Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he argues for more high quality research into the possible benefits of music therapy for people living with dementia; as well as making the case for the development of dementia care strategies which include the vital insight of people trying to live well with dementia today, so we can improve the experience of care for the many people in future who will receive a diagnosis of dementia.
You can learn about Shibley’s book, Living Better with Dementia, here
It won’t have escaped you, hopefully, that the five-year English dementia strategy is up for renewal at any time now. The last one ran from 2009 to 2014.
Probably the usual suspects will get to command the composition of the new one. “Dementia Friends” has been a great initiative which has taught at least a million people so far about some of the ‘basics’ about dementia, but this ‘raising awareness’ is only part of a very big story.
In my book Living Better with Dementia: Good Practice and Innovation for the Future, about to be published by Jessica Kingsley Publishers, I argue that it is the people currently trying to live better with dementia who should be the ‘champions’ for the future. I believe strongly they should drive policy, not ‘leading Doctors’ or senior members of big charities.
My reasoning is as follows.
In a ‘cohesive’ (close) network such as A, members in the network are connected in close proximity. This builds trust and mutual support, discourages opportunistic flow of information, facilitating communication but minimising interpersonal conflicts. A cohesive network might be the hierarchical network of medical professionals.
A ‘sparse’ network (C) is effectively opposite to cohesive networks; but let’s say for the purposes of my example C consists of people with an interest in non-pharmacological interventions in dementia, including unpaid family carers.
In bridging networks, the ‘bridge’ (B) acts between disparate individuals and groups, giving control over the quality and volume of information exchange. I think of politicians such as Debbie Abrahams MP and Tracey Crouch MP, and the All Party Parliamentary Group on dementia at large, as people who can act as the bridges. These people are pivotal for policy formation.
I devoted a whole chapter of my new book to promoting leadership by people aspiring to live better with dementia.
Having all these people involved will improve the thought diversity and relevance of the new strategy for people actually living with dementia
We are currently in the middle Music Therapy Week 2015, dedicated to raising awareness about how music therapy can improve the lives of people with more progressed dementia. It’s no accident I’ve devoted the bulk of one chapter in my book to explain the brain mechanisms behind why music has such a profound effect on people living with dementia.
We, as human beings, all react uniquely to different music – there’s every reason to believe that certain people living with dementia, whether in the community, at home, in residential home, or a hospice, in other words wherever in the “dementia friendly community”, can hugely benefit from the power of music.
“Over the next five years and beyond the NHS will increasingly need to dissolve these traditional boundaries. Long term conditions are now a central task of the NHS; caring for these needs requires a partnership with patients over the long term rather than providing single, unconnected ‘episodes’ of care.”
In Rotherham, GPs and community matrons work with advisors who know what voluntary services are available for patients with long term conditions. Apparently, this “social prescribing service” has cut the need for visits to accident and emergency, out-patient appointments and hospital admissions.
Today sees a wide-ranging, open discussion of music therapy and dementia in Portcullis House, in Westminster. Prof Helen Odell-Miller, Professor of Music Therapy, Director of The Music Therapy Research Centre and Head of Therapies at Anglia Ruskin University, presented significant research findings at the meeting.
I feel music is not being given a fair ‘crack of the whip’ in the current policy. The first English strategy, “Living well with dementia: a national dementia strategy” , was initially launched by the Department of Health, UK in order to improve ‘the quality of services provided to people with dementia . . . [and to] promote a greater understanding of the causes and consequences of dementia’ (Department of Health, 2009, p. 9).
We could have done, I feel, so much more on research into music by now. We could have done much more to increase the number of music therapists in England by now. Maybe some of this is due to ‘parity of esteem’, which has seen mental health play ‘second fiddle’ to physical health.
There are, however, glimmers of hope though, I feel. For example, it was last year reported in the Guardian:
“Overseen by Manchester University, it is part of a 10-week pilot project called Music in Mind, funded by Care UK, which runs 123 residential homes for elderly people. The aim is to find out if classical music can improve communication and interaction and reduce agitation for people in the UK living with dementia – estimated to number just over 800,000 and set to rise rapidly as the population ages.”
Accumulating evidence shows that persons with dementia enjoy music, and their ability to respond to music is potentially preserved even in the late or severe stages of dementia when verbal communication may have ceased. Musical memory is considered to be partly independent from other memory systems. In Alzheimer’s disease and different types of dementia, musical memory is surprisingly robust, and likewise for brain lesions affecting other kinds of memory.
