The Music Detective

Andy the 'Music Detective' with the charity Playlist for Life helps people living with dementia and their families to track down the music that has formed the soundtrack to their lives.

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Playlist for Life Tour of The Western Isles

Looking forward to the Tour of The Western Isles sharing the word about Playlist for Life. Raising awareness of the power of personally meaningful music. Its Barra 2nd-5th September. North & South Uist & Benbecula 5th-7th September. Harris & Lewis 7th-12th September. Look out for posters advertising local events.

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Headphones or Speakers

We are often asked “Why headphones?” or are told “My mum will never tolerate headphones,” and very often are asked if headphones work with hearing aids.

Here I’ll try to give some answers to those questions, but I’m not an audiologist and if you or the person you care for wears hearing aids, ask your audiologist next time you see them to get your hearing aid serviced (at least every 6 months).

First it’s important to say that early after diagnosis there is probably no need to think about headphones. Simply sitting listening to your music perhaps with a loved one or friend through the technology you currently use is great fun and will no doubt give you those flashbulb moments when you hear music that takes you back to a time in your life, a person, a holiday or other memory.

If the technology you use is still working for you great! If the music is now in one place such as a CD, mp3 player or iPod, think about getting a small speaker. This makes the whole thing more portable.

There are many great mini speakers available for around £30.00 or less. Sound quality is of course linked to price. Go to one of the big electrical retailers and get their staff to show you the options and play music through them. When I was buying one I took my iPod into the shop so I could hear my music through a few speakers. Don’t get worried by things like Bluetooth. Most of these speakers come with an auxiliary port for an audio cable. Again the staff in the electrical retailers will be able to advise. 

Speakers like this one are about the size of a box of After Eight Mints.

As we age many of us will already begin to experience difficulties with our hearing. It was once described to me as TMB syndrome. TOO MANY BIRTHDAYS! Some of us ignore it of course, much to our families annoyance. I know that my conversations with my own mother are punctuated with her frequent use of “Sorry?, Sorry?” or “Pardon?” As I mutter under my breath I know she is saying to herself “It will come to you too one day!” She’s probably right as the prevalence of hearing loss doubles for every decade of life.

Coupled with age related hearing loss, a diagnosis of dementia can mean that our ability to process sound and concentrate on one single sound (e.g. a voice, or music) in an environment with many sounds can become compromised. Our brains now have to work even harder to do this. Wearing headphones can assist with this as they block out many competing sounds and enable us to concentrate much easier. A speaker may just become one more competing sound. So try headphones.

Headphones can really help you to hear and concentrate on your music. There is a huge range of options and prices but I’ve found you don’t need to spend a fortune. Once again your electrical retailer will help but here are some basic things to consider, particularly about the size of the headphones.

Many of the devices such as iPods and mp3 players come with in-ear (ear-bud) headphones. I don’t recommend these. They are difficult to clean and fall out easily as our ears age (and become floppy!)

Next size up is On-ear headphones. As the name suggests these sit on the ear over the earhole. They are lightweight but do not cancel out other external noise quite so well as Over the ear types.

I think the next solution is best, but as with everything it’s down to individual preference. Over the ear headphones have a bigger headphone cups which can cover the whole ear. I repeat my advice to speak to your audiologist if you wear hearing aids but from my experience hearing aid wearers need to use these over the ear headphones.  These need to have a large enough headphone cup so that it covers the hearing aid and the speaker is far enough away from the hearing aid to avoid feedback.

Tolerance of headphones is very individual. Don’t immediately reject them as an option particularly as the journey continues. Try a few different times with different music. If we’ve not been listening to music for a while, it can take time to tune in.  

I hope this advice helps but please feel free to add a comment or question and I’ll respond as soon as I can.

Thanks!

