Support for our charity comes from unexpected places all the time!
A group of seventeen 16-17 year olds joined Harpenden
National Citizen Service this summer with an aim of supporting local charities.
They spent a week taking part in outdoor activities, a
second week learning life skills such as first aid training, budgeting and
meeting employers. The final two weeks they chose several charities to support.
Dementia affects so many of us and so they related to our cause, after watching our 3-minute video, showing the impact of music on those living with dementia. Though the tears, they decided that Music for my Mind was the charity they had to raise awareness for.
It was the summer holidays, so what better than a stone hunt
for members of the community?! 30 stones
were decorated and placed around Harpenden, Hertfordshire with details of our
website to visit. One stone had ‘winner’
written on the back where the lucky finder would be awarded a prize.
Did you find any of these beautifully drawn stones? Or even better, were you the winner? Let us know or send us your pictures with the stones! You can contact us here.
While carrying out work for the charity, whether that be in care homes, in talks with businesses and other charities, or even socially explaining what Music for my Mind does, we are constantly amazed by stories of personal experiences of music in dementia care. It seems everyone has a relative who, when living with memory loss, found solace – and in some cases momentary restoration – in their favourite songs.
These memories are incredibly heart-warming, really confirming to us that the charity is doing valuable work, but all too often the quantity of them leaves us ourselves forgetting who said what, which song which person sang along to, and most of all how many we have heard.
Well, now we are going to put this anecdotal evidence to work. Utilising the interactive elements of our website, and in support of this year’s theme for the BBC Music Day (Music and Well-being), we have created a ‘Wall of Memories’.
Music for my Mind would like to announce its newest venture, which is the ‘Wall of Memories’.
This is an interactive chance for you and your family to share experiences of music in care for people living with dementia. If you have ever witnessed the transformational power of music for those living with memory loss, or know friends or colleagues who have, we want to hear from you! Simply click on the button below, fill out the form and share your personal experience with us. We will then pin it to our interactive wall, creating a memory collage of harmony and hope.
This project will help Music for my Mind to show a real demand for music therapies in dementia care, with a whole host of personal experiences displaying the power of song. Proof of demand is essential for our ongoing projects and our hopes to secure funding, so the more memories you can share the better. Even a small sign, such as a tap of the foot, a smile or a snatch of lyrics, could, if shared, lead to great things in the future of dementia care and the families of those who live with memory loss.
If the first of this series of blogs was about the past of Music for my Mind, then here we shall address – you guessed it – its present.
And dementia is indeed, both for those living with it and their families, a very present issue. As we have already seen 850,000 people live with dementia in the UK alone, and of them: 61% feel anxious or depressed, 40% feel lonely or isolated from a community because of their condition, and 52% do not feel sufficiently supported by the Government. With predictions that by 2051 there will be over 2 million people living with dementia in the UK, these issues are only on the increase. But this is now not merely a healthcare problem, but one which does and will continue to severely affect the British economy, with £26.3bn spent on care, predominantly out of the pockets of unpaid carers who are often economically active family members (all stats courtesy of the Alzheimer’s Society.
This is all rather bleak, but there is a light at the end of the tunnel. There are a number of organisations which are trying to solve and allay the severity of the numbers above. Aside from MFMM, there are charities such as Live Music Now, which uses creative music Apps, encouraging care-home residents to become interactively involved in music composition, and Music In Hospitals and Care, which employs professional musicians to perform for residents and display the restorative power of music first hand.
However, there are two distinct
obstacles to the great work all of these charities do, the first of which is
the hurdle before all the grand plans of life: money. Dementia already costs
around £30,000 per person per year, and care programs which can cost anywhere
between £200 to £3,400 annually are the first to be cut in already expensive
field. Personal Health Budgets (PHBs) and Integrated Personal Commissioning
(IPC) can cover some of these costs, but these are often only available to the
most severe of cases, and focus more on physical need than mental recuperation.
This means that independent charities must cover the costs for musical
therapies, using a combination of grants and crowdfunding both to continue
existing treatments and research more effective ways of providing care for
those living with dementia.
The second obstacle, which despite having a friendlier name is no less formidable, is the National Institute for Health and Care Excellence (NICE). NICE’s job is to ensure that the standard of care in UK hospitals and care homes is both equal throughout the country and, as they say, excellent. NICE seems rather like a particularly strict teacher, whose intentions and qualifications are beyond question, but who is incredibly hard to convince that you did get that question right and you do deserve that ‘A’. Owing to the limited amount of money the Government, and especially the NHS, has to play with, any new innovation in care must come with irrefutable evidence of triumphant success to justify the expenditure. Thus, for the world of music and dementia care, where much evidence is anecdotal and results are hard to quantify, getting past NICE is fraught with difficulty. Charities can and do operate in care homes, playing music live and through technology in order to care for residents, but to get this to be the standard level of care across the country (MFMM’s major goal) is a task not to be taken lightly.
