Tag Archives: research

When a simple cold becomes a big deal

Having  had a stupid cold for the last 3 weeks made me think of the ‘nuisance’ analogy of having a cold and comparing it with some of the symptoms of Alzheimer’s that people can share with me and that everyone can relate to. It’s not the feeling unwell, it’s the nuisance of the extra symptoms a cold causes. The nuisance of the fuzzier head becomes a bigger problem. I’m sure you’ve all experienced a head cold – where the head feels foggy, fuzzy and heavy – welcome to our daily world. When you have a cold on top of what’s normal it becomes even more difficult to find the right words. I can understand now how simply feeling under the weather can now take on a different meaning.

Questions were also asked as to whether the extreme symptoms were being caused by the trial drugs. The constant headache for a fortnight. The sinus pain. There’s just no way of knowing. What do you treat? All very confusing and wears you down if you let it. So now I’m on antibiotics to try to treat the sinus pain I’ve had for 2 weeks – yes, I know we’re all suppose to reduce the amount of antibiotics we’re using, but this appears to be last chance saloon time. If that doesn’t work I may have to reconsider whether it’s the trial drugs and stop them instead……

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Meeting to promote ‘Join Dementia Research’

Last week I was fortunate enough to be asked to speak at a meeting being held in Wakefield: the National Institute of Health Research Patient, Carer and Public Involvement away day. They were developing their strategy for the year ahead.

I attended with Sarah Daniels, Dementia Research Project Manager, as a lay member of Join Dementia Research. We were there to promote the forthcoming national launch of Join Dementia Research which is taking place on Tuesday 24th February. Both of us are involved with the launch down in London on that day – more to follow next week.

We decided that I’d go first with a talk about my journey and difficulty finding research:

I have a vested interest in research being carried out in the field of dementia. Being diagnosed with a progressive, deteriorating terminal illness focuses the mind on the here and now. If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn medical enigma. I’m not naïve enough to think that if a cure were found tomorrow that it would mend those parts of my brain that are broken, but it would rid my daughters and all the generations below me of that ‘inevitability’ that a diagnosis brings.

I spoke of the post code lottery that appears to exist in whether patients are offered research at the point of diagnosis. No clinician on my journey broached the subject of research – I had to go looking for it. I knew from my attendance at the Royal College of Physicians, where I  met researchers, that they found it difficult to recruit volunteers, yet here I was having difficulty finding research – crazy.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research. Where once they would have to assess their applicability, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public sign up for themselves.I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset to state in their Lasting Power of Attorney the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish – to talk to their family about their wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

The war on cancer and the amount of funding given to cancer research has seen a revolution in treatments being available – a cancer diagnosis is no longer the death sentence is was 40 years ago. We need the same to happen in the field of dementia research and Join Dementia Research will give us the tool to be able to bring together researchers with willing volunteers.

After Sarah delivered her presentation we were met with many questions – always a good sign. It evoked dialogue and discussion and they invited us to stay for lunch – another good sign and very nice too – so it was a very worthwhile visit.

More  on the launch next week………….

Fingers crossed day!

Today, I’m due to get my first delivery of the trial drugs I spoke about in a previous blog. I’ll hopefully be taking Minocycline, which is an antibiotic currently used for the treatment of acne. The aim of the trial is to determine whether it might be of benefit in Alzheimer’s disease by slowing the expected rate of deterioration.

‘Inflammation of the brain is believed to play an important role in Alzheimer’s disease and it’s progression. Minocycline has been shown to have an anti-inflammatory effect in other research and is a potential future treatment for Alzheimer’s disease.’

This type of trial is becoming the way forward – by trialling drugs, already licensed for use of another kind to treat a different kind of condition. Developing brand new drugs cost millions and takes years, so using drugs already in use and testing them for other uses seems a very good use of time and funding.

I need your help! I said at the beginning that ‘I’ll hopefully’ be taking the drug……….. While I’ve categorically told them I don’t want the placebo. I’m not convinced they’ve listened. So to give me an even better chance of getting the real thing, can you all help me by crossing your fingers and toes in the hope that I don’t get the placebo!

