So What Does “…to Live Well with Dementia” Mean?

Firstly, Happy Easter to you all and I hope you are enjoying a great weekend, even if it is somewhat chilly here in Scotland.


Last month quite quietly I think Age Concern published a new report entitled “Promising Approaches to Living Well with Dementia” which sets out to illustrate what it might means to live well with dementia in the UK currently. It is full of examples of interesting approaches which are already in place in some parts of this country, but as the report makes clear up and down the country there is a need to reduce the current postcode lottery that exists when you go looking for the help and services highlighted here. Please take a look and be inspired. There is no clear reason why what is discussed here is not available to all.

Good news for nurses in England this week as the new pay deal got another step closer to happening. Will it make you feel more valued? Will it make up for the years of enforced pay restraint? Probably not but at least it’s in line with inflation rather than below inflation. For details of the deal see RCN Nursing Pay  Now, what about everyone else working for the NHS and beyond?

Finally don’t miss your chance to visit the Age and Ageing journal who are currently publishing a free online collection of 15 papers to provide an update on the advances of pharmacological and non-pharmacological interventions in dementia over the last 15 years.

So go and download something interesting to read in between the Hot Cross Buns, Prosecco and Chocolate! 🐣🐰🥂🍾

UK National Pain Guidelines Released

New recommendations to help healthcare professionals recognise and assess levels of pain in older people were published this week in the scientific journal Age and Ageing. The guidelines were developed by the British Geriatrics Society, the British Pain Society, the Royal College of Nursing, in collaboration with researchers at Teesside University, Anglia Ruskin University, University of Bournemouth, Centre for Ageing Better, and the Centre for Positive Ageing. So with all that collaboration, they ought to be good.

When you look at what they are called that view doesn’t change. “The Assessment of Pain in Older People: UK National Guidelines” so I guess they are serious about the need to use them, so they have also made them freely available on the page, not as a download. So time to get reading but be warned they are 70 plus pages long.

It’s worth remembering what Professor Patricia Schofield, the lead contributor to the paper, said on its release

‘Pain in the older population has been largely neglected with the assumption made that it is expected as you get older. This document sets out guidelines for the fundamental first step in the process, which is how we identify and measure pain in this population. Hopefully health and social care professionals will take on board the recommendations and we can move towards more effective pain management in the future.’

This little video gives you a few reasons for getting familiar with the guidance and more to think about.


Strengthening the Human Rights of Older People

Guess where I was this week! Murrayfield, but not for the rugby! It was Dementia Champions Cohort 8 & 8.1 and DISL’s Cohort 2  graduation. Proud to be part of the team delivering these important programmes in improving health and social care for people living with dementia. For more details here is a very short video about the graduation.

So what else has been happening?

Help Age International has called again for a UN Convention on the Rights of Older People. Their newest report called “Entitled to the Same Rights” in which older women speak out about their rights shows again that the existing human rights mechanisms fail to adequately protect and promote the rights of older people. They are suggesting that a new international convention on the rights of older people, is the most effective way to make sure that all people enjoy their human rights in older age, and on an equal basis with others. There is more about what they want the Convention to include and you can download the report at

You can find out more about supporting the campaign for older people by getting involved with their global Age Demands Action campaign.

If you are part of an organisation you can join the Global Alliance for the Rights of Older People and work with other agencies seeking to promote and strengthen the rights of older people.

You might also want to find out about the UN’s Open-ended Working Group on Ageing who have been looking at producing a human rights framework for older people since 2010. See

It’s about time they got a move on!


Finally Getting Recognition and a Million Euros!


This week brought recognition to four neuroscientists who received the Lundbeck Foundation’s Brain Prize for their crucial research into Alzheimer’s Disease. The four scientists are Bart De Strooper from Belgium, Michel Goedert from Luxembourg, Christian Haass from Germany and John Hardy from the UK. They have been recognised for their highly specialised studies of Alzheimer’s disease and other dementia disorders and are now being awarded the world’s most valuable prize for brain research, the 2018 Brain Prize, worth 1 million euros (approximately 7.5 million Danish kroner).

Together, these four internationally respected neuroscientists have revolutionised our understanding of the harmful changes in the brain that lead to Alzheimer’s disease.