And yet, we do seem to be moving further down that tunnel towards the sunshine. In 2018 the International Longevity Centre, funded by The Utley Foundation, commissioned a report on the current status of musical therapies in the UK and where they should be, knowing that dementia is a growing issue. Starting with a solid ABBA reference (‘Thank You For The Music’ for those of you who couldn’t guess), the report goes into incredible detail about music, its effects and its use in healthcare. At times it really doesn’t hold fire, talking of ‘devoted advocates operating in a complex and poorly coordinated ecosystem’, but is generally incredibly positive about what is already being done and righteously bellicose about what is left to do. It highlights the ‘promising evidence which is quickly gaining traction’ and demands (thinly veiled under the word ‘recommendations’) new research, new reviews, new postings – including a ‘high profile Ambassador for Music and Dementia’ – and a wave of increased funding and awareness of what music can do for memory loss (7-8).
But where does MFMM fit into this? Although it does often operate in care homes, MFMM, not to blow its own trumpet (but
yes, toot toot), is more of an intellectual force. It plans to develop
technologies and integrate them into a standard care package available for all
(a.k.a. convincing NICE to give us that ‘A’), shown here in their four-point
develop cost effective and user-friendly technological solutions to enable
rapid creation of personalised playlists for people living with dementia.
develop cost effective and user-friendly solutions for the delivery of
personalised music in a range of dementia care settings.
build the evidence base for the effectiveness of personalised music to improve
the quality of life and wellbeing of people living with, or affected by,
promote awareness and take up of personalised music to improve the quality of
life of people living with, or affected by, dementia.
Research is the key to progress, and as only £90 of that £30,000 per person annually is spent on research, the work done by MFMM is invaluable for the future of dementia care. The next blog post will go into more detail about this future, but for now it is safe to say that MFMM has its eyes fixed firmly on the end of the tunnel, and can almost feel the warmth of the sun.
Over the summer months, we have had the pleasure of welcoming an enthusiastic and aspiring volunteer, John Peatfield, after a serendipitous meeting with Keith on a flight from Bordeaux last year. John became fascinated with Music for my Mind and the project we are working on, leading him to volunteer his various skills to our cause. We value the way our audiences perceive us and strive to get our goals and messages across to reach wider audiences from all demographics. Which is why we invited John to have a deep look at what makes Music for my Mind, how it works and what are its aims. Over the coming weeks, we will be sharing with you his three pieces that explore the past, the present and the future – from a different perspective.
– Music for my Mind
Hello! My name is John Peatfield and I am currently a final year English student at UCL. Over the last few months I’ve had the enjoyable task of becoming involved with Music for my Mind and getting to grips with their aims, methods and successes – producing three blog posts as an introduction to the Charity’s work and the field of dementia care generally. As well as this, my fellow UCL student Chirag Rao (medicine) and I have come up with a survey on musical awareness which will help Music for my Mind’s practical work. We’re excited to share with you the fruits of our labour in the coming weeks. It would be wonderful if you could join in the survey, either yourself or encouraging others of the right vintage to participate; the critical vintage is aged 30-60 and we all have parents, siblings, children or grandchildren of that age and they have lots of relevant friends and family who could help achieve the numbers we need. Stay tuned!
– John Peatfield
Music and Memory. Anyone
whose home is not under a rock, or whose ears are at least mildly attuned to a
decent melody, will have certain songs that bring back certain memories.
Whether they be painful ones, perhaps of a family member ill-advisedly dancing
to Dexys Midnight Runners’ “Come on,
Eileen” at a wedding or listening to Queen’s “Don’t Stop Me Now” when training for a grueling marathon, or
happier ones such as “Jerusalem” in a
school assembly or Madness’s “It Must Be
Love” from a period of courtship, music clearly has a tremendous ability to
make time long ago as fresh as yesterday.
It seems then only a small “Logical Song” leap to what Music for my Mind (MFMM) calls its mission. With Memory Loss, sometimes called Dementia, comes heightened evidence of the transcendent ability of music to “Turn Back Time” (I promise I will stop quoting song titles now… maybe). The general idea, and I must admit it is a rather simple one, is to play a selection of songs, mainly from the person’s youth, with which they may have an emotional bond and which may then affect their mood – almost always for the better. Sounds obvious, doesn’t it?
