Chelsea Mao • June 18, 2025

Everywhere at the End of Time: Understanding Dementia Through Music

This article was written by Chelsea Mao and is part of a series provided by upper year Health Sciences students at McMaster University.

 

Everywhere at the End of Time by The Caretaker is the alias of English electronic musician Leyland Kirby. This is a 6-album series in which they use loops of sampled vintage jazz music, featuring tracks such as “Heartaches” by Al Bowlly and “Say It Isn't So” by Layton & Johnstone. The product depicts a slow and harrowing progression, as it is a piece of haunting experimental music and noise. The albums were released from 2016 to 2019 in 6-month intervals to convey the passing of time, rendering themes of decay, melancholy, and confusion through this abstract 6-hour series. 

 

The first album is simply a compilation of samples of 1930s jazz music, noting that those living with dementia today have most likely lived through that era of music. As we progress to the second and third albums, the music slows down but is still recognizable, similar to how life slows down with time, but we still possess memories of the past. The music becomes distorted and eerie, and the sounds of the vinyl record crackle, symbolizing the waning of one’s memories with hints of confusion. It almost sounds like the realization of memories fading away with an incohesion of the past. The fourth album is when it feels like it’s practically an entirely different album. Songs and instruments start and stop playing randomly, exemplifying the memories becoming entangled and repetitive. The fifth album brings a level of fear to this 6-album series. It made the unfamiliar sounds of album four sound familiar, caked with a layer of confusion. The last album is a depressing depiction of uncertainty. The sounds of this album are so quiet that they seem loud

 

There are many misconceptions about what dementia is defined as, but generally, dementia is an umbrella term used to describe diseases that cause abnormal brain changes. Most commonly, people living with dementia struggle with cognition and experience a range of behavioural and psychological symptoms like agitation or depression. Although it’s found that Dementia often impacts people over the age of 65, some can still experience it at an earlier age, as early as their 40s and 50s. So, it’s crucial to grasp the symptoms of dementia and find ways to mitigate such symptoms to ease your loved ones with dementia. 

 

This is why I chose Everywhere at the End of Time, as music is a universal language that we can use to communicate with each other, no matter our background. The album helps us, the caregivers, to recognize the distressing and frightening reality of people living with dementia.

 

For my entire life, I’ve always loved to drink Coca-Cola, and I think part of it was conditioned by my grandma. She always had a can of Coca-Cola, whether she was watching TV or playing board games with me. A few years ago, she was diagnosed with Alzheimer’s disease. It took a toll on me because we had always been really close, and with her living in China, I felt useless because I wasn’t able to be there and care for her. She's at the stage now where she hardly recognizes me. I understand that her memory of me and herself is fading, but I know that she is still there because even when she is having trouble eating food, she will always have a Coca-Cola with her meals. Although it’s hard for me to watch someone who essentially raised me (alongside my mom) suffer through this, I can’t fathom the pain and confusion she has to endure with dementia. 

 

I think many caregivers struggle to help patients experiencing dementia, and it can even have an adverse effect on their personal mental health and flourishing. However, music can be used by the caregiver or anyone to connect with those living with dementia, and I think it’s such a powerful tool for overcoming barriers between caregivers and their patients. Whether we use music for communicating with others or for regulating emotions, it’s pieces like Everywhere at the End of Time remind us how closely related music and health are.