So what did they do? This is taken from the Lundbeck Foundation’s own news release about the awards and thank goodness I didn’t have to translate this from Danish.

So let’s start from scratch

German doctor Alois Alzheimer described the disease as far back as 1906, but no-one yet knows what causes its onset. Alzheimer’s primarily affects older people but can be seen in many adults under 65 years of age. Once the disease develops, brain cells gradually die and proteins accumulate both between the brain cells (beta-amyloid plaques) and inside the brain cells (tau tangles). These proteins have a function in the normal brain, but in people living with Alzheimer’s they are produced in an abnormal form, causing them to accumulate which leads to the disease.

So what have the prize winners contributed to our knowledge

“By the nineties, prizewinner Christian Haass already knew that beta-amyloid is not the result of a pathogenic process but that the protein forms naturally from precursors. Haass also identified and described the secretase enzymes which control its formation. Thanks to Haass’ research, we now know that the accumulation of beta-amyloid between brain cells is due to an imbalance in the production and the clearance of amyloid.

Bart De Strooper’s significant contribution was to describe in detail how the secretases are constructed and how they function. This insight led to the development of drugs which either lower production or increase clearance of beta-amyloid.

Michel Goedert has proved that the tau protein is the most important constituent of the tangles we see inside the neurons in Alzheimer’s. Goedert was also instrumental in proving it likely that tau itself plays a role in the development of Alzheimer’s.

Steen Hasselbalch, Professor at the University of Copenhagen and Alzheimer’s specialist, says: “Goedert’s most recent and very exciting discovery is that tau can spread within the brain. With this discovery, Goedert has shown that Alzheimer’s is more than just an accumulation of beta-amyloid. It has given us valuable new ideas for the development of therapies.”

Finally, John Hardy’s work focuses on the genetic mutations that can cause Alzheimer’s. In rare cases, Alzheimer’s disease is inherited, and there are families in which the risk of contracting the disease from one parent is 50%. Based on his genetic studies, John Hardy and his co-workers were the driving force behind the hypothesis that accumulation of beta-amyloid is the cause of Alzheimer’s disease. “

Their research achievements form the basis for development of the drugs that are currently tested as therapies for the disease.

All 4 are going to Denmark on 9 May to receive the Brain Prize at a ceremony in the Royal Danish Library Black Diamonds Building.

There is a bit more about their success on the BBC Health pages at

Alzheimer’s researchers win brain prize

Older People, Scams and Fraud


People lose an estimated £10bn to fraud every year. People of all ages and backgrounds are victims. However, older people are over- represented as victims of particular frauds, including pension and investment scams, postal scams, doorstep scams and telephone scams. Some older people are especially at risk, either because they are deliberately targeted or because they are vulnerable, for example if they are bereaved, lonely or living with dementia. The financial and health impacts can be devastating. Consider for example that people defrauded in their own homes are 2.5 times more likely to either die or go into residential care within a year.
OK, so I have made my point, but why has this come to my attention this week. Age UK and Action Fraud (who are the UK’s National Fraud and Cyber Crime Reporting centre), have joined forces to launch new pilot programme to combat scams targeting older Londoners. The new programme will initially be piloted in London with the aim of creating a prevention model that can be rolled out nationally. The programme aims to support older victims, and raise awareness of scams more widely to help empower older people to feel more confident at spotting and avoiding scams.
So I am not living anywhere near London. I am disappointed there is only one pilot site but happy that at least something is being done and thought, ‘I could do my bit to raise awareness particularly given the health consequences of being scammed.’ You can find out more about these from a great little Age UK booklet called “Older People Frauds and Scams” which you can download HERE, it was released in October 2017.
If you want to know more about the scams prevention and victim support pilot programme just click the blue link.
There is also a  video accompanying the new programme which you can access on this  Age UK News page
Which? on their elderly care pages also have a link to an advice guide and directory on their Scams and Older People page. There is also a nice little booklet from Citizens Advice Scotland from 2014; Called “Scammed and Dangerous: The Impact of Fraudsters” just in case you need to more about this problem and its impact up here in Scotland
Now all this information is no good just posted here so if you read this far, please share this with the people you know who will benefit. (That’s just about everyone!)