Unlocking Patients with Dementia
Thursday, 15 March 2018
Mr Andy Lowndes, Deputy Chair and The Music Director of Playlist for Life. Clinical Lecturer in nursing at Glasgow Caledonian University.
Andy Lowndes, a former psychiatric nurse and a recently retired academic from Glasgow Caledonian University, is one of the founders and Deputy Chair of the music and dementia charity, Playlist for Life. which helps people living with dementia and their families to track down the music that has formed the soundtrack to their lives.
Note on Meeting of 15th March
The President welcomed the company to the meeting which had had to be cancelled on the original date due to the weather which saw the speaker snow-bound in Glasgow.
The death was announced of Dr Valerie Farr, a member for more than 30 years, who had worked in Paediatrics and Obstetrics in Aberdeen and had been a pioneer in the clinical use of obstetric ultrasound. Dr Farr had died at the age of 87 in Woodend Hospital on 18th January.
As announced by email earlier in the day, the proposed Spring Dinner and Ceilidh at the RNUC has had to be cancelled due to lack of interest.
The Famous for Five Minutes charity event is on Saturday 12th May and this year’s producer, Dr Stephen Lynch, is seeking the help of members in recruiting performers.
The President then introduced the main business of the evening, a talk by Mr Andy Lowndes, Deputy Chair and ‘The Music Detective’ of Playlist for Life. Mr Lowndes had had a career in psychiatric nursing, substantially in an academic post in Glasgow Caledonian University from which he had recently retired. He is a co-founder of the Playlist for Life charity and had come to talk about this work under the title ‘Unlocking Patients with Dementia’.
The speaker began by thanking the Society for the invitation to talk, explaining that his organisation is on a 5 year mission to spread awareness of the potential value of music in management of dementia throughout Scotland. Having reminded us that around 93k people are living with a diagnosis of dementia in Scotland, he said that he would not say much about the scientific basis of this area of work, but referred the audience to a new (Jan 2018) Utley Foundation report (65pp) from the Commission on Dementia and Music by Sally Bowell and Sally Marie Bamford entitled ‘What Would Life Be – Without a Song or a Dance, What Are We?’
Central to this work is the phenomenon that response to music is a thing that dementia cannot apparently destroy. On reflection, Mr Lowndes described his own initial awareness of the benefits of music in dementia when he recalled his early observations of its effect on patients he looked after as a student nurse in Lenzie. He was far from alone in failing to realise the potential importance of this until much later. He went on to describe the story of Mamie Baird Magnusson, mother of BBC Scotland news presenter and writer Sally Magnusson, and herself a writer and journalist. Mamie Baird’s battle with dementia, and her daughters’ struggle to care for her, have been described in some detail in Sally’s 2014 book ‘Where memories go: why dementia changes everything”.
When Sally Magnusson sought a meeting with Mr Lowndes, then an academic psychiatric nurse, she explained that while Alzheimer’s disease effectively stopped her mother using verbal communication, singing and sharing of familiar songs appeared to be of great value in relieving her anxieties and facilitating co-operation when bathing, for example. The question was whether this favourable response to music was just luck i.e. something sporadic, or was it perhaps a more general phenomenon that could be used widely. This initial question and meeting led to the establishment of developing the idea of a large and growing project centred in personally meaningful music.
Mr Lowndes explained that in attempting to identify and establish an individual’s ‘Playlist of Life’ (PFL), it was necessary to develop the skills of a so-called ‘music detective’ asking the right kind of questions to try to learn about a person and their story behind why certain pieces of music were particularly meaningful. He paused to invite the audience to engage in an illustrative experiment whereby they were asked to think of a song that may be on their personal playlist – and then tell their neighbour what it was and why it meant something to them. Three volunteers were then invited to share their respective choices and associated feelings and memories, with the audience. The eclectic mix that resulted included Louis Armstrong’s recording of ‘It’s a Wonderful World’, Perry Como’s ‘Without a Song’ and Meatloaf’s ‘Bat out of Hell’. In playing segments of each chosen track, Mr Lowndes incidentally also demonstrated the wonders of modern music technology which allow the very track in question to be called up on a small device within seconds. The point was also made that finding the specific recording or version in mind was of considerable importance.
