Laila Kjellström raised over £2,500 in her 81st birthday fundraising challenge, in support of vascular dementia research
Meet the octogenarian rambler hill climbing for dementia research.
Vascular dementia affects an estimated 150,000 people in the UK, but we still don’t know much about how to prevent it or treat it. We talked to fundraiser and Edinburgh Medical School volunteer Laila Kjellström, 81, about why she wanted to support dementia research and spoke to the University of Edinburgh researchers to find out more about what they’re doing to better understand this debilitating condition.
Retired psychotherapist and former University of Edinburgh tutor Laila Kjellström had grand plans to host a party for her 80th party last year. But then Covid-19 happened, and any thoughts of large gatherings had to be abandoned. Her regular trips to Peebles or Pitlochry for walks were also curtailed and she soon tired of walking multiple loops around the Meadows.
Like many of us experiencing lockdown restrictions, boredom crept in, but then she received some difficult news. Her partner was diagnosed with vascular dementia and he was one of an increasing number of Laila’s circle of friends to develop symptoms of the condition. Laila felt compelled to do something.
So this year she didn’t let her 81st birthday go by unmarked. But instead of a party, she chose to do something for others, deciding to climb Ben Vrackie, the 787m ‘Speckled Mountain’ that towers over the Scottish town of Pitlochry, to raise money for dementia research at the University of Edinburgh. Her ascent was slow and steady and the last stretch was steep and tough, but she made it, motivated by all the people who were supporting her.
“I wanted to do something positive. I’d been reading about vascular dementia and that it is unknown how it’s going to affect people: some people degenerate very quickly and others are in a stable mental condition for a while,” she says.
“It would be really helpful if it is discovered what people can do to prevent developing vascular dementia. Maybe there are simple things like exercise and diet, as well as being socially active, for example volunteering or learning a language? Once people are diagnosed, what can they do to make life as ok as they can? What can family and friends do to support, because a dementia diagnosis affects the family as well?”
These are just some of the questions that University of Edinburgh researchers hope to find answers to. Vascular dementia is the second most common type of dementia in the UK, affecting an estimated 150,000 people and their families and friends. It usually starts when the small vessels within the brain become damaged and reduce blood flow to the brain. Currently, there is no definite prevention or cure.
Professor Joanna Wardlaw, Chair of Applied Neuroimaging at the University of Edinburgh, researches small vessel disease, stroke and ageing. She says: “From a research side, it is important to learn more about vascular dementia to find new treatments and a cure. Compared to other dementias, such as Alzheimer’s disease, people seem to be less aware of the symptoms that are due to vascular dementia. If more people and doctors learn about vascular dementia, this will help diagnosis, prevention of worsening, and help people who are living with vascular dementia to receive better support.”
Professor Wardlaw’s team in the University’s Centre for Clinical Brain Sciences focuses on cerebral small vessel disease, a common disorder of the small blood vessels in the brain that causes cognitive problems, 25% of all strokes, and is the most common cause of vascular dementia and mixed dementia with Alzheimer’s disease.
“We use Magnetic Resonance Imaging (MRI) scans, similar to the types of brain scans that are commonly used in hospital clinics, to examine how small vessel disease affects the brain and we look for changes that could act as markers for vascular dementia. We also perform thinking and memory tests to detect cognitive problems that are related to small vessel disease and vascular dementia. This tells us about how blood vessel diseases damage the brain and helps us to develop new treatments,” explains Professor Wardlaw.
Proceeds from Laila’s fundraising climb will support PhD research carried out by Angela Jochems, who works in Professor Wardlaw’s team. Angela, who has a Bachelor’s degree in psychology and a Master’s degree in Neuropsychology, moved to the UK from the Netherlands recently, starting her PhD in March 2020.
Angela is using brain scans to look at white matter lesions, which show up on the scans as abnormalities, and understand more about how these lesions might change in people who have small vessel disease or vascular dementia.
“We know that these lesions are caused by small diseased blood vessels and we know that these damage white matter in the brain, and that white matter is very important for connecting all different brain regions, ensuring the efficient information processing expected in normal cognition,” she says.
“What I want to do is use brain scans to look at the connections, or the wiring of the white matter, to see how the quality of the blood vessels and these damaged areas affect the quality of the white matter. I want to find out why sometimes, the white matter lesions can change, grow or shrink, and how that can affect cognition and lead to dementia.”
Angela, who has had experience of working directly with dementia patients on clinical placement in Amsterdam and working briefly as a psychologist in nursing homes in the Netherlands, is motivated to learn more about a condition that affects so many people, yet is still misunderstood.
“When I was working in nursing homes in the Netherlands, I remember someone who had clear symptoms of vascular dementia to me, but he didn’t really have memory problems. With Alzheimer’s disease that’s usually one of the first things that people notice, but it’s not the case with vascular dementia because it depends where the damage is. His family didn’t understand why he was in a care home refusing to believe he has dementia because ‘he still remembers everything’, which caused great distress for his wife, when the reality was he couldn’t live at home any more.
“People don’t feel understood. And I think the more knowledge we have to share with people who have small vessel disease or vascular dementia - to be able to explain why they have the symptoms they have, the more we can help them feel understood and supported,” she says.
Angela’s PhD research, and the broader team’s research into small blood vessels, can also play a role in better understanding how to prevent symptoms of vascular dementia emerging or worsening.
“We hope to use the knowledge of how small vessel disease can affect the brain and lead to dementia, to develop more effective treatments. This way it might be possible to slow down the disease and prevent future damage and dementia,” explains Professor Wardlaw.
“A greater understanding will help doctors to decide on the best care for their patients in future. We have already used some of this knowledge to run a trial of tablets that we think help the blood vessels – the MRI scans showed some signs that the tablets were helping, so we went on to do a larger trial, which should be finished later this year and give its results next year.”
This news might provide some comfort to Laila, whose 81st birthday hill climb has raised more than £1,300 for the research to date. For Laila, it’s been difficult to watch people she cares about change as a result of dementia, and for many more patients and their carers, more support, understanding and the possibility of treatment, can’t come soon enough.