Penwortham man living with dementia releases song for Alzheimer’s Society
69-year-old John Holt who is living with dementia has been inspired to write a song about his experiences of the condition. The song ‘The Secret D’ has been released on iTunes with all proceeds going to Alzheimer’s Society. John, who lives in Penwortham, attends Alzheimer’s Society’s Singing for the Brain in Penwortham, and is also a member of the Skylarks Community Choir. As a former musician in a brass band, John penned the lyrics and contacted ‘The Songwriting Charity’, set up by Nathan Timothy, who agreed to write the music and produce it. John explains: “I wanted to write something that explains what happens when you get dementia and how if you keep doing activities it can genuinely help you. I hope the lyrics communicate how I feel I live with the illness and emphasise that there are many things we can still do and learn. We don’t have to just sit back and silently accept the inevitable. ‘I try to be as active as possible and organise lots of new things and I really believe that helps me to deal with this condition. I wanted to share that message with other people with dementia, and, at the same time, raise funds for Alzheimer’s Society, as I feel the charity has really helped me. ‘I feel my confidence has grown since attending these singing groups. I do a solo every week, and prior to getting dementia, I would never have stood up and sung. Now I have written a song and sold 200 copies of the CD already.” Nathan Timothy from The Songwriting Charity based in Kent said: “John contacted me after reading online about my work and I was honoured when he asked me if I could help him with this fantastic and unique project. My own father has been diagnosed with dementia so I am fully aware of the impact it has on the lives of so many people.” The lead vocals are sung by 22 year-old Lewis Hampson who studies music at UCLan. Lewis recently lost his grandfather to dementia and so was keen to be involved as it had a personal significance for him. Lewis Hampson says: “I met John at a singing for the brain group having been persuaded to go along by mum who works for Alzheimer’s Society. Having lost my grandad last year, who lived with dementia, I felt humbled when I was asked to sing lead vocals on the song John had wrote. It made me think I was giving something back to the society who had supported him and my nan. I am in my final year at UClan studying Musical Theatre so singing is a great passion of mine. Being part of this project was my absolute pleasure.” A small group from Skylarks community choir (including John) were also involved in singing on the recording. Jane Swarbrick, who leads Alzheimer’s Society’s Singing for the Brain group and runs Skylark Community choir said: “It’s amazing what John has achieved by writing this song and selling 200 copies of the CD already. I think it’s truly inspirational that so many people have come together to support and help make this happen for John. ‘I think John echoes an important message that people can still live well with dementia and keeping active and having interests helps many people with dementia. ‘Music is also so important for people with dementia. Even when many memories are hard to retrieve, music can sometimes still be recalled – if only for a short while. Singing for the Brain sessions help people living with dementia communicate, improving their mood and leaving them feeling good about themselves.’ ‘Dementia devastates lives, but dementia won’t win. Until the day we find a cure we will be here for anyone affected by dementia, where they are, whatever they’re going through. We need more people like John and those who have supported him to join us now and unite against dementia.” If you want to download the song please go to https://itunes.apple.com/gb/album/the-secret-d-single/1455634899 John is also writing a book called ‘From Birth to Dementia’ about his life. From running your local 5K to trekking Mount Kilimanjaro and cycling from London to Paris to parachuting, Alzheimer’s Society has a fantastic range of events both in the UK and abroad. Unite with us now at www.alzheimers.org.uk
Music study investigates communication in people living with dementia
Chelsea Court Place, a residential home for individuals living with dementia, is working with the University of Roehampton in a research project entitled Beyond Words, which uses ‘micro-songs’ to recapture and sustain functional language in people with advanced dementia. The study aims to investigate the power of music, enabling people living with dementia to retain their speech and help communicate their wishes and needs for a longer period than would be normally be the case in the natural deterioration caused by the disease. Researchers, Professor Adam Ockelford, Dr Fiona Costa, Catlin Shanghnessya PhD student and ‘savant’ pianist Derek Paravacini are leading this innovative project with residents from Chelsea Court Place. The weekly, 45 minute sessions include a repertoire of familiar songs (requested by the audience) and proceed into a series of micro- songs; short rhythmic melodies associated with key functional language. Such micro-songs have been successfully used with children and young people with complex needs to scaffold or substitute language but no research has been conducted to understand the extent to which this happens. The project launched in October 2017 and is proving to be extremely popular with the residents. Key finding from this period through to July 2018 have so far included: The key findings were as follows: • Almost all the participants were able to learn the new songs and sing them following demonstrations by the research team. • The songs were recalled initially over a period of a week, a month, and then three months (with no exposure between times). • The songs were motivating, providing participants with information that could be interesting and helpful: for example, introducing the name of the person sitting next to them (and in some cases their own name); the day of the week. Other songs encouraged movement and reinforced laterality. Some afforded the opportunity to express how they were feeling, which engendered some tactile responses. Some allowed participants to indicate their wants and needs. For example: • Contrary to the initial concerns of the research team, they were not interpreted as patronising, but engaging and fun. It appeared that, once they were familiar, the participants did not distinguish between the songs they had known for many years and the new ones. Background There are increasing numbers of people with dementia in the UK. Current estimates by the Alzheimer’s Society suggest that there are as many as 850,000. This number is expected to rise to over one million by 2025 and to two million by 2051. A cure for dementia is still