Could music projects cut the cost of dementia care?

Sheer embarrassment was dementia care worker Lynda Kelly’s overwhelming emotion the first time she sat in on a  orchestra music therapy session at the residential home where she works; but the lasting change she saw in the residents in response to the musicians was so great that she is now running weekly improvisation sessions at the home.

Kelly, the activities coordinator for Acacia Lodge – a 60-bed residential home in New Moston, Manchester – reports seeing a mute female resident with advanced Alzheimer’s sing Swing Low, Sweet Chariot at top volume with all the words in one of the first Camerata sessions. Two other former non-speakers now communicate with staff as though they had never stopped and many more display greater confidence, increased activity levels and more cooperation with their carers.

“The first music session I went to, I did not know where to put myself with embarrassment – I was not used to seeing people sing and express themselves like that,” says Kelly, who has since then been involved in three music and dementia projects with the chamber orchestra over the past three years, including a 10-week course for Acacia Lodge residents. “But the impact has been amazing and I realised within two weeks that music was getting to them in a completely different way.”

Manchester Camerata orchestra’s Music in Mind (MIM) projects, which involved 7,200 people in care homes and community projects acrossGreater Manchester last year, have had such dramatic effects on participants that academics at Manchester and Lancaster universities are backing a research student to create the world’s first in-the-moment, multi-sensory assessment tool to quantify that effect.

Manchester Camerata’s head of educational outreach, Nick Ponsillo, says: “This is all about helping people with dementia to communicate and to feel part of the community, but we need to know that we are really getting to the guts of a patient’s experience.”

The Camerata – whose reputation with audiences is built on concerts of Mozart and Beethoven in venues such as the Bridgewater Hall – now hosts Manchester University PhD student psychologist Robyn Dowlen to carry out research in collaboration with Lancaster University. She is attempting to measure the effect of music on people who may not be able to communicate it in words.

This is about coming up with the proof that there is more to music in a dementia context than just entertainment. According to the Alzheimer’s Society, there will be 1 million people with dementia in the UK by 2025 and one in six people over the age of 80 currently have it. Alzheimer’s is a massive health and social care challenge to which management approaches are needed in a cash-strapped world.

Camerata’s projects – led by a professional music therapist and specially-trained musicians from the orchestra – involve working directly with patients with degenerative brain disease and their carers. It is about encouraging them to sing, play instruments and create music – and even to perform in public, in sessions before Camerata concerts.

Dowlen’s supervisor, Prof John Keady, who leads the dementia and ageing research team at Manchester University, is excited about the MIM projects, which he sees as confirming his view of dementia as a loss of self and social identity, rather than the more common view of it as a loss of creative and cognitive skills.

He hopes that Dowlen will be able to produce a means of measuring an individual’s experience of connection, so that the circumstances can be reproduced when people engage in other activities.

Evaluation of MIM projects in Rochdale and Tameside by New Economy paints a consistent picture of better communication, happier and more cooperative patients, and even suggests that music participation may lead to a reduction in the amount of NHS treatments and anti-psychotic medication required. Numbers are small, but it is an area researchers want to investigate.

Keady is even asking himself whether the right kind of music projects actually cut the cost of dementia care.

Ponsillo has noticed a change in attitude from health and social care sectors since work on projects began in 2010, from lack of interest to a desire for collaboration. Rochdale has had projects in two care homes and two community centres last year, and Tameside Public Health is currently funding 30-week projects in four care homes – plus music training for carers to help them continue the work themselves – despite enduring budget cuts. Four other projects are also ready to start next month in central and north Manchester.

Angela Wild, programme officer for Tameside Public Health and dementia champion, is clear: “This work is leaving a lasting impression. The money Tameside is spending on 30 sessions is money well spent. Everyone should be doing it.”

Ponsillo has just returned from Japan, where he was invited to address cultural organisations keen to learn from the Camerata’s experience about how to set up music schemes for people with dementia, given the ever-growing elderly population.