And yet, despite large amounts of anecdotal evidence, as well as some examples available in the MFMM produced video available on their website, very little has been done to find in theory what is so obvious in practice. That is until May 2016, when under the auspices of MFMM’s founder, chairman and all-round patron saint, Prof. Keith McAdam, the charity was registered and its real work began.
I personally met Keith
on rather a grim EasyJet flight back from Bordeaux and, unaware of his
celebrated career (a word which shall make his ears burn, I’m sure), I waffled
on about some old nonsense for an hour and 30 minutes. Fortunately enough, it
takes around an hour and 45 minutes to fly from Bordeaux to Luton, giving Keith
a quarter of an hour to tell me about his new charity and the work it was
doing. This was enough to convince me of its promise and make me very keen to
Meeting Keith again in rather more comfortable surroundings (a sunny room in the Royal College of Physicians, just by Regent’s Park) I thought I’d better catch up on what I’d missed. Googling the man himself tells you an awful lot about how good he is at cricket, but not about his experiences working in a HIV clinic in Uganda, where creative therapy and community outreach were the determining factors as to whether people were willing to even admit that they were affected by the disease, let alone allow anyone to treat them. Keith talks of how numbers at the clinic soared from 50 to 500 through simple changes, such as replacing the parlance for patients as ‘Victims’ with ‘mikwano gyaffe’ (‘our Friends’), and more energetic approaches such as the 5-part creativity program. This program included art sessions, games, social and spiritual support, enterprise classes and, most effectively, musical therapy. Doctors and Friends alike were able to cope with the daily extremes of the clinic and of the disease through music and song.
After returning from Africa, and completing a few other high-profile roles, Keith sought to use his experiences of creativity in healthcare, especially through music, back home. 850,000 people live with dementia in the UK alone, not to mention the families affected by the distress caused by the disease. And so, in line with the ‘of course, that’s so obvious, why didn’t I think of it’ approach MFMM revels in, Keith saw dementia as a prime target for musical therapy.
Things started slowly.
Keith assembled together an almost frighteningly sophisticated group of
entrepreneurs, experts, musicians, physicians, politicians and the odd peer to
help and advise him in the early days of the charity. Many of this group now
call themselves trustees, and many other business leaders and the vanguard of
technological advancement have joined their ranks, so much so I’m now rather
irritated I’m only in the Royal College of Physicians. Well, it’ll do.
Aside from his time in
Uganda and his own medical background, I ask Keith which experiences have
formed his own goals for the charity. He immediately speaks of Huguette, a
lady, now sadly deceased, who features in MFMM’s video. A Belgian national, she
married an English accountant and spent the rest of her life happily with her
new family in the UK. Despite her immersion in British culture, it was the
songs of her childhood, all in French, which restored her to her pre-dementia
state and cause her husband David’s legs to shuffle in such restrained joy in
the video. Keith tells me that most of MFMM’s key people were behind the frame
and it was this clear evidence of music’s restorative power which gave impetus
for the charity’s current position.
But, says Keith, we already knew that it works in practice. What we needed was proof in theory. To achieve this, the charity is involved in a vast range of enterprises, including app building, work in care homes, medical papers, scientific investigations and even AI (though Keith says that is under development, hush hush for now…). MFMM’s mission is to replicate Huguette’s experience in care homes across the country, using technology to make this level of transformation attainable for all affected by memory loss.
As our chat comes to a close, I ask Keith what kind of music he prefers to listen to, or what would he sing if forced into karaoke. A bit of rock ‘n’ roll? Euro-Pop? Grime, perchance? Or, knowing his proud Scots roots, that awful bagpipe music they play at reels? No, he says, giving me a weary look; anything you can dance to, with a high tempo and a sense of life. I suppose this is exactly what MFMM seeks to restore – that sense of life stolen by memory loss – and under the choreography of Keith, I am sure it will do just that.
A journey originating with the idea to organise a bus ride in aid of Alzheimer’s disease charities, after members of their families were diagnosed with dementia. A gathering of friends in the local pub on a Friday night turned that idea into a reality and the Tett family bike and bus ride challenge began!
The challenge was as follows: two groups will do the journey of circa 240 miles between Brewood and Brighton – half on push bikes and the rest using only public buses. The trip was to be accomplished over 4 days, starting from Brewood on 10 April 2019 and both groups met up each evening at set stops en route before finally reaching Brighton on Saturday 13 April where the journey was completed with recapping over another beer or two in celebration of the achievement.
