Music & Dementia #1 - on being human, and one's value
Creating music with people with dementia gives me beautiful chances to celebrate and enact a Biblical view of what it is to be human and how we are to love others, treating people with dignity because of their inherent God-given value. This sounds lovely, but as anyone who has walked alongside someone with dementia knows, it also throws up difficult questions as we are faced with the nagging questions ‘does it make a difference?’, ‘is my loved one still really there?’ and ‘where is God in this person’s suffering?’ as well as lost, scary, sad and perplexing moments.
Here are a few thoughts about working in this field as a Christian drawn from my own practice and conversations with current music students and young professionals.
Music is made by real humans with real bodies, a fact that can be ignored when we hear a perfectly-edited recording but not when we see a frail person struggling to hold a tambourine. Physical bodies matter as Jesus’s incarnation and real physical resurrection affirm. Just as we have an incarnate saviour, so our approach to humans and their music making is incarnate. If we hold a gnostic view of music that separates the sound from the body we will fail to see the true value of the music that is created in dementia-friendly music workshops. The value is not only in the sound we create, but also in the costly, embodied, daring acts of making it.
For example, if you were to walk into a care home near Gloucester just before Christmas you might have heard some tuned handbells and a flute sounding together in an unpredictable way. If you followed that sound into the lounge you would have seen the struggle of a lady who has had a stroke conducting a class of primary school children and me by moving a floaty scarf – a difficult, embodied, incarnate action that gave poignance and beauty to the music that the sound alone could not have held.
An incarnate view of music-making also forces us to notice the pain and the brokenness that often afflicts our bodies as they age, but not without hope. Moving limbs to conduct children, playing a tambourine, singing, breathing deeply, toe-tapping and clapping all play a part in keeping aging bodies in shape. They can exercise little-used muscles and improve fine motor skills which can help people with dementia with other tasks such as dressing and eating. However, as I have been working with some of the same nursing-home residents for a few years now, I see these activities getting harder and harder for some of them. The physical benefits that my sessions afford are good, but they slow rather than stop physical decline and I would be hard-hearted not to grieve to see pain and struggle increase.
As Christians, however, we know that pain is not necessarily the end - grieving at our bodies’ decay can also point us forward to the resurrection. I love seeing someone doing the Hokey Cokey for the first time in decades when I play the tune for them on my melodeon, but at best this is just a foretaste of the new bodies that Jesus promises his followers! Here is how the Apostle Paul describes it:
It is the same way with the resurrection of the dead. Our earthly bodies are planted in the ground when we die, but they will be raised to live forever. Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength.”
Humans are made for community, relationships and communication because we are made in the image of the Triune God – Father, Son and Holy Spirit. We are made for a relationship with God and for relationship with one another, yet many people with dementia struggle with social isolation either because of physical barriers, confusion in social situations, or difficulties with verbal communication. Making music can strengthen a sense of community and help relationship formation; even sharing a musical experience such as synchronized clapping can elicit a feeling of ‘being together’ that doesn’t necessarily require verbal communication and can allow people with advanced dementia to remain interactive.
There are loads of musical activities that we can use to celebrate the interpersonal aspect of being human. In my intergenerational music workshops, I particularly use name songs, passing props, and conversation tasks which generate instant lyrics. I also encourage people to take turns being leaders and followers, often using floaty scarfs as conducting tools, as I have already described. This creates social interactions without requiring verbal communication and it gives people a chance to have an influential role in a community, something which is often unobtainable for people with dementia. I also encourage people to take the role of teacher or connoisseur by taking their song suggestions and opinions seriously, and by asking them to demonstrate. Even when this seems too difficult, perhaps the most dementia-proof way of experiencing music-enhanced community is simply enjoying the synchrony created by sharing a pulse, action or vocalisation – this is not something that should be underrated!
Music activities offer many cognitive benefits for people with dementia, exercising memory functions and aiding reminiscence which may contribute to a continued sense of self and identity. This can bring great joy to family members who are delighted to see their loved one retaining their old preferences and memories, seeming more ‘like their old selves again’. It is important to remember, however, that even if musical activities do not stir up past memories or aid memory functions, they would still be valuable, just as people are valuable regardless of intelligence or functional capacities.
A person’s value and humanity does not rest in their cognitive functions as John Dunlop describes:
God is glorified by the way dementia provides us with an opportunity to critique some of our basic assumptions and values. All too often, we attribute too much value to our own intelligence and functional capacities. God does not value us the way we do. He sees our value rooted in nothing less than our being made in his image and redeemed by Christ.
About a year ago I sang Rock around the Clock in a care home and the activity coordinator who was present said ‘look at Samantha – she is nearly rocking and rolling out of her wheelchair!’ Yet when I sang the same song earlier this week, Samantha now didn’t seem to recognise it at all. She still smiled at me, but she looked confused and as if I was really quite odd to have put those chords and lyrics together. Her lack of recognition can seem sad, but the act of singing to her and her smile were still valuable because her worth is not dependent on her memory.