Power of multi-people positive thinking –ha! And even if it doesn’t work, I should be free of acne!

What have I got to lose?
What have I got to lose?

Follow on from yesterday’s blog

I had another thought following on from the workshop in London which I spoke about yesterday……..

During the discussions, the researchers still seemed to be in the realms of the ‘elderly’ when they spoke of dementia and the types of trials they were undertaking.

Whilst the elderly are undoubtedly a signficant group, I highlighted the fact that, an ageing workforce, combined with younger people being diagnosed, would pose different challenges for the future and it would make sense to start asking those questions now. It will be a whole new generation of people with different needs and requiring different types of research. For example, more studies are needed on ‘working well’ with dementia and the needs, not only of those working with dementia, but also a need to support those who are trying to juggle work and look after someone with dementia. You may or may not remember but I’m due to meet with NHS Employers with regards to two Toolkits they are working towards – one to support employees with dementia and the other for carers. The meeting is now taking place at the beginning of February so watch this space………..

I’m currently part of the research being carried out by Dr Louise Ritchie from the University of the West Of Scotland into dementia in the workplace and they’re in the process of asking for more funding for this to develop further. I hope they’re successful. There are lots of good engagement projects coming out of Scotland.

I also think my generation will have different expectations of care homes in the future and this could also make for a very interesting study in preparation for future needs. The fact that the National Institute for Health Research is planning to consult with those affected by dementia can only be good and may bring about more ideas and thoughts on future needs.

We’re heading in the right direction but so much more needs to be done, but this can’t be achieved without more talented individuals being attracted into dementia research and people with dementia openly being offered the chance to take part in research.

A day spent with leading researchers

I was invited to attend a workshop last Thursday at the Royal college of Physicians in London as a lay representative of Join Dementia Research – another WOW opportunity for which I’m grateful.
The workshop was attended by leading professors and specialists in the field of dementia research. The prospect was quite daunting but once we started to talk about the ‘slidy thingy’ on an IPad and they knew exactly what I was talking about, I settled down:) I also sat next to Professor Murna Downs, from the University Bradford so we were able to talk about her colleagues there, as I’ve been involved with them in the guise of Research Network volunteer for the Alzheimer’s society.
The aim of the workshops was to identify and consider new approaches to clinical research in dementia which could be taken forward by NIHR – National Institute for Health Research.

A leading researcher into cancer gave a talk on new approaches being adopted in the oncology world which was very interesting, after all, research into cancer has come on in leaps and bounds. There are quite obvious differences between the outcomes of cancer and dementia, but we have a lot to learn and a lot to gain from adopting and adapting some of their methodologies.
We took part in 2 workshops, both of which were very interesting – the language lost me some of the time – but I was able to contribute, put my point of view and was listened to. It was a fascinating day. I was privileged enough to meet some of the leading brains in dementia research and it was fascinating to see my world from their viewpoint.

The surprising outcome for me was that it highlighted 2 very concerning issues. I naively thought that there would be a close connectivity between the research community and the NHS – this doesn’t appear to be the case.. Whilst in selective areas there is a close relationship, in the majority there appears to be a very wide gap due to ethical concerns amongst GPs and NHS clinicians. The Researches described them as ‘protecting’ their patients from the research world. In my mind this is wrong – clinicians and GPs should give their patients a choice. It is not up to them whether or not a patient takes part in research. It should be the patients who are given enough information to be able to make an informed decision as to whether to volunteer.

It appears to be the classic ‘postcode lottery’ as to whether you live in an area that promotes and has research available. I personally think that the seed should be sown at the point of diagnosis or even before and regularly discussed as an option. After all, in the NHS, as someone who works there, aren’t we always talking about the importance of patient choice.