We are grateful to be one of the chosen charities that the Tett family decided to raise money for, alongside Cancer Research. The Tett’s have been incredible supporters and they have expressed great belief in our project. We had the pleasure of knowing Huguette Tett, which you may have seen in our video, responding beautifully to her favourite French songs from her youth.
The total funds the family donated to Music for my Mind were £3,028, which will help us further on our mission to bring personalised music to everyone living with dementia, in order to improve their quality of life and that of their families and carers.
If you would like to organise your own fundraising event in support of our charity, you can get in touch with us by emailing firstname.lastname@example.org or using our contact form here.
Full-time or Part-time Clinical Research Assistant/ Associate – Dementia
Chair/Chief Executive of Music for my Mind
Music for my Mind is a new and timely charity aiming to bring personalised music playlists to people living with dementia. Although people with dementia may not be able to communicate with or recognise loved ones, amazingly they may still be able to sing along to favourite music from their teenage years. There are estimated to be 850,000 families affected by dementia in Britain, 50 million worldwide.
To date, the charity has been operating on a volunteer basis with a committed and well-connected Trustee Board. The success of our crowdfunding campaign indicates the breadth of public empathy for dementia and we have recently received Research Ethics Committee approval to proceed with our study. We have raised sufficient funds to recruit a team member for one of our highest priority positions – to seek to provide robust evidence through clinical studies that personalised music enhances the quality of life and well-being of people living with dementia, their carers, and family and that favourite music can change lives.
About the role
This post holder will work with the Founding Chairman of the Board who lives in Hertfordshire, supported by a Project co-ordinator. The Trustees are committed to building the evidence base that listening to personalised music playlists enhances well-being and quality of life for families affected by dementia. The long-term goal is to test the efficacy and cost effectiveness of this intervention for dementia in a large clinical trial.
Working closely with the Chair, you will deliver the small scale clinical studies with dementia patients in selected care homes to monitor the emotional and physiological impact of personalised music. You will compile personalised music playlists for residents living with dementia, with the help of their family members or carers. You will then test delivery methods of the playlists to residents in an attempt to improve well-being, particularly during stressful situations/ times. You will be organising and leading focus group discussions and interviews with residents, carers, and loved ones. You’ll be further involved in the analysis of subsequent data, both quantitative and qualitative, and contribute to the dissemination of findings across the wider community.
You will have a strong, demonstrable background in qualitative research as a social scientist, occupational therapist or psychologist with a strong interest and experience in musical interventions, or as a music therapist or musicologist with experience of clinical research, ideally working with older people. You will have knowledge of the concepts of clinical research and Good Clinical Practice, and have excellent communication, relationship management, and organisational skills and meticulous documentation and record keeping abilities. You will have a passion for music and an excellent understanding of and empathy with the practical needs, concerns and health of people participating in research (ideally of people living with dementia) and their families and care givers.
Music for my Mind is an important new initiative and this position creates a fabulous opportunity for someone who wants to make a massive positive impact on many people’s lives.
Having a valid driving license and access to a vehicle is essential as you will be required to travel between care homes in the Hertfordshire/ Bedfordshire/ Essex area.
Salary to be discussed – initially a 1 year fixed term contract. Probationary period of 3 months
We will consider full time (37.5 hours per week) or part time – to be worked flexibly as required.
This week the team at Music for my Mind visited a music session by The Last of The Summer Ukuleles at The Red Lion pub in Studham. They have chosen us as their charity of the year and presented our Project Assistant, Dimana Georgieva, with the first donation for the year.
The Last of the Summer Ukuleles are a group of volunteers who have gathered together to entertain people and explore their passion for the ukulele. They come from all around Hertfordshire and visit care homes, day centres and clubs, where they play everything from Formby to Cash to Oasis and The Zootons and other material from the 50s and 60s. All their proceeds go to worthy causes and this year they have generously chosen Music for my Mind.
We’d also like to thank the team at The Red Lion in Studham, who are the hosts for the monthly meetings of the group and who provide a great service and atmosphere. If you’d like to book the venue, you can contact them here: http://www.redlion-studham.co.uk/home.
If your company or organisation would like to choose Music for my Mind as their charity of the year, don’t hesitate to contact us here.
We are delighted to announce that Music For My Mind has been registered as a Charitable Incorporated Organisation (CIO).
Charity Commission Reference Number:1167246
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