‘The Music Detective’

[themusicdetective]

Chronic Pain and Dementia

Following on from last weeks Blog on How Music Can Ease Pain in Dementia (https://themusicdetective.tumblr.com/post/159149957721/music-can-ease-pain-in-dementia) please listen to this Podcast from Airing Pain (Pain Concern) where Andy 'The Music Detective' talks about Pain in Dementia and PlaylistForLife with contributions from Professor Peter Passmore (Professor of ageing and geriatric medicine at Queen’s University Belfast) and Dr Lloyd Hughes (GP trainee specialising in geriatric and stroke medicine at the Royal Infirmary Edinburgh). 

https://audioboom.com/posts/5806800-89-dementia

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Rules of memory 'beautifully' rewritten check out this interesting BBC Report

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Music can ease pain in dementia

We all know what its like to have a nagging pain don’t we? It affects just about everything we want to do and how we respond to even the people we love the most.

People living with dementia feel pain just as we do, and ‘Old age doesn’t come alone’ the Scottish saying reminds us. Of course that’s often true. Osteoporosis, foot problems, arthritis, rheumatism, tooth and denture problems…. Just a few to look forward to…!

Until fairly recently there has been an under-recognition of the experience of pain in people living with dementia. Simple analgesics like paracetamol can have a positive effect on pain and the associated agitation linked to the pain.

The Playlist for Life training package uses the Personalised Music Assessment Tool (Developed at Nottingham University Hospital Trust) to measure the impact of a music playlist on pain as well as a number of other factors. Staff are encouraged to use the Abbey Pain Scale or Pain Assessment in Advanced Dementia Scale (PAINAD).

What Playlist for Life is able to report is that when we assess pain in those who have access to their personally meaningful music, their experience of pain is changed and feedback so far show from staff show that those using a Personalised Playlist, are experiencing less pain related agitation.

We believe there are a number of reasons for this.

Music particularly that which is part of our unique soundtrack to our lives, music that gives us those ‘Flashback Moments, distracts and refocuses our attention away from pain to the positive experiences of music listening. When listening we become immersed in the emotional meaning of the music and the autobiographical memories attached to it.

Affectively (and we’ve all witnessed and experienced it) the music changes our mood.

Our sensory responses to pain, the neuro-mechanisms responsible for the experiences of pain are often modulated.

Listening to music supports the release of endogenous endorphins which make us feel good.

So when you are counting out your pills everyday, why not try adding in a few of your favourite tunes too?

[themusicdetective]

If Music be the Food of Love….

I’m not a theatre critic, I’m a Music Detective. So I was intrigued when I was invited to take part in two nights of post-show Q&As in a London Theatre.

I’m writing this on the train home….. glad of the time to reflect. The Q&As with members of the audience were fascinating and it’s been a thought-provoking and inspiring two days. A huge think you to the theatre company Off the Middle who produced ‘In Other Words” the debut work of Matt Seager, who also stars as Arthur.

The play tells the story of the fifty year relationship between Arthur and his wife Jane played by Celeste Dodwell

In the first few minutes we see Arthur and Jane meeting for the first time and a ‘red wine incident.’ An apology is made…. a rebuff … an apology …. And finally accepted, to a dance, an embrace, the start of a love affair. 

That first dance was to a song that Arthur and Jane both loved. It was Sinatra singing ‘Fly Me To The Moon’ (hence ‘In Other Words’). It became their song; the theme tune to their love affair. Each time they heard it they were both taken back to their first meeting and ‘the red wine incident.’

During the course of the play we watch as Arthur develops dementia and ‘the couples love story was turning into a tragedy’  of those living with dementia to borrow a well-kent phrase from my good friend Tommy Whitelaw (@tommyNtour), a tireless campaigner giving voice for the reality of those living and caring for people with dementia.

But the play shows how even through the difficult times (and there were many familiar one’s portrayed), when their song was heard you could see and feel the couples love for each other pouring back in. 

