Dementia playlists and musical memory

The music therapist I was with looked aghast; she immediately went over to the woman, moving her back from the screen. As she turned off the TV, she reassured the woman, telling her she could open her eyes if she wanted to. The woman’s hands gradually fell away from her ears; the therapist took one hand, her touch instantly slowing the shaking of this frail and frightened woman. They sat together a while, the woman making eye contact with the therapist as she continued to reassure and comfort.

Question after question ran through my mind: Who was she? Did she have any family? Would they ever find out about this? But the one question I kept coming back to was: How would I have reacted if she had been my mother?

What I knew I’d experienced was genuine compassion and care on the part of the music therapist. I was shadowing her; I had learned about music therapy and wanted to see it in action before deciding whether this was the career for me. My mind was made up in that moment, and I hadn’t even heard a note of music played.

My decision was later reinforced when I joined her for a group session with people living with severe dementia. As the session unfolded, the music being modulated by the music therapist in response to each contribution while holding the overall group feeling, I saw all the group members come together and be in the here and now. Vacant gazes transformed into laser-sharp eye contact, with words of connection exchanged. You could see how they were reconnecting with themselves and others in the way their eyes sparkled.

These profound experiences irreversibly changed my understanding of and relationship with music. Little did I know, just over ten years later, I would be directing the Music for Dementia 2020 campaign. 

Dementia connects all of us

I recently gave a presentation to a group of senior leaders within the NHS and afterwards I was struck by how many people spoke to me, starting their story with: “My mother/father/in-law has dementia. I wish I had known about music sooner.” Of the 66.9 million people currently living in the UK, it is estimated that 24.6 million – that’s 38 per cent of the population – know a family member or a close friend living with dementia. It’s a condition that is becoming so prevalent that every three minutes someone in the UK develops dementia; in musical terms, that’s one person for every song played.

We don’t yet have a pharmacological answer to dementia. I’m not beyond hope of that being achieved one day, but until then, we have a significantly growing number of people living with dementia – an estimated one million by 2021 – and we as a society have a duty of care to provide the quality of life that they deserve and that helps them live in the here and now.

Why music is a necessity

I recently came across this phrase, “Once you’ve met one person with dementia, you’ve met just one person with dementia.” For me, this resonates with what I talk about: “The right music at the right time, in the right way, by the right person.”

Music is highly subjective. While I campaign to ensure that everyone living with dementia has access to music as part of their dementia care, I am also highly attuned to how, in order for music to be beneficial and transformative, it must be personal. We are all inherently musical beings and have our own unique relationship with music. When we tune into that, whether it’s via a playlist, making music through singing, playing an instrument or music therapy, or one of the many other countless ways of experiencing music, that’s when music has the power to transform lives.  

The tidal wave of dementia isn’t something in the distance; we’re just about holding on to the raft that’s keeping us above water. Services are stretched, our workforce is exhausted and under unfathomable strain. Our invisible workforce of carers within families is propping up state services across the country, and people living with dementia are not experiencing the quality of life they have the right to.

Medication is too highly relied on – a Department of Health study concluded that of the 180,000 prescriptions for people living with dementia, 140,000 are inappropriate. Too many people who experience the behavioural and psychological symptoms of dementia, such as agitation, aggression, loss of inhibitions, depression and psychosis, are given medication when research has shown that music therapy can reduce these symptoms and the need for such medication.

Making music personal

I am not advocating for the indiscriminate use of music, as we live in a deafeningly noisy world already. Music has the ability to transform and do good, but used lazily, it can do harm, and we must work hard to make sure that the appropriate thought is put in place around the use of music for people living with dementia. If you subjected me to some kinds of music, I wouldn’t for a minute thank you. Imagine how that might translate for someone who isn’t in a position to articulate themselves verbally.

A few months ago, I had a conversation with a woman with posterior cortical atrophy (an atypical variant of Alzheimer’s disease) and she told me she couldn’t tolerate music – not because she doesn’t like it, but because of her dementia. She can no longer enjoy it in the ways she used to. I saw her at an event recently and she told me that she had started to experiment with music. She was discovering the ways to make it work for her. This, for me, said everything.

Music enables you to see people for who they are, beyond their dementia. Whether someone is just beginning their journey with dementia or in the final moments of life, we all have the capacity to respond to music. It can accompany someone throughout their experience, wherever they’re at, be it a good day or a tricky day. It can enable them to be contributors to and not just recipients of care.

If you’re reading this thinking, “I’m not musical,” you still have the capacity to improve the quality of life for people living with dementia by helping to make music an essential part of their care. If you know someone with dementia, you can suggest music for them to listen to, or help to raise awareness of how music can help them.

For as long as we don’t have a pharmacological answer to dementia, why would we not use something that we can all make happen, in one way or another, in all its many rich and wonderful forms, to ensure that people living with dementia have the quality of life they deserve? If you’ve seen the documentary Our Dementia Choir, you will know that for people living with dementia, music isn’t a privilege – it’s a necessity.