them too, because when I make a mistake around other people, I think: ‘Will I be judged?’ With people who have dementia, they just laugh, because they understand.”
Recently, Dianne gave a talk to the Alzheimer’s Society in Brent, where she lives. “The chairs were packed out and I think people enjoyed it; they asked loads of questions,” she said.
“It was mostly people with dementia and their carers; I think they loved it, because I could actually answer their questions because I’m going through it too. It puts them at ease. I’m not much of a speaker. I prefer it when people interview me and ask lots of questions, then you can’t stop me!”
Creating a better future
Dianne also sits on the board for the Brent Dementia Strategy Group. She wants to make Brent a ‘dementia-friendly borough’ by talking about her condition.
I’ve learned to love my vascular dementia
Talking has also helped Dianne come to terms with her diagnosis. “It’s good for me to talk about my vascular dementia,” she says.
“I wouldn’t have it any other way. When I finally started talking about it, I accepted it wasn’t going anywhere. When I talk about it, I’m not hugging it and wrapping myself around it, I’m setting it free. I’ve learned to love my vascular dementia, and when you love something, you should set it free.
“Society needs to understand it. We can’t look at people like they’re losing their marbles anymore.”
Funding research into vascular dementia
We’re co-funding a groundbreaking clinical trial of a common blood pressure medicine that, if the trial is successful, could become the first treatment for vascular dementia. The four-year trial, which began in January 2014, will cost £2.25m. We’re funding half of that cost alongside the Alzheimer’s Society.
High blood pressure is a major risk factor for vascular dementia. Researchers think the drug amlodipine, which treats high blood pressure, may alleviate vascular dementia symptoms.
Researchers, led by Professor Peter Passmore, hope to show that 10mg of amlodipine a day can significantly improve memory and cognitive health. There are currently no available treatments for vascular dementia.
It affects about 150,000 people in the UK, and people with coronary heart disease or related risk factors are especially at risk. It can also be triggered by a stroke.
CV Professor Peter Passmore
- Professor of Ageing and Geriatric Care at Queen’s University Belfast
- Research interests include neurodegeneration, dementia, pharmacology and therapeutics in older people, and cardiovascular disease in older people
- Member of Portfolio Development Group at NIHR Clinical Research Network (Dementias and Neurodegeneration)
- Leads memory and cardiovascular disease clinics for older people in Belfast
Find free support
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