It reminded me strongly of the true story of Harry and Margaret, the first couple I worked with as a Music Detective. “Listening to his music together let me fall in love with him all over again’ said Margaret

Towards the end of the play when Arthur seems lost to Jane and indeed himself; when understandable language is deserting him when he hears that tune he is able to find the words to say to Jane, “it was red wine, wasn’t it?” A memory, seemingly lost, restored. The tragedy returning to a love story.

Shakespeare wrote In Twelfth Night for Duke Orsino “If music be the food of love, play on; Give me excess of it.” Orsino is asking for more music because Countess Olivia is not responding to his advances and he hopes that an excess of music might cure his obsession with Olivia.

 We on the other hand shout GIVE US EXCESS OF IT, as we know that so many love stories like Arthur and Jane; so many love stories in families, can be supported by something as simple as personally meaningful music. 

The play was wonderful and the actors portrayal fabulous and honest. It for me validated that what Playlist for Life is trying to do is right.

Thank you Matt, Celeste and Stephanie and all others involved. I look forward to you bringing the play to the regions outside of London.

The Music Detective.

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Don't Be Shy... You're a Music Detective!

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Every Day’s a Learning Day (Part 2)

Thanks for the great response to Part 1!

(http://themusicdetective.tumblr.com/post/157531887396/every-days-a-learning-day-part-1)

You may remember I told you the story of Mark who lives with dementia aged only 48 and his dad Tony. Mark has only a few recognisable words but in general can no longer communicate in ways we would understand, but his carers in the hospital reported that he had started to sing while listening to his playlist for life.   Tony was overwhelmed by the idea of hearing his son’s voice again, but sadly no-one wrote down what song it was that had triggered this magical moment.   Being a Music Detective, just like being a carer, isn’t a solo job.   It is about building a team around the person with dementia and their family. Working together to find the right music for a person.   First you must build a long-list of possible tunes and then observe the person’s reaction to each song. Some tunes the person may just like, and that’s ok. But if they are only ‘liked’ tunes the conversation around them is limited. Playlist for Life is about identifying these tunes but more importantly, those tunes that trigger a response because there are autobiographical stories and linked emotions behind those tunes.   I came back from my meeting with Mark and Tony and realised that we needed to think of a way of helping everyone in Mark’s care team to communicate and work together on his playlist.   Here I reflect on how we might respond when we get those flashback responses when someone we love or care for responds to the music they hear on their Playlist.   I guess my first reaction is to celebrate those responses and see it as an expression of identity and personhood. It’s their reaction to their emotions stimulated by something as simple as a song, a TV theme tune or other piece of music (I’d have birdsong on my Playlist!).   Now that response won’t always be dramatic with singing and dancing. I remember having built a Playlist with Cathy and her daughter, thinking after a while that it wasn’t working with Cathy. Her family though were quite excited and were saying thanks. Although I couldn’t see an obvious impact her daughter pointed out that her mum had just picked up a biscuit to feed herself for the “first time in years.” Subtle indeed.   Mary, another lady had a reaction which I call “diddle, diddle moments.” Mary would listen to her music (which just happened to be the Scottish folk song, Mairi’s Wedding) and would nod her head in a musical and jaunty way.   What we have witnessed is a broad spectrum of responses, both physically (eyes opening, dancing, foot tapping, hand clapping, etc.) and verbal (singing, humming, whistling, mouthing the words, etc.), as well as being more engaged with their surroundings and the people around them. As I say many of these are subtle.   You need to observe the person over time and look for these responses and then you need to share what you have seen or heard. Write it down in a care / plan, playlist diary or journal and of course tell others. Don’t loose that moment.   What you will have done is connect a person to their music, perhaps to others and crucially if just a little to themselves. Now you are becoming a ‘Music Detective’. Well done!

[themusicdetective]

Every Day’s A Learning Day (Part 1)

Many of us (not everyone!) dislike the sound of our own voice, but it is also true that most of us will recognise family, friends even acquaintances by their voice alone even if we have not been in their company for some time.