Given the observed overlap of musical memory regions with areas that are relatively spared in Alzheimer’s disease, recent findings may, actually, explain the surprising preservation of musical memory in this neurodegenerative disease. Jacobsen and colleagues (2015) found a crucial role for the caudal anterior cingulate and the ventral pre-supplementary motor area in the neural encoding of long-known as compared with recently known and unknown.
That’s why I believe we should support the British Association for Music Therapy (BAMT), the professional body for music therapists and a source of information, support and involvement for the general public. The title music therapist can only be used by those registered with the Health and Care Professions Council. So there is regulatory capture, if not corporate capture.
This year’s campaign by the BAMT focuses on the instrumental role music therapy has to play in supporting people with dementia and those who care for them. Indeed, the current Dementia Strategy acknowledges that music therapy, as well as other arts therapies, ‘may have a useful role in enabling a good-quality social environment and the possibility for self- expression where the individuality of the residents is respected’ (Department of Health, 2009, p. 58).
Leading research has suggested that music therapy can significantly improve and support the mood, alertness and engagement of people with dementia, can reduce the use of medication, as well as helping to manage and reduce agitation, isolation, depression and anxiety, overall supporting a better quality of life. But very recently Petrovsky, Cacchione and George (2015) have found that there is “inconclusive evidence as to whether music interventions are effective in alleviating symptoms of anxiety and depression in older adults with mild dementia due to the poor methodological rigor”. This reinforces my view that service provision will only be markedly improved if we invest in high quality research, as well as the allied health professionals who can offer high quality (and regulated) music therapy as clinical service.
As I argue in my new book, “Dementia Friends” is great – but we’ve gone way beyond that now. The “Prime Minister Dementia Challenge“, I feel, showed great leadership in prioritising dementia as a social challenge, and the “Prime Minister Challenge on Dementia 2020” follows suit.
Being honest, we haven’t got a good description of what ‘post diagnostic support’ means, and therefore what it precisely looks like, for dementia. But one thing that is very clear to me that we need to invest in the infrastructure, including research and service provision, to implement living better with dementia as a reality in England. But I remain hopeful that my colleagues in the music therapy world will be able to win friends and influence the right people.
Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.
Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he explores some of the work being done to reduce reliance on medication and increase our understanding and use of non-pharmacological interventions; looking to the future of dementia care.
You can learn about Shibley’s book, Living Better with Dementia, here
Currently, Alzheimer’s Disease International estimate that there are 47 million people around the world living with dementia. Whilst the policy planks of ‘prevention’ and ‘cure’ continue to attract attention, there is concern amongst many that the people trying to live better with dementia don’t get caught behind.
There’s been a concerted effort to look at the cost of drugs in the NHS in recent times. ‘Innovative drugs’ have been a big deal in the service, and it is reported that new innovative drugs approved by NICE between 1999 and 2004 added £800m a year to the UK drugs bill.
Irrespective of the cost of the drugs budget in England, one is right to query whether patients are being given the appropriate treatment based on the current best practice. A temptation of a medical doctor to prescribe a ‘magic bullet’ can easily explain away the ‘over-medicalisation of illness’, leading the Academy of Royal Colleges justifiably to take action earlier this year.
There are probably over 400,000 older people living in care homes, and possibly dementia ‘affects 80% of care home residents‘. With the scale of statistics, one is bound to be concerned at the potential volume of inappropriate antipsychotics scripts for people living with dementia. Prof Sube Banerjee helpfully reported on this issue in 2009 for the Minister of Care Services at the time.
Every chemical medication has its side effects. I am always impressed with the ease at which the pharmaceutical industry is able to market their drugs, given that there are 1000 billion nerve cells in the human brain all connected with one another directly or indirectly in various ways.
With so many different functions of the human brain, such as memory, attention, perception, language or planning, to name but a few, it has been a difficult task to work out which particular ‘hubs’ involving parts of the brain are particularly involved in certain functions.
The exact characterisation of wellbeing in dementia remains an active area of discussion. For example, five psychological needs had been described by Tom Kitwood – comfort, attachment, inclusion, occupation and identity. Identity itself has been subject to volumes of work, some empirical, but apparently the need for identity ‘involves maintaining a sense of continuity with the past, and some kind of consistency in the present life’ (Kitwood, 1997, p. 20).
