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Why silence is golden for dementia intervention



The silent disco has much more to offer than mere curfew-busting or the sidestepping of neighbourly noise restrictions.

It facilitates unified partying beyond the barriers of different musical tastes; and brings access to communal music where there would otherwise be none.

And thanks to a project in the US, its contribution to the world is fast becoming even more important and meaningful.

For the cultural phenomenon is being harnessed to help people with dementia, via a blossoming programme with global ambitions for positive change.

The silent disco turns public or private spaces into a make-shift dancefloor, with attendees wearing wireless headphones, usually tuned into one of three DJ channels spanning different genres.

Although its origins can be traced back to popular culture references in the 60s, its emergence has sped up in the last two decades.

Through the Memory Disco programme, run by US-based charity Day by Day Project, silent disco is also becoming increasingly common in the lives of people affected by dementia and other neurodegenerative and neurodevelopmental disorders.

Memory Disco has been developed over the last eight years to help both facilities and families to improve the quality-of-life for affected individuals. It is now being scaled up, with the support of silent disco firm Quiet Events.

The programme helps people with neurocognitive disorders to “smile, laugh and remember old memories and create new ones”.

The project also aims to contribute to the ongoing research and development required to continually improve the effectiveness of music engagement for people with neurodegenerative conditions.

Musical memory can survive long after other forms of memory and cognitive function have disappeared – and music as a positive force in the lives of people with dementia is well evidenced.

A Cochrane review of music-based therapeutic interventions for people with dementia, for example, included 22 trials in which music-based treatments were found to improve symptoms of depression and overall behavioural problems; and may also help to alleviate anxiety and improve emotional wellbeing and quality of life.

Furthermore, familiar tunes and lyrics can be recognised across all stages of Alzheimer’s disease (Cuddy, Duffin et al.).

According to Dementia UK, listening to or engaging in music can help people with dementia to develop and maintain relationships with others and improve their wellbeing. It can help them to express their feelings and ideas, verbally and nonverbally and act as a prompt for reminiscing.

The Day by Day project explains: “Emotional memories are rooted rhythmically in the brain eliciting feelings of joy, remembrance and connection when familiar tunes are played.

“While there may not yet be a cure for Alzheimer’s, dementia or other forms of cognitive impairment, music can have a profound impact on these patients by reducing agitation, triggering positive memories and improving overall wellbeing.

“The Memory Disco package is an effective way to connect and create new memories in a disease characterised by what is forgotten.”

NR Times spoke to those involved in the Memory Disco project to find out more.

Can you give us a brief introduction to the project?

Kaylie Glenn (founder and president, Day By Day Project): The Day By Day project has been around for a while now, it actually started with other musical interventions, but a couple of years ago, we figured out that silent disco specifically worked really well for those with neurological conditions, including dementia.

We employ a musical education programme that we’ve worked with neurologists for over eight years on, where we use different therapeutic techniques to engage as many parts of the brain as possible and orient it towards music, maximising the power that music has on the brain. What we figured out is that all of our emotional memories are stored rhythmically in the brain, and that’s a preserved skill throughout dementia. So even when there is language, movement and cognitive decline, they will always be able to connect to those memories and historical emotions.

We focus on three different techniques. The first is rhythmic engagement, the second is physical touch, and the third is community engagement. We have specialised segments for each one of those things that we use simultaneously to activate as many parts of the brain as possible. One thing we want to say is, we’re not music therapists, what we’re trying to do is create a way for everyone to have access to music as a tool. We’re hoping for less of a clinical practice and more of something that people can use every single day with a few different techniques.

Will and I connected eight months ago and talked about the potential of making a memory disco package and bringing this into facilities and homes of people struggling with finding connection tools for dementia. Quiet Events have facilitated the equipment to make this a reality, which has been really incredible.

William, for anyone who isn’t familiar with it, can you explain a bit about the silent disco concept and the technology behind it?

William Petz (founder and CEO, Quiet Events): A silent disco is really simple. It’s a party where you wear headphones, especially designed to tune into multiple channels… you create a party where everyone comes together to enjoy what music they want to listen to and you can switch channels on the headphones.

The technology is being used for more than just a party. We also use it for fitness classes, outdoor movies and our largest clients are actually using it for corporate conferences for the exact same reasons, they are more attentive, there are less distractions and they are a lot more focused on the person speaking.

Kaylie: There are these cognitive barriers that people have with dementia that limit their ability to engage with their environment, and those just happen to be the attention, neurological needs and cognitive needs. Using this headstone technology, we’re able to overcome those, so that everybody, me included, doesn’t have dementia, we’re all on the same level experiencing the same magical power of music.