The second was the frustration that this brings both parties. The NHS has masses of data that would be valuable to researches – none more so than who has been diagnosed. I’m not saying they should ‘sell’ patient data by any means – definitely not – but, again, it should be down to patient choice. Public perception of ‘research’ seems to centre on clinical trials, but this is only one strand. Research is also ongoing into the care and prevention of dementia – how to live well with dementia. Researchers find it difficult to recruit volunteers and volunteers find it difficult to find research. This is where, hopefully, the new Join Dementia research database will succeed. Volunteers will register on the database to express their interest and researches will detail the research taking place. One can then be matched with the other and then enough information can be given to the volunteer in order to make an informed decision as to whether to take part.
A very interesting and enlightening  WOW day.

Alzheimer’s Society – new opportunities from a bad situation part 1!

When I was diagnosed with Alzheimers, the first web site I logged onto was:

http://www.alzheimers.org.uk/

I immediately joined the society and sent off for many of their marvellous, no nonsense, self help booklets – my postman wasn’t happy with me for a few weeks! I watched many videos of people who also had dementia and listened to their stories and I no longer felt alone. Everyone has a different experience of dementia, but the fact that we have dementia seems to bring us together.

The information I found on this website in the first month was  so critical that I began to think what I could do to help them. I then came across:

research@alzheimers.org.uk

This was my first ‘WOW’ day since diagnosis – you’ll get to hear about others over the next few days. It was the start of many opportunities I’ve been given to work with the society. They have a strong network of 250 Research  Volunteers, ( and are always looking for more!), to comment and give their views on funding applications. This gives me the opportunity to influence and encourage research into dementia – from the perspective of someone with dementia.

I had a wonderful training day at their headquarters in London. I met some very warm, inspirational people – carers, scientists, researchers and those with a general interest in dementia research. Everyone had different reasons for being there, yet we all shared a common goal.

We all have the support  of regional coordinators. My coordinator, Barbara, has been with them from the start, is very knowledgeable and a great source for information and support.

Since joining I’ve been asked to comment on various other proposals via email. I’ve had the pleasure of  talking to Professor Jan Oyebode from Bradford Dementia Group at Bradford University after she asked me to comment on a draft proposal before submitting for funding.

When would I have had the opportunity to ‘give my opinion’ on research papers if I hadn’t been diagnosed with dementia. Out of every tragedy can come something positive if you go looking for it.

Guest blog: my daughter Gemma

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My turn to give mum a break for the day! I loved Sarah’s thoughtful, reflective post and it inspired me to list 7 things I’ve learned since my mum was diagnosed:
1) Memories might make us who we are, but they’re not the whole picture. Our emotions, our senses, our day to day interactions with people – they’re vital too. So my mum will lose more memories in the future, but can still take in a wonderful view, accept a hug, enjoy a home cooked meal, give Billy a cuddle…and I appreciate these moments more than ever.
2) I’m so full of gratitude. To some this might sound strange (and a bit cheesy) but I really am more grateful than ever for all the wonderful things in my life. For example, my partner Stuart and I recently went to a lovely hotel spa for my birthday. We’ve been there before, but this time we really relished every single moment and took the time to take it all in. Because it’s been a bit of an emotional rollercoaster recently, with lots of sadness at things lost and how unfair it all is, I appreciate the good things that much more.
3) I said to mum recently that I feel like a curtain to a whole new world has been lifted. I didn’t know much about dementia before and nor do lots of people. I’ve certainly had some ‘interesting’ responses to the news in the form of rather insensitive comments (thankfully this is very rare). But I completely understand. If you’re not touched by dementia, why would you know what to say, or what a diagnosis really means? And of course, it affects everyone differently, so there’s no ‘one size fits all’ response. Through my mum, I have access to a whole world of people living with the condition, carers, researchers, activists…and it’s inspiring! But I wish it wasn’t so hidden away – I want all the negatives and the positives to be out in the open for everyone to see.
4) This is why I’m so proud of my mum. That sentence doesn’t do it justice really. I can’t put into words how proud I am. My sister said recently (sorry to steal this from you Sarah!) that it’s as if having dementia hasn’t changed my mum…it’s just enhanced all the best parts of her personality. I couldn’t have put it better myself!
5) I’m in the latter stages of doing a PhD at the moment. I used to practice in the subject I’m now researching, and to be honest I had started to feel like I was a ‘cop out’ for not remaining on the frontline. But my mum is so passionate about research and how important it is that’s it’s made me feel more comfortable with my decision. Now to actually finish my thesis…
6) I don’t sweat the small stuff anymore – or the big (ish) stuff for that matter. For example, if I lose my keys, or get a date wrong, or get lost – it just doesn’t affect my day. Or if I reverse out of my drive into a parked vehicle…that happens to be my partner’s car…that happens to be a company car…well, no one was hurt and these things happen so I’m not going to waste energy beating myself up about it. (I can’t say Stuart’s reaction was quite the same).
7) I really do appreciate how lucky my sister and I am regarding early decision making. I’ve heard terribly sad stories where people don’t know their loved one’s wishes and they have to make heart-breaking decisions in the later stages of dementia. It was a very emotional, difficult experience to complete the Power of Attorney paperwork with mum but I know now that her wishes will be respected and that means a lot to me.