In my book Living Better with Dementia: Good Practice and Innovation for the Future, identity is a really big deal. I suggest a possible way in which the human brain might be able to reactivate “sporting memories” from his or her own past. I also describe the powerful effect that music can have on the wellbeing of a person living with dementia.
Also, pervasive to my entire argument is that dementia should be recognised as a disability under the Equality Act (2010) and the United Nations Convention on Rights of People with Disabilities. This takes the argument one towards ‘rights based approaches’, imbuing potentially a ‘rights consciousness’ of what all people are entitled to. When you consider that people receiving a diagnosis of dementia can find the whole experience totally disempowering, as described clearly by Kate Swaffer in her groundbreaking work, the idea that some form of reablement or rehabilitation is incredibly powerful.
The human brain is uniquely baffling. According to Professor Nancy C. Andreasan, “When the psychologist Kay Redfield Jamison looked at 47 famous writers and artists in Great Britain, she found that more than 38 percent had been treated for a mood disorder.”
Some people when they develop a dementia acquire novel artistic talents. How this happens is still a mystery, but it gives a whole new dimension to the term ‘living better with dementia’.
Also, a few months ago, I was asked to introduce by Lucy Frost, a specialist nurse in dementia, a film in a small church in Brighton, England. This film called Alive Inside was a brilliant demonstration of how people living in residential homes would get ‘switched on’ by listening to music from a portable mp3 player, enhancing individual and collective wellbeing. In contrast to medications, a portable mp3 player has remarkably very few side effects, and is relatively inexpensive.
It is claimed that, in Antiquity, Canus, a Rhodian fiddler, used music to “make a melancholy man merry, …a lover more enamoured, a religious man more devout.” One of Alan Partridge’s favourite quips was, “If music be the food of love, then play on.”
Music is a unique phenomenon in being at the interface between emotions, memory and perception in the brain. Cognitive neuroscientists have long recognised that music presents a special conundrum. Only last week, a paper in the prestigious journal Brain was published which sheds light on why music has this unique power even in advanced Alzheimer’s disease. The authors of that particular study hypothesised that parts of the brain, which were relatively unaffected in advanced Alzheimer’s disease, had a special rôle in the appreciation of music (parts of the brain including, perhaps, the anterior cingulate and pre-supplementary motor area).
The relevance of music to residents who live with dementia is all to see in the current series of #Dementiaville, now showing on Channel 4. But in this age of ‘doing things differently’, which is often sadly used as code for cutbacks, there has been a conspicuous reluctance to give non-pharmacological approaches for dementia serious consideration. As England, and other jurisdictions, teeter at glacier pace towards integrated care (and perhaps even whole person care), it is possible a volte face will some day come with the adoption of social prescribing and its offerings.
I feel the way for this alternative view of dementia policy to get momentum is not to have tokenistic involvement of people living better with dementia on a select few number of panels. They must be given prominence in leadership rôles so that they are listened to properly in service design, provision and research. The mantra of ‘there is no alternative’ has had its day.
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.
Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.
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Ann Andrews worked as a television and theatre producer, researcher, teacher and crisis counsellor. She was diagnosed with Parkinson’s in her fifties, and went on to write the informative, practical and inspiring guide to living well with Parkinson’s; Positively Parkinson’s. We caught up with Ann to find out what she’s been up to since the publication of her book, how she’s managing her Parkinson’s symptoms now, and what she’s looking forward to in the future.
Since the publishing of Positively Parkinson’s I have travelled through most of the North Island and some of the South Island of New Zealand talking to groups of people with Parkinson’s. In doing so I have met people from all over the World and everyone has told me how important the book has been for them. It seems to have achieved what I most wanted it to do: help us all have a better understanding of Parkinson’s and to become a do-it-yourself guide to helping ourselves stay well.
I went to New York last year and am going back again this Christmas. We have a daughter there and a delightful about-to-be-two-years old grandson. While I was there I tried to promote the book which is published in the United States with the title I have Parkinson’s. What should I do? I found not many people had heard of it. However, I got to know a great group of Parkinsonian’s, members of a Brooklyn group.
A couple of years earlier a NY dance company had visited Auckland and offered dance lessons for people with Parkinson’s. They were called the Mark Morris Dance Company. One of the dancers John Heginbotham features in Positively Parkinson’s (page 126). While in NY I got in touch with John and another dancer David Leventhal, and was thrilled to be invited to a dance lesson at the home of Mark Morris Dance.