Why is the silent disco format particularly impactful for dementia patients?

Kaylie: I guess the question we’re answering is, why not just play the music out loud? What we found is that silent discos really work for three reasons. The first is attention. It engages 100% of the limited attention span of a person living with dementia to maximise the power that you could have by using headphones.

The second is auditory, which means the volume of each headphone can be adjusted independently in line with the music, so that even if they have varying hearing needs, each person will be able to engage with that music. Then what we found is accessibility. Because it’s a technological device you can now bring the power of music into any place at any time by anyone, regardless of musical background or access to live music.

Anish Ganesh (vice president, Day By Day): Creating memories is one of life’s greatest gifts and being able to do that with music on a daily basis allows us to remember that people with dementia are one of us. We love music, but what we do is not necessarily about music, it’s about connection. It’s about helping people that are struggling with this disease, find peace and health and joy. That is the whole point, to change the narrative on such a heart-breaking disease.

How is this programme currently available and how would it be incorporated into a patient’s care package?

Kaylie: When we saw the power of the silent disco we just felt this needs to be in everybody’s hands. In order to make that happen, part of our memory disco package is over 15 activity guides that we’ve created to bring the silent disco experience into every activity. We have a rise and shine memory disco. Or our community memory disco where we incorporate Maracas and other rhythmic tools to really engage with the music. Each one of these activity guides actually lays out a step-by-step setup and we have created a playlist of music for every single one, so if they have the package they can just scan the QR code and play the playlist and then there’s an entire activity that’s already created for them.

William: We currently have 30,000 headphones and we have the ability to get them out all over the US, Canada, South America and essentially, globally so from the equipment side of things, it’s really easy for us to maintain.

Anish: I think that what care providers are really looking for right now is a tool to prevent burnout of a lot of the issues that they’re dealing with on a daily basis. The one commonality with all of this is that music is one of the only parts of the brain that’s still there, so at every stage of the disease of dementia. When we’re able to incorporate that into everyday activities, whether it’s right before bedtime, or during lunch or when they wake up, then those will alleviate a lot of the stressors and be beneficial for every single part of the day.

How could the Memory Disco be beneficial for reducing burnout in dementia carers?

Kaylie: One of the things that we focus on and that’s really important is the combination of the silent disco which is kind of like the mode of the music, in addition to the musical engagement techniques that the day by day project has developed over eight years to really intentionally engage different parts of the brain. That together transforms music as a fun thing that we did to keep an activity going to really be a caretaking tool, and something that people can use each and every day to elicit a de-escalation response, or help someone eat better or solve real problems in memory care while adding the benefit of when we call like caregiver retention.

A big problem is that sometimes caregivers get burnt out and they leave facilities and understaffing is a huge problem. When you give them a tool where one person can engage 30 residents at one time with these techniques, and when you give them a tool where they feel like they have autonomy over this disease, we find that their mental health is much better and they want to come to work every day, which is just as important as the experience of someone living with dementia, making sure the caretakers are taken care of.

And how does the patient’s family benefit too?

Anish: The easiest way to reduce burnout and the emotional stressors that come with being a caregiver is to be able to create memories with people that have dementia. My personal connection to this is my grandmother, she suffered with paralysis as well as memory loss and one of the only times I was able to connect with her was when I was sitting and playing guitar with her. And that was allowing our family to connect with her and to remember the way that we wanted to remember her. For people who don’t play music, to be able to have a tool for connection, to be able to create new memories with their loved ones, is what I hope that we’re able to create with this memory disco.

Kaylie: We see a future where for Christmas or Thanksgiving, kids and grandkids are dancing with their grandparents, instead of being sheltered from this disease. People are connecting and they have a safe space, where they can make new memories with someone that they may have not been able to before. Life would look different if we used music as that tool, but it also looks a lot more joyful and colourful and that’s what we’re advocating for.

There is a growing evidence base for the benefits of music therapy in dementia, how are you helping contribute to that knowledge?

Kaylie: One of our partnerships is with the Ohio State University extension services, which stretches across the whole state and we’re building a programme where we can start to gather data on what’s actually benefiting caregivers and create an evidence-based approach. One of the other things that we’ve done is collaborate with different universities so that college students are hosting these silent discos to connect young people with this age group, which is also very beneficial.

Have you got any plans for expansion and/or to take the project outside of the US?

Kaylie: Everything is virtually available at the moment and we have hopes to reach a nationwide audience. Right now we don’t have a global reach, but would love to in the future. We have had conversations with the NHS and helping people begin this initiative overseas is something we would definitely be interested in exploring.