In developing the description of the ‘personal playlist’, the speaker said that the declaration by each of our volunteers of a song and what it meant to them increased his knowledge of the individuals in question. By the time someone had chosen say 20 songs, each with its attendant personal back story, that would have defined a great deal about their individual identity; he contrasted the depth of personal history gained thus with the relatively bland achievements of the standard ‘Who am I?’ forms in common usage. The ‘flashback feeling’ engendered by hearing a familiar, favourite song with a story is powerful and even a vague memory of the attendant sentiments and emotions can be comforting to the dementia sufferer. This is central to the potential of exposure to such music as a person-centred intervention. There is established evidence that music is ‘neurologically special’ in that it has been shown to functionally affect many areas of the brain. The establishment of an individual’s so-called PFL and its storage on an iPod or MP3 player makes the unique and important selection of music readily available for therapeutic purposes at any time of day or night.
Margaret Murphy was the first of two illustrative cases shared, a resident with dementia in a care home in Ayr who, when referred to the project, sat staring at nothing in particular, had lost the ability to make any meaningful connection with anyone, was barely eating and needed full care throughout 24 hours. On discussion it transpired that she had at one time been a professional pianist and what is more, when she had entered the care home, her family had donated her piano to the home in the hope that someone may be able to visit and play for the residents one day. A video clip was shown of what happened when she was sat down at her own piano in the home; she immediately started playing (Happy Days are here Again) and within relatively few seconds was looking around for the approbation of fellow residents, and to see if her music was having any effect on them. Soon she was swaying at the keyboard in time to the music and, having resumed the long-dormant role of being an entertainer, began smiling. For several months thereafter, this lady was able to play the piano when sat down at it to the great benefit of her general well-being.
Ken Bettis was the next case, an elderly chap living at home with his dementia. He had a lot of visuo-spatial problems meaning he had considerable fear of stepping and walking such that his family members had to walk in front of him and literally pull him about to move him through the house. A video clip was shown of what happened when ‘Let’s Twist Again’ was played while his daughter-in-law attempted to dance with him. He was immediately moving in time with the music and soon resuming long-forgotten (and presumed lost) dance moves and, indeed, whooping with delight while he did so. The improvement soon reverted when the music stopped but even permitting him to engage in a happy, if brief, spell of exercise and free movement was astonishing and welcome.
The perceived benefits for dementia sufferers of such re-engagement with music included better communication/connection, improved nutritional intake, less incontinence, reduced medication requirement, improved mood/happiness/calmness and reduced agitation/anxiety/falls/injuries.
In taking forward this initiative, it was explained that the PFL project offers training for people working in care/nursing homes who are generally very receptive to the idea of some new and visibly effective way that they can engage more constructively with clients. The story was told of a particularly anxious lady with dementia who was having sedation twice daily with lorazepam for anxiety attacks. When she was selected as a case study by a carer learning about the Playlist programme, the change in her was such that she required no lorazepam at all during the 3 week observation period after her ‘music therapy’ had commenced.
The next tale concerned one of the youngest patients who at 49 years of age was living in a locked ward with fronto-temporal dementia that had resulted in a behaviourally destructive demeanour. He had done little other than grunt as communication for the previous year. Instead of using the customary headphones (customary as they exclude background noises for the intended listener, and prevent the music becoming an additional intrusive noise for those around), a system with a speaker safely out of reach on top of a wardrobe had to be improvised. At a follow-up visit around 2 weeks after he had started listening to music, staff reported that he had been singing along to the songs. His father was particularly moved by the change; he had not heard his son’s voice for the past year!
