Getting lost may be the first sign of Alzheimer’s, scientists discover

Losing your navigational skills or getting lost even though you are in a familiar setting may provide some of the first indications that Alzheimer’s disease could affect you in later life. This is a preliminary discovery of a remarkable long-term study being carried out by scientists who are searching to uncover how dementia first affects the brain.

The Prevent project – based at Edinburgh University, though it involves several other UK research centres – is intended to detect signs of Alzheimer’s in people while they are still relatively young. Usually, the disease does not show its symptoms until individuals are in their 60s, by which time it has already done profound damage to the brain.

“Alzheimer’s is considered to be a disease of memory but we now think from our early work that the difficulty people are really having – at least to begin with – is not to do with declining memories but to do with their declining ability to visualise the location of objects or themselves,” said Karen Ritchie, one of the researchers. “They are losing their ability to navigate.”

A classic example is the character of Alice Howland, played by Julianne Moore in the film Still Alice, said Ritchie.Alice first suspects she has Alzheimer’s when she gets lost, in familiar terrain, while jogging. “That early scene captures it perfectly,” said Ritchie, who was involved in setting up the project with Professor Craig Ritchie (no relation) of Edinburgh University. “It is a loss of navigational skill.”

The project – funded by the Alzheimer’s Society – involves the study of two groups. The first consists of people aged 41 to 59 with close relatives who have developed Alzheimer’s and who are considered to be at relatively high risk. The second is made up of individuals whose lives have not been touched by the disease.

One of the earliest findings, outlined in a paper to be published in the journal Alzheimer’s and Dementia, shows that those who were at higher risk were poorer at tests that measured ability to visualise their position. They also tended to have a small hippocampus, a region of the brain involved in navigation.

Julianne Moore on Still Alice: ‘The idea our inner self could be taken away is very frightening’

The Four Mountains test developed by Cambridge University neuroscientist Dennis Chan is a key ingredient. It involves showing people a picture of a mountain and asking them to identify it in a selection of four other landscapes. There is considerable variation in ability and it provides scientists with a powerful tool to pinpoint those suffering hippocampal degradation. “At present we use computer screens to administer the test but in future we plan to use virtual reality headsets,” said Ritchie.

Cate Latto, who volunteered to take part, feels that loss of navigational ability reflected an important symptom of Alzheimer’s. “My mother developed the disease in late life but even when she was relatively young she could never remember where she put her car keys or where she left her car. As children, we spent our lives hunting through car parks trying to find where she had left it.”

It remains to be seen how effective tests based on measuring navigational prowess will be in predicting who will develop Alzheimer’s in later life. It would also raise ethical issues. If there is no effective treatment for Alzheimer’s why pinpoint those at risk in middle age? What could be gained?

There are several answers, say scientists. Drugs that are currently ineffective may prove far more potent if given during the disease’s early stages. In addition, it is now known that regular exercise, healthy eating and giving up smoking – which improves cardiovascular health – can also help. “There are life-style changes that can help reduce the risk of the disease,” said Ritchie.

This point was stressed by Doug Brown, research director of the Alzheimer’s Society, which has just launched its Unite Against Dementia campaign. “Dementia isn’t just an issue for older people, it will affect us all, and all of us can help find the solutions. As this study shows – people in their 40s and 50s can make a huge research contribution that could help shape the future.”

Getting lost may be the first sign of Alzheimer’s, scientists discover

Why I stood up for British Sign Language in parliament | Dawn Butler

Yesterday I made history by becoming the first member of parliament to ask a question in the House of Commons using British Sign Language (BSL). I have always fought for equality for all, and am pleased to have been able to help raise awareness of BSL. But recognising one struggle should not detract from recognising another – it is important to focus on equality for deaf people and those who are hard of hearing.

I have submitted an early day motion, which I hope will speed the way towards a BSL Act

Tomorrow will be the 14th anniversary of the official recognition of BSL as a language in its own right. But my request yesterday was that BSL be given full legal status in this country, which is why I asked the minister to bring forward a BSL bill. It’s a big concern for a large part of our society. There is a significant BSL community in the UK with an estimated 151,000 BSL users, 87,000 of whom are deaf. A British Sign Language act would give BSL the same status that other languages have in the UK. Deaf people deserve the right to communicate and live their lives with their preferred language.

BSL has been used in the Commons before – but never to question the government. That’s why, as an ambassador for the Brent and Harrow United Deaf Club, in north-west London, I invited some members to watch proceedings from the House of Commons public gallery. I have a level two qualification in BSL, but to deliver a question under that kind of pressure was something else entirely – I was pretty nervous about getting it wrong!