Creative music projects can clearly benefit those with dementia, but other performing arts are making an impact too. West Yorkshire Playhouse has won awards for its work in the field with drama, and Liverpool-based Indian traditional dancer Bisakha Sarker has witnessed powerful effects with movement.

Given David Cameron’s launch of the prime minister’s challenge on dementia 2020, the public health minister, Jane Ellison, is keeping an eye on what is happening in Manchester. She said: “For many people with dementia, music and other arts-based activities can make a real difference to their sense of wellbeing and quality of life. We are working to create more dementia-friendly communities. Manchester Camerata’s work is great example of what can be done to help people live well with dementia.”

Life stories in dementia care: we all have a story and cannot be understood without it

In Jonas Jonasson’s book The Hundred-Year-Old Man Who Climbed Out of the Window and Disappeared, the protagonist faces scepticism when he recounts the tale of his daring escape across the Himalayas. “You crossed the Himalayas? At a hundred?” exclaims the prosecutor. “No, don’t be silly,” responds Allan. “You see, Mr Prosecutor, I haven’t always been a hundred years old. No, that’s recent.” 

Jonasson uses the life story of the 100-year-old man as a vehicle to tell a story about 20th-century history, but I read this novel while immersed in a research project looking at the use of life story work in dementia care. For me the message was clear: we all have a story, and no one can be understood by how they appear today out of the context of that story.

Life story work typically involves helping people to make a record of some aspects of their life, most often in a book or template, although more creative approaches do exist, including the use of IT and stop frame animation. Increasingly, life story work is being promoted as an important tool for enhancing person-centred dementia care. However, when it comes to specifics, there is little agreement.

A care home may ask a resident’s family to write a summary of their life using a list of prompts, while a community team works with an individual to make a collage about their life, and both could call it life story work. Perhaps the most important distinction is that when some people talk about life story work they mean an activity that is led by the person with dementia, to celebrate and preserve memories. Others mean a process led by professionals with the aim of aiding communication and increasing staff understanding.

Not everyone wants to be reminded of their past, and different people may come up with alternative accounts of the same person’s history. Life story work has many complexities, and when you add dementia into the mix things can get tricky. However, enthusiasm for life story work is high and claims for its positive effects are increasing.

To explore these claims, the Social Policy Research Unit at the University of York conducted research into the potential costs and outcomes of life story work in dementia care. This is not easy when there is such variation in practice. We collected information from six care homes that were all introducing life story work for the first time. Even with the same training, each care home did it differently.

When we asked people with dementia, family carers and professionals about good practice, the first thing that struck us was that, despite the hype, not everyone wants to make a life story. They may also have different views from staff about what their life story book/film/collage is for. It was felt that beginning the process early could enable people with dementia to take a more active role and communicate how they would like their story to be used. If staff were involved, one suggestion was that they could try making a life story document of their own to see how this feels and what issues arise.

Improving the quality of care and making it more person-centred often has associated costs. The greatest cost to the care homes introducing life story work was staff training, ranging from £950 to almost £1,600. After this initial outlay, however, the average cost of actually creating and using a life story book was relatively small: we estimated around £37 per resident over 16 weeks. Of course, costs will vary with different approaches.

The most significant effect we detected was an improvement in staff attitudes towards people with dementia in care home that introduced life story work, together with a hint that residents themselves felt better. However, the work was intentionally exploratory and to understand the full implications we recommend reading the final report, which will be published later this year and will be available through the SPRU website.

The key message from the people we spoke to was that whether life story work enhances dementia care depends to a large extent on what the people involved want to get out of it. If it’s intended to improve understanding in care settings, staff need the time and opportunity to use the information. If it’s about celebrating life and preserving identity, people with dementia need support and opportunities to do this their own way.

This article presents independent research funded by the National Institute for Health Research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Vascular Dementia – Helpful questions and answers

What is Vascular Dementia?