Establishment of individual playlists of favourite songs/music and artists can be assisted by the use of the ‘diary for music’ tool on the PFL website; once again the importance of the related story with each track for the individual concerned also must be gathered. The PFL project, which employs 7 staff members, has a limited, 5-year duration in which to increase awareness of the potential for using music with dementia sufferers and has plans therefore to inform a wide range of bodies e.g churches, libraries and schools to produce individuals within each organisation who can act as an information source. Online training is available for those interested in learning more and there has generally been a very positive response in terms of engagement from e.g. radiographers, ambulance staff, elderly mental health teams, etc. Uptake within NHS Fife was illustrated in the form of a poster presentation made at a very recent Dementia Champions meeting where a team from a hospital Emergency Department were displaying information on how they are using suitable music to calm anxious or distressed clients thus facilitating their assessment and management.
A series of current collaborative research projects on the PFL theme were also described. A Marie Curie project using music in life-limiting conditions is under way in Glasgow; Glasgow Caledonian University has a PhD student looking at PFL as an element in a ‘culture of care’ project; work with the University of Warwick is assessing potential impact of music on Quality of Life; University of West of Scotland are assessing the use of PFL in learning disabilities plus dementia; work with the Centre for Dementia Prevention in Edinburgh is looking at how GPs are using PFL to support nursing homes; advanced brain scanning techniques are being used in Edinburgh University to assess the brain’s reaction to PFL.
Mr Lowndes also highlighted the importance of the PFL outcomes for family and carers of those living with dementia. It helps to maintain, and indeed, to recover relationships as well as promoting an ability to go on sharing interactions. It reduces stress for relatives and offers respite for carers, perhaps by permitting a more constructive focus ino time spent together, including during visits to care homes and such.
Towards the end of the presentation, the speaker showed a 6 minute video designed to give an overview of the potential of the PFL project. It told the story of Harry O’Donnell whose dementia had led to his living in a care home where he was frail, no longer eating, barely moving and had not been attempting any verbal communication for 6 months. His wife, Margaret, attended daily… and became distressed daily by what she saw and felt. With the help of a music detective, Margaret identified 27 important tracks for Harry’s PFL. While Harry’s condition had seemed beyond hope, within 3 days there were subtle, visible signs that he was paying attention to the music. Three days later, he started ‘conducting’ the music with hand movements and a week after that he began vocalising for the first time in months; not long afterwards, he was joining in, singing along to some of the tracks. The film recorded the reflections of those involved in the trial of PFL, and in Harry’s care with all being impressed at how he had become more responsive and less distressed. After Harry’s death some 2 years later, Mr Lowndes had an opportunity to reflect on Harry’s case with Margaret who confirmed the success of PFL for her husband, explaining how it had changed her ability to care for her husband, to enjoy his company and has “helped her to fall in love with him again.”
Mr Lowndes concluded his presentation by encouraging everyone to waste no time in starting work on their own playlist for life – as it is much easier to choose your own meaningful music than to wait until you are no longer able to do so and someone else has to guess on your behalf.
There followed a question and answer session covering topics including the size of a playlist – as long as one likes provided each track has its back story recorded; use of the technique in other conditions e.g. head injury – could well be useful but dementia is the focus of the PFL charity; use of music with groups – definitely useful but much less specific to needs and memories of individual and beware ‘red flag’ tracks that have particularly bad memories or associations for some people; what about those with no recorded interest in music? – there is usually a way to engage as in the example of the man who, after all, knew all of the songs from the Pittodrie terracing; concerns about playing sad music – not all bad since the opportunity to share and remember emotion may be useful and welcome even if not necessarily happy; importance of engagement in PFL by those with the patient when the music is being played – always better if accompanying individual, whether family or care staff, knows the stories behind the tunes; difficulties incorporating this into staff-stretched care home routines – not necessarily only for the staff to implement, but there is payback when PFL reduces the time-consuming aspects of caring for agitated and distressed clients.
The President gave a vote of thanks and reminded the company that next month’s meeting has been arranged, unusually, for the 2nd Thursday (12th) to accommodate the speaker’s availability.