Our voice is important. It’s part of who we are, part of our unique identity.

Many of us have experienced the loss of a loved one or friend and unless we have had the foresight or good luck to record their voice, that is one of the things we miss and grieve for.

To no longer hear them say “hello”, or “I love you”, or just talking about their day. We miss that, don’t we?

That is why the experience I had the other day really had an impact on me.

As The Music Detective, I have been supporting a family who are living with dementia. In this family it is the son, Mark, who is affected. Mark is only 48 years old. He has been living with fronto-temporal dementia for several years

Tony* (Mark’s dad) visits his son every couple of days at the hospital where he has been cared for over the last eight months. Tony and the rest of the family have made Mark’s playlist for life for him. It includes 73 songs from the 80’s and 90’s as well as some of the well-known standards.

Mark has many of the symptoms of fronto-temporal dementia, including the way it has affected his ability to communicate verbally. His verbal communication now is made up mainly of groans, giggles and “ooofs”. He rarely uses words that we would understand.

The other day I visited Mark with Tony. We sat listening to Mark’s playlist. A member of the care staff came in and said,

“Yesterday Mark was singing along to some music he was listening to.”

“Singing!” exclaimed Tony “What...? Words?”

“Yes” said the carer “He was singing the song.”

“Unbelievable…….” Said Tony. He had a tear in his eye.

This had a big impact on me. What was happening?

Later I asked Tony if he was ok as I had noticed he had become a bit emotional.

“I haven’t heard Mark’s voice for seven months. There have been many losses over the years and his voice has been one of them.” 

Before leaving the hospital, I asked the staff what the song was, that Mark had sung. I wanted to play him that song and keep him singing. 

Sadly, frustratingly, nobody could recall what the song was.

One day soon we will find that song Tony and Mark - and others - if we keep trying.

On the drive home I reflected on the learning of that moment. 

What would it be like to lose my voice and not be able to communicate? 

What would it be like if my child developed dementia and I could no longer hear her voice?

I have determined that I am going to record my daughter’s voice: singing, reading, shouting, cheering… and I am going to remember the songs that she sings and make a playlist out of these songs. In fact, I think I better record my own voice too. 

Every day’s a learning day.

*names changed to protect anonymity

[themusicdetective]

“His Music Helped Me Fall in Love With Him Again”

Margaret O’Donnell was the first real ‘Music Detective.’

I first met Margaret four years ago when Playlist for Life was just starting out. Her husband Harry had advanced dementia and was struggling to connect with Margaret and his surroundings. Together Margaret and I built Harry’s playlist with personally meaningful songs and played it with him every day. Harry and Margaret were the first couple Playlist for Life ever worked with.

Last week I met Margaret again at our office in Glasgow and we remembered those times. Margaret said something she had never said before that reminded me of the human cost of dementia and the power music can have.

Margaret said that the demands of caring for Harry and her mother at the same time meant there hadn’t been time to focus on her relationship with Harry. This got worse when he eventually required more intensive care and support in Craigielea Care Home.

“We didn’t have time to enjoy being together the same” says Margaret.

“Listening to his music didn’t just help Harry.... it helped us to reconnect again... I fell in love with him again...”

(You can see the film about Harry and Margaret here)

Thank you Margaret and Harry from Andy, ‘The Music Detective’ and Playlist for Life. 

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The late Dr Oliver Sacks on #music #dementia #memory and #emotion

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Music helps a man with Parkinson’s Disease to walk better again.

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Wednesday Tip

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Looks like it’s Playlist for Life - Moray

The people of Moray turned up in droves and it looks like we’ll be supporting a Playlist for Life Network across Moray! Thanks to all who attended and for your enthusiasm!

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A really useful introduction to learning about dementia from Alzheimer’s Research UK

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Thanks to Mary and my co-detective Jo. Mary you made us ‘feel so young’ too!