John was about to leave to join the same dance company in San Francisco and I was able to be there for his last lesson. In doing so I met the Brooklyn group. I was fortunate in being able to attend about five dance lessons with David Leventhal and student members of the dance company.
I describe the New Zealand lesson in my book (page 127) but being there at the home of the dance company was very special. As well as dance lessons I went to some movement lessons with Pamela Quinn, a dancer who has early onset Parkinson’s. She is so fit I found it difficult to keep up with her in class, though most of the other members seemed to be able to.
You can see her and some of her exercises on YouTube. If you would like to know more about the dance lessons you could get in touch with Maria Portman-Kelly who manages the Parkinson’s classes at the Mark Morris Dance School.
What these classes also achieve is to provide a meeting place for people with Parkinson’s. Attending class once or twice a week at Mark Morris or the Juliana School at the Lincoln Centre means New Yorkers can meet for coffee and a chat as well as exercise.
This year I have written a bright picture book for children and grandchildren of someone who has Parkinson’s; a child’s guide. Called Grandma’s Brain, it is illustrated with drawings of me and my grandsons, my brain, a young space traveller and space pirates. My son, a magazine publisher, is publishing the book which will be available sometime early in 2015. By then I hope to also have a website. The story is meant for children aged between 5 and 12 to read themselves or be read to. It is light, humorous, entertaining, yet informative and is colourfully illustrated. Look out for it!
In the last year I have had a few falls and my balance is not what it used to be. It has been both an eye-opener and a wake-up call. I now use a hiking stick when out and about. I find friends and family very quick to offer an arm, which is nice and I take it without demur.
More of my friends have now had the deep brain stimulation operation, one as young as 43. They seem a lot better and have been able to reduce their medicine intake. There is also a very different research programme here in Auckland which utilises the same initial brain operation, but for quite a different reason. I’ll try and explain it: To begin with… On an island in the Auckland islands group (far south of NZ into Antarctic waters) some pigs were left about two hundred years ago. Because of their isolation they have developed into a healthy virus free herd. Some of these pigs now live in a separate isolated location in New Zealand.
Pig tissue has been used successfully in medical treatments for many years, but this research is about pig cells. The programme entails removing some choroid plexus cells from deep within the pig’s brain. The choroid plexus in all brains releases a growth factor that repairs cells and makes nerves grow. Obviously we can’t transplant human choroid factor cells but we can use those from pigs, especially virus free pigs.
To inhibit the immune system from rejecting the pig cells they are placed in tiny capsules rather like Goretex which shield the cells while letting nutrients in and growth factors out. The treatment involves surgically placing the cells into the brain to encourage the nerves that have died back to regrow. A group of six people with Parkinson’s are taking part in this research. They will be assessed carefully and if there is no improvement after six months they will be offered the alternative deep brain stimulation.
I have tried to think of anything I particularly wanted to add to Positively Parkinson’s. There have been things that occurred to me, but which I can’t remember at this moment. I’m still experimenting. I have been on a course of hormone replacement which is supposed to help me remember things. I’m not sure it does, but six months on my memory does seem better. I’m sure one of the most helpful things you can do is keep working on yourself. Hold a constant dialogue with your brain. Tell it to take bigger steps, make a bigger voice and do the exercise you’ve been putting off.
One group I don’t mention in the book is the nurses working in homes for the elderly. I have talked to a number of them and found they had little understanding of Parkinson’s in the people they were caring for. They had no idea that it could be the cause of a mask-like face, the inability to smile and the lack of a voice; with the result that many of them misjudged their patients completely. To me this is dreadful. I have tried to impress on them that this kind of ignorance would be what people with Parkinson’s fear most.
Not a good ending. On a positive note I’ve just completed another Lee Silverman Voice Training Programme and found I had slipped back by not practising at home enough. I’ve tried LSVT Big from a useful YouTube programme called LSVT Big home exercise video. It’s expensive to learn the complete programme here so I add some of the video exercises to the same ones I have in the book. I have added weights to try and keep my muscle tone and then, of course, I have my new exercycle which I can ride inside when the weather is not conducive for walking.
So, think big, think positive and keep doing everything you can. Your brain will find new pathways.
Find out more about Ann’s book, read reviews or order your copy here
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Jean Demetris was a primary school teacher for 22 years. 8 years ago her husband was diagnosed with Lewy body dementia. She dealt with many aspects of the condition, the highs and lows, and engaged with the many agencies involved in her husband’s care.