I could write about many more things I’ve learned but these feel like the most important to share right now. If I could sum up my feelings in one sentence, I’d say my mum is still my mum and always will be.

Mum giving me the gift of reading :)
Mum giving me the gift of reading

Getting the right medication

It’s 3am when I’m writing this blog – don’t worry, I won’t click ‘publish’ until a sensible hour as you may stop reading if email alerts come through in the middle of the night!

I’m taking Donezepil – a drug they believe will slow down the progression of Alzheimer’s –  it has a long list of  side effects including insomnia, hallucinations and tiredness……..well, they were right there. I really, really, really am grateful to those marvellous researchers who developed the drug. I just wish there was a way  you could produce medication without such side effects . I know that’s an obvious statement and I’m sure there will be biochemists out there chuntering, ‘if only she knew’!! There will be amazing people out there beavering away at reducing side effects I know, but to experience them makes living with a  condition even more miserable. At 3am in the morning, the advantages of taking a wonder drug pales into insignificance when compared with the side effects being experienced at the time, so I’m sorry if I sound ungrateful.  It’s always made me laugh when medication for the elderly and confused has ‘diarrhoea’ as a symptom – the very thing that can make life miserable for the individual and carer alike..

Whilst I’m glad that all the talented individuals out there are dedicated enough to work on finding new drugs for dementia, it would be really useful if more work could be done on reducing side effects that, at this already difficult time, exacerbate the problem. Exhaustion through lack of sleep, continual headaches, insomnia etc. etc., none of which were present before, now cause new problems.

I realise there will be perfectly sound scientific reasons why you can’t have  drugs without side effects and the side effects may appear minor compared with the disease, but, oh, for the best of both worlds to exist. The talented individuals who tirelessly work towards new discoveries would get a HUGE brownie point from me (and I’d even bake them my infamous lemon drizzle cake)  if they could work on reducing side effects associated with drugs. End of 3 am rant………tomorrow’s another day……….or is it today?

PS: On a lighter note, I’ve started a gallery to share photographs of people and places I love. You can find it next to the ‘Home’ button 🙂

My first day of blogging!

Today is the first day of recording my daily ramblings of living with dementia. Why today? Well, my experiences up until now have always been as though Alzheimer’s was in the future. This week has been a bad week and I’ve realised that Alzheimer’s is now part of (and increasingly encroaching on) my life. So today seems as good a day as any to acknowledge the need to learn to live with it and adapt my life with each challenge it throws at me.

Will anyone read this? Maybe, maybe not. The purpose of venturing into this whole new world is to allow me a way to record what it’s like to live with dementia as the condition takes hold. To write my thoughts, experiences and views. I think both academics and professionals in all fields – cause, cure, care and prevention- could find my ramblings a useful insight into the reality of day to day living with Alzheimer’s. Others may find they too have similar experiences which lead to the acknowledgement that they are not alone. However, if the only purpose it serves is the ability to give me the opportunity to empty my head of thoughts and tangles in order to make room for new thoughts, then it will have been a useful exercise.