a long way off. It is therefore imperative to find ways of improving the quality of life of those with the disease. To this end, several health bodies have recommended the development of non-pharmacological approaches to care. One such approach is the use of music. Various research studies have shown that participatory music programmes can regulate symptoms of anxiety and depression, reduce agitation and aggression, facilitate social interaction, retain memory and improve general wellbeing. One of the most debilitating symptoms of dementia is a decline in the capacity to speak. This leads to social isolation, a loss of a sense of time and place, and a reduced capacity to make choices. However, it appears that many musical abilities and memories remain intact during the course of the disease. This raises the possibility that music can be used to rekindle and sustain verbal communication – an idea that was the main focus of the ‘MIND: Phase 2’ study. For 10 months, the research team led weekly music sessions with two groups of people with moderate to severe dementia, all in residential care. Each session was preceded with 45 minutes of singing, using preferred music from the participants’ teens and twenties. This was in itself a positive experience. Almost all joined in the singing and were invariably able to recall at least some of the lyrics, thereby accessing language that was normally unavailable to them. Following the large-group session, further, smaller groups were engaged in singing for a further 45 minutes, using, within the preferred pieces, specially composed ‘micro-songs’. These set everyday words and phrases to simple tunes as shown below. Conclusion and next steps These songs, each very simple in content, were relevant to the participant’s lives, and a way for them to navigate their social environments. Taking part raised their confidence in their ability to sing and in their memory, often accessing language that was no longer part of their day-to-day vocabulary. The wider effects, such as improved social interaction with other residents and increased self-awareness were, even if short-term, of benefit to them. It is hoped to initiate a further project that will embed the materials in the daily lives of participants, enabling them to express their feelings and communicate their wishes and needs for a longer period than would normally be the case in the course of the disease. Professor Adam Ockelford comments: “Beyond Words hopes to see successful results showing an improvement in sustained use of language for participants and ultimately offering them an improved quality of life. Evidence has so far suggested that music has a powerful role to play in communication with individuals who have complex needs and we are very proud to be working with the Chelsea Court Place team and residents to investigate and hopefully prove the theory.” Christine Valentine-Bunce, Head of Commissioning and Operations at Chelsea Court Place adds: “Music is very powerful and evocative and the sheer joy experienced by our residents in the Beyond Words sessions is remarkable. We have been very impressed with the way in which our residents have embraced the weekly sessions and are very excited about seeing the results.” About Derek Paravacini Derek Paravacini is a world-renowned ‘savant’ pianist who is working with the University of Roehampton on a ground-breaking research project “Beyond Words” at Chelsea Court Place. Derek first shot to fame when he was just nine years old, playing jazz with the Royal Philharmonic Pops Orchestra at the Barbican Centre in London. Numerous television
Music all in a day’s work at Balhousie Care Group
It’s not a bad day at work when you spend a large part of it listening to your favourite song tracks. But that’s just how Balhousie Care Group employees spent a day recently when they learned the benefits of music to people living with dementia. Sixteen care home staff from across the award-winning group gathered in Balhousie Monkbarns in Arbroath – one of Balhousie Care’s 25 homes across Scotland – to receive their latest training in the popular Playlist for Life, a programme launched by broadcaster Sally Magnusson for use in care homes, hospitals and the community. Sally founded Playlist for Life after seeing the positive effect music had for her mother, who was living with dementia. For Yvonne Manson, Balhousie Care Group’s dementia consultant, the effects of music on people living with dementia are “powerful”. Yvonne, current RCNi Leadership Award Winner and a UK leader in dementia in care homes, said: “I have seen several people with dementia with word finding and communication difficulties singing full songs, much to the shock of those around them. I have also seen people with dementia who are restless and walk sometimes at a great pace, getting comfort from the songs and sitting down to listen to them or slowing their pace as they walk. She added: “Family members have reported that their wedding song came on and the person with dementia reached out for their hand. There are too many examples to list but safe to say the effect of music on these residents is powerful, just as it is on all of us.” At Balhousie, Playlist for Life and personalised music are used in lounge areas and played individually to residents, using iPods and mp3 players. The playlists are created with the help of residents, family members, friends and staff and the programme is put in place by ‘dementia ambassadors’ – dedicated staff members who are trained to make sure Balhousie Care’s dementia strategies are delivered in each care home. When Paula Balfour, activities coordinator at Balhousie St Ronans in Dundee, used music therapy with resident Patsy Anderson recently, the results were immediate. Said Paula: “We played some of her favourite Elvis songs and in a matter of minutes Patsy, who has dementia, went from being tearful and anxious to engaged, talkative, playful and happy. She even joined us for a boogie around the office!” Yvonne Manson said: “Balhousie Care Group staff have taken the playlist idea and run with it. That includes all the people in the care home, from carers to domestic staff and volunteers. We’ve even had help from schoolchildren helping put together the playlists. I can’t say I’m surprised because music puts a smile on everybody’s face.” Paula Bain, training officer at Playlist for Life, said: “We’re delighted to see that Balhousie Care Group are having such great results using Playlist for Life with their residents. Introducing playlists can improve the experience of care for residents, families and care workers alike, and it’s clear that Balhousie are doing great work rolling it out across their homes.” To find out more about Balhousie Care Group visit www.balhousiecare.co.uk More on Playlist for Life is at www.playlistforlife.org.uk