However, I felt it was hugely important to raise this question using BSL, not only so that many deaf people and those hard of hearing could understand what I was asking, but also because it signifies the seriousness of the issue at hand. The MP Rosie Cooper, whose parents are deaf, helped me to rehearse, and Rachael Maskell, another Labour colleague, started signing to me when I sat next to her, which was a nice surprise.

We need to make parliament representative of wider society. One important part of this is to make parliament as open and accessible as possible. Some great steps for equality have been taken in the house, helped by the efforts of our modernising Speaker, John Bercow – but there is still much more to be done. So I’m delighted that asking my question in sign has raised awareness for this cause.

Tomorrow’s 14th anniversary of the official recognition of BSL was a hugely significant moment, and is a date to celebrate with great pride. It gave deaf people the basic recognition they deserve. But we must also acknowledge that there is still a way to go until BSL is equal under the law. The only way to give the deaf community the equality and recognition they deserve is to bring a British Sign Language bill before parliament to address all these issues. Such a law would surely garner support from all sides of the house.

Legal status would ensure that British Sign Language is protected. Information and services would be produced in BSL, therefore giving equal access. It could put BSL on the national curriculum and ensure that it is offered in schools, as other languages are. This would enable BSL users to access education in their first language.

Many won’t even realise that we are currently in the middle of #SignLanguageWeek, with charities raising awareness of the importance that BSL has on hundreds of thousands of lives – hopefully my question can help that cause. Earlier this week I held an event in the Speaker’s apartments to promote the UN international day against race discrimination (for which I will be leading a debate in Westminster Hall this coming Tuesday) – and I invited staff from St Michael’s Nursery, in Brent, who are unique in that they teach their children, aged four and five, sign language. All schools should follow that example and teach basic sign language.

I have submitted an early day motion, which I hope will speed the way towards a BSL Act. And I hope many more MPs will pledge their support to this important campaign in order to enshrine these rights into law. I know that colleagues from the Labour party will support this cause, but in order for such a law to pass, we need the government to get on board too. I hope that it will.

Why I stood up for British Sign Language in parliament | Dawn Butler

My awareness campaign helped get 40 people to sign up as organ donors

My mum, Patricia, has polycystic kidney disease (PKD), a genetic disorder that ends in kidney failure. We always knew she would eventually need a transplant and I was the only one in the family who was able to donate. My two sisters also have the disease and my dad has been living with cancer and receiving chemotherapy, on and off, for over 20 years.

Mum didn’t want to take a kidney from me, even though she was slowly dying – she didn’t want to put her child through surgery. We were both scared it wouldn’t work and what impact that could have on us emotionally.

But when her health deteriorated so much that there was a risk she would be too sick to receive a kidney if she waited any longer, we decided to go ahead. I donated my kidney in February this year.

I was asked what I wanted to do if the surgeons found they couldn’t give my kidney to my mum after all. The options were to either destroy it, pop it back inside me or donate it to someone else who needed it desperately. The choice was easy. Even though my sisters have PKD and will one day need a kidney, they didn’t need it yet – and someone else did. I suddenly realised the significance of what I had to give and the difference it would make.

The transplant changed our lives – we don’t have that constant worry any more. We spent two years visiting the renal ward in hospital and met other patients, their families and friends. I spent time in recovery with some patients who had received an organ from a stranger. The joy and relief in these patients and their families is indescribable. To be able to give new life to someone makes organ donation something very special.

I’m a human resources consultant, and have been working with the League Against Cruel Sports, where chief executive Eduardo Goncalves and his team supported me through my recovery after the operation. I received many personal messages, cards and flowers from my colleagues.

When Eduardo, who has himself donated a kidney to one of his sons, asked me to work with him on building awareness of organ donation, I was delighted, as I knew that the staff would be very engaged. They all have a passion for animal welfare, but also really care about people.

We wanted to encourage staff to consider joining the donor register and we did so by sharing our experiences of kidney donation. After telling our stories, and how we felt as a result, 98% of all staff at the league joined the donor register online.

I made a difference to my mum’s life, and to mine, when I donated my kidney. I made a difference by being involved in the awareness project – and thanks to the project, 40 people at the league will now make a difference to other people’s lives by being on the register.

Organ Donation Week runs until 11 September.

The day I made a difference is the Guardian Voluntary Sector Network’s series that showcases the work of people involved with charities. If you have a story you want to share email voluntarysectornetwork@theguardian.com with a short summary of your experience.

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My awareness campaign helped get 40 people to sign up as organ donors