The experience inspired Jean and her illustrator son Alex to create a storybook for young children; to help them understand and talk about dementia with their families. We caught up with them both for a quick chat about the inspiration behind the book and what they hope it will achieve.
Jean: There were two factors that prompted the idea for the book.
Firstly, when my husband was diagnosed with Lewy Body Dementia I needed information. I found there were plenty of books on dementia for adults and some for teenagers, but hardly any for young children.
Secondly, in my husband’s nursing home I felt there was a need for more activities and stimulation for the residents. This made me think about what could be done to encourage residents’ families and friends to participate with the residents and involve them in engaging activities.
Taking these two factors into consideration, I came up with the idea for the book that would become Grandma’s Box of Memories.
Q2. How did you Alex (Jean’s son) become involved in making the book?
Alex: A few months after Dad died Mum spoke to me about her idea for the book. I liked the sound of it, so we started work on the book’s structure and on sketching out illustrations. Soon we had put together several sample pages and before long we were very pleased to receive a commission for the full version.
I had relatively recently graduated with an MA in Illustration from Camberwell College of the Arts for which my final project had been a comic based on my family’s experiences of Dad’s dementia. Grandma’s Box of Memories represented another opportunity to work on a subject that was close to my heart.
Q3. Do you have any suggestions for people on how to adjust to the changes they are likely to encounter when a family member is affected by dementia?
Jean: My experience is of a family member with Lewy Body Dementia. Different forms of dementia have different characteristics and symptoms, so the adjustments their family and friends may need to make may be different.
Dementia should not be viewed as a stigma. Find out as much as possible about the condition from professionals and support groups. They will be able to advise you on available help and support, so use this to your advantage.
You must accept that you have to adjust to dealing with a changed person. Acknowledge the limitations that dementia can cause in people. Focus on small activities and do not expect too much of the person. Everyday tasks such as using the telephone or cooking will become difficult for people with dementia; safety around the home becomes a priority. Social services should help you to install devices such as gas, water and personal alarms. You can also be creative in helping the person to remain independent using small measures such as sticky notes reminding them to lock doors, close windows, or turn off taps.
If the person with dementia is alone at home it is also helpful to arrange for friends and neighbours to drop by and check they are safe.
Personal hygiene may become problematic as reluctance to bathe or change clothes can take hold, and you may need to help with these tasks. Initially this may cause embarrassment but it can be overcome.
Patience and understanding will win out over confrontation in dealing with situations, and a sense of humour is essential.
Should your family member need residential care, try to help make it a home from home. Enjoy going there and participate in events such as birthday celebrations. Engage with staff and other residents. You will encounter people you would not normally meet, which can be rewarding.
Don’t be upset when acquaintances find it difficult to engage with the person with dementia. Some people will naturally find the situation hard to deal with.
Your lifestyle will change, sometimes quite dramatically. Caring for a person with dementia can be hard work emotionally and physically, but don’t be hard on yourself. Seek help – it’s there, and find time for you. Occasional treats are a must.
Jean: Grandma’s Box of Memories is meant to be educational and entertaining; I hope readers will enjoy the story, illustrations and characters.
The book provides children with basic but helpful information about dementia, and invites readers to suggest their own ideas for items to go in a memory box. It might also encourage children to be creative and come up with ideas of their own to support people with dementia.
Hopefully, it will help children understand that they can be part of the caring process and share their feelings and ideas with family members.
Q5. What should parents remember when they are explaining dementia to younger children?
Jean: Children will be aware that something is wrong but will normally accept the diagnosis of dementia given the appropriate support. It is natural for an adult to want to protect the child yet is important to explain what is going on in a calm and clear way. A child may experience a range of emotions, such as sadness, anxiety, anger and confusion, and will need reassurance that adults are there for them and can offer them time for discussion, both talking and listening and encouragement to ask questions.
It is important that the child understands that dementia cannot be cured but there are ways to help the person feel loved and wanted.
Q6. How can children be involved in the care of family members?
Jean: Most obviously, children can pay frequent visits to the person with dementia. During these visits they can look at books and photos with the person, chat with them, listen to music and sing and dance, draw pictures, or do simple jigsaws. They can also share small treats such as sweets and biscuits and help to peel and share pieces of fruit.
Outings to places like local parks are another way that children can be involved in caring for someone with dementia. Sharing simple outdoor activities like playing catch or feeding ducks is fun for everybody.
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