Vascular Dementia (VD) is a condition caused by a lack of sufficient oxygen and nutrients to the brain, causing the cells within the brain to eventually die. The blood vessels that carry blood to the brain become diseased – they are often weakened and leak, or can become blocked, decreasing their effectiveness in delivering vital oxygen and nutrients to the brain. Of the various identifiable types of dementia, VD is the second most-common form, with approximately 150,000 sufferers in the UK.

Here is a useful video that providers a brief outline of what Vascular Dementia is.

How is it caused?

There are two primary reasons why the condition may develop.

Cause 1 – The most common cause is the degeneration of tiny blood vessels deep within the brain, this is called Subcortical Dementia.  The tiny bloody vessels can thicken, which in turn reduces the blood supply to those cells, causing them to degenerate and eventually die. The nerve fibres around the affected blood vessels are also harmed, reducing their effectiveness. The disease of the tiny bloody vessels can also affect other areas of the brain, including the base, if blood vessels are blocked here it could cause small infarcts – also known as an ischaemic stroke.

Cause 2 – The second most common cause of VD is following a stroke. Strokes occur when the blood supply to the brain is suddenly cut-off, this can be as a result of a blood clot (an ischaemic stroke) or less commonly, where a blood vessel ruptures and bleeds into the brain (a haemorrhagic stroke). Around 1 in 5 people who suffer a stroke will develop dementia on top of the side effects of the stroke itself. Most people who have suffered a stroke will have another and therefore the risk of developing dementia increases with each stroke event as more of the brain becomes damaged.

How can it affect someone?

The symptoms of VD can vary from person to person, often dictated by the root cause of the dementia, whether it be as a result of vascular disease, or following a stroke. The speed in which the symptoms can take hold can also vary, the damage following a stroke is often instantaneous, whereas the effects of vascular disease can develop over time.

Early symptoms and effects can include:

  • Problems concentrating on tasks – this could be shown in activities such as planning, making decisions or problem solving.   They may also struggle to follow instructions, and their thought process may be slower.
  • Mild memory loss.
  • Problems with articulating what they want to say – their speech may become less fluent as they concentrate on finding the words.
  • Easily frustrated – this is often a result of the issues highlighted above.
  • Depression and sudden changes in mood – the depression is often as a result of the sufferer becoming aware of the cognitive effects (listed above).
  • Weak bladder – this is associated with subcortical VD sufferers, and can be accompanied by a weakness on one particular side of their body.
  • Dizziness or tremors.

As the disease progresses (stroke-related VD often will become worse following each new stroke episode; whereas subcortical VD will worsen gradually), long term symptoms and effects include:

  • Severe confusion and memory loss – day to day tasks become harder and sufferers are likely to need support on a daily basis.
  • Problems with communication and comprehension.
  • Changes to their personality and behaviour – they can become aggressive, irritable and easily agitated.
  • Suffer delusions and hallucinations.

What treatments are available?

Sadly the brain damage caused by VD cannot be treated to stop the degeneration, nor can it be reversed. However, with careful and managed support an individual with VD can continue to live well.

Caring for a loved one with VD can be hard, but these simple tips can help you support your loved one and give them some much-needed structure when they need it:

  • Establish a routine – this will help them feel less agitated.
  • Keep them occupied – it is important to help keep their mind and body active (where possible), whether it be a short walk, social activities or something as simple as tending to plants. This helps add structure to their day to day lives, as well as providing a sense of purpose.
  • Don’t be afraid to communicate with your loved one – though they may struggle to comprehend you, it is important they do not feel isolated and a smile or arm around the shoulder can help you both feel comfortable.

As well as taking on the care yourself, there are many different types of external support available, and family and friends of those with the disease are encouraged to explore these options. UK Care Guide was founded to offer honest and reliable support for anyone needing care for themselves or a relative – and our website contains a wealth of information about ongoing care, the costs of care (including our handy Care Calculator) and your options for care for your loved one.

Thanks to the UK Care Guide for their recent Blog Article.