Last year I played the tune of How Great Thou Art on my flute in a music session for people with advanced dementia. A lady who I thought was asleep started to sing along and clasp her hands together. When she ran out of traditional lyrics she started to sing her own words, or rather I should say pray her own words as she quietly sang about her hope of heaven and talked to God about how she would be with him in glory. Dementia had made holding a conversation with her difficult, but somehow her faith shone through at this moment.
Perhaps it will become less apposite to use hymn tunes in dementia music workshops over the next few decades, but the current demographic in my sessions seem to have grown up with traditional hymns at school even if they didn’t attend church. I find that including a hymn tune in a music session generally goes down very well. This might just be because they are nice tunes that people recognise, but I hope and pray that they might also encourage those with faith, allowing them to express worship together and reminding them of glorious truths. I sometimes wonder if the words associated with the tunes might stir the hearts or prompt those without faith too since people with dementia often recall lyrics from their children better than they do their breakfast that day, but that remains a mystery.
I have known Christians who acted totally out of character as their dementia progressed, becoming aggressive or rude or crude. This is not, however, evidence that they have ‘lost their faith’ – we are saved by the Spirit at work in whatever cognitive and physical faculties that God gives us at any one time. Hymns are a great way to remind people of their faith, not in a hope that it will necessarily change their behaviour, but rather in the hope that their faith remains despite their actions which are less inhibited. I find Jeff Robinson’s article about his mother particularly helpful when we find ourselves questioning whether dementia can draw people away from God:
God has not forgotten my mother. Perseverance of the saints is also preservation of the saints. God’s promise to Joshua, the writer of Hebrews reminds, is a promise to us: “I will never leave you or forsake you” (Heb. 13:5). My mother’s mind has left, but the Spirit of the living God continues to indwell her. Jesus promised not to lose one of the sheep the Father gave him and nothing, dementia included, will snatch them out of his hand (John 10:29).”
In the next 'Music and Dementia' blog post, we’ll be looking at ways in which this 'musicking' can realign our perspectives on eternity, music and serving others, as well as the more nitty-gritty topic of where to draw the line when it comes to lewd lyrics and bottom-slapping.
 Palmer, M. (2001) ‘Older adults are total people’, in Expressive arts with elders: a resource, Weisberg, N. and Wilder, R. (eds.) 2nd edition, London: Jessica Kingsley Publishers, pp.179-187.
Eckl, F. (2012) ‘Music and the Quality of Life in Old Age’, Graz University: www.uni-graz.at/~parncutt/fk_arbeiten/EcklBachelorsThesis2012.pdf. Unpublished theses.
 1 Corinthians 15:42-43. NLT.
 Overy, K. & Molnar-Szakacs, I. (2009) ‘Being together in time: Musical Experience and the Mirror Neuron System’, Music Perception, vol. 26:5, pp. 489–504.
McGuiness, A. and Overy, K. (2011) ‘Music, consciousness, and the brain: music as shared experience of an embodied present’, in Music and Consciousness, Clarke, D. and Clarke, E. (Eds.), Oxford University Press, pp. 245-260.
Nystrӧm, K. and Lauritzen, S.O. (2005) ‘Expressive bodies: demented persons’ communication in a dance therapy context’, Health, vol. 9:3, pp. 297-317.
 Peretz, I. & Zatorre, R.J. (2005) ‘Brain organization for music processing’, Annual Reviews Psychology, vol. 56, pp. 89-114. Peretz and Zatorre found that attending to and recognising music exercises working and long-term memory.
Palmer, M. (2001) ‘Older adults are total people’, in Expressive arts with elders: a resource, Weisberg, N. and Wilder, R. (eds.) 2nd edition, London: Jessica Kingsley Publishers, pp.179-187. Palmer speculated that learning to sing or recognise new songs redevelops memory functions that residents do not usually use.
Karras, B. (1987) ‘Music and Reminiscence: For Groups and Individuals’, in You Bring out the Music in Me, Karras, B. (eds.), London: The Haworth Press, pp. 79-91. Working as a music therapist, Karras notes how reminiscing on music’s past contexts maintains residents’ sense of self and identity.
 John Dunlop https://www.desiringgod.org/articles/god-will-keep-you-through-dementia, accessed 20th December 2019.
 Jeff Robinson, https://www.thegospelcoalition.org/article/some-thoughts-on-dementia-and-the-gospel/ accessed 20th December 2019. Personally I might replace the phrase ‘My mother’s mind has left’ with ‘My mother has suffered neurological losses/reductions in cognitive functioning’ but his point about the Spirit remains.