By Shelley Neal May 28, 2026
For most of my practice of coming alongside people in care or at the end of life, my harp has been the extension of me. It has traveled in ICUs, nursing homes, funerals, and celebrations of life. But for George, it couldn’t reach into the depths of his ears or into his soul for soothing, comforting, and connecting. George became profoundly deaf at the end of life. George, in his youth, was a very active and attractive young man with many skills athletically and also musically. Both he and his brother were incredible tenors in their church choirs from youth until their sixties. They sang duets and solos in church and with Gilbert and Sullivan Productions. It was actually there that George met the love of his life, Audrey, and they sang together. In my youth at church, George was often gowned in the choir garb, enjoying the music of the church and those “olde hymns”. Later, George’s father’s work as an assayer took him at the age of 16 to Jamaica, where he fell in love with the folk music of the isle. At home, he loved watching Don Messer’s Jubilee; country music was his soft spot. Often after dinner, he would start the turntable and listen to the crooning of the country and western storytellers. Aging, as they say, is not for the faint of heart. The loss of hearing was a huge adjustment for George, and the loss continued until even the hearing aids no longer worked. I would take Ruby, my little red harp, into the nursing home to play, and he would gently smile in his George way and shake his head that he heard nothing. This is where I became the student during the journey. George would bring out copies of his music, such as old hymns and lyrics of favourite love songs. These copies would be yellowed and delicately thin with age. He would begin to sing in his mellow tenor voice, and the memories flooded back. He shared the copies with fellow residences and staff. He would sing to them all. My job was to listen and take in his rich history of music that journaled the passages of his life. Our favourite haunt in the last nine years was Swiss Chalet, every Sunday evening. Often, our Jamaican staff would come out and sing to George. He really couldn’t catch the words the first couple of times, and then he would lip-read Diane’s words, “Come, Mr. Tally Man, Tally Me Banana,” and everyone at the table and surrounding tables would sing. George would randomly sing songs of the past during these dinners, remembering all the words as well as the moments these songs elicited. Then, the talk and connection went deep. His son, Peter, would take notes about all of these wonderful events of a man who lived a humble life well. Our portal into the life of George often came through old black-and-white photos, old hymn books, even old 78 records. He would smile, close his eyes, relax in his lazy boy, and the vocal music would begin. With the music came the stories of life traveling with his family, the depression, World War 2, meeting Audrey, raising his family, and connection with others through music. Even though he could no longer hear, he remembered and could still give the gift of song to others. The lesson is that music is so much more than sound; it is the connection, the stories, and the memories. We, as music care advocates, need not pass by someone who can’t hear as we may feel not useful, but to think beyond the physical sound into the memories of a song. The use of old pictures and hymn books helped us to enter into the past, as did the conversations cards of Music Care. Our job is one of connection and valuing the humanity of a soul. Music provides rich soil for connection. As our body ages and access to many things diminishes, we must still consider how to adapt our approach of using music to connect, through pictures, conversations, touch, and just being in space together sharing who we are. Shelley Neal is a special education teacher and program coordinator, therapeutic musician, and music care advocate in the Greater Toronto Area. Shelley uses music to deliver curriculum, support movement and language development and communication skills with non-verbal children. Her goal is to come alongside people and use music in whole person care.
A guitar , cowboy hat , cowboy boots and hay are on a wooden table.
By Shelley Neal April 2, 2025
I undertook the MUSIC CARE Certification program when I had journeyed through caring for my mother with Alzheimer’s. It was during my training, I learned how music works in terms of timbre, melody and rhythm and beat, music care domains and music care strategies. It helped me to support mom as the disease progressed. I continued to certify through Music Care and then I had the joy of teaching others the level 1 program Fundamentals of Music Care Theory and Context . I have loved coming alongside others in Long Term Care and using music to support giving voice of what is within one’s life, preventing isolation and loneliness, creating community. I enjoyed all it all. Then, I found myself once again in the Emergency Room with Tim, (my family member) as we were helping him home in his palliative journey. My “outside life” took a back seat and my inside hospital life began. Tim’s was failing and he was no longer able to open his mouth and swallow to obtain nutrient’s due to Parkinson’s . We tried various types of foods, textures and flavours, however, opening his mouth and swallowing remained inaccessible. Tim loved Glen Campbell and Rhinestone Cowboy . When he was a young man, he would repeated play this song until the LP was worn through. He was given a new Glen Campbell CD at Christmas and the song was welcomed back into our lives. There I was ,in my new environment on the tenth floor of the hospital, playing Rhinestone Cowboy. Tim sang along. He actually sang along! He moved his mouth, swallowed and sang along. We were able to get pureed food into his body. Later, the disease continued to ravage his body and Rhinestone Cowboy helped us connected with other such as the speech language pathologist, doctors, cleaning staff and nurses. We sang and danced together with the music and Tim smiled. He knew he was part of a community who loved him. As we knew the end was coming, I played music with a simple melody, 60 beats per minute and soft timbre on my harp to support Tim as he fell into sleep. Near the end, I used tonal music in simple phrases to support calmness matching his breath. Tim passed peacefully and gentle. Today, at his funeral our last song “Rhinestone Cowboy”. After hearing the importance of this song, all the people present joined in singing to honour the village of Tim that so lovingly cared for him. Music Care training has become a natural rhythm in my life to use with aging and sick family members, supporting young children’s learning and providing self-care when I was tired after intense caregiving.
By Shelley Neal March 8, 2024
I initially trained with MUSIC CARE to work with Seniors in Long Term Care who were experiencing dementia and Alzheimer’s Disease. This is the path I travelled with my mom. My training with Music Care and Room 217 supported capacity building in selecting music that was played on my harp or chosen recorded music. The music centered on the care of the individual and their specific needs. My job was to determine the individual’s specific and select music to address these needs. The music selected helped to build community, support sleep, talk about life experiences, create a background landscape of sound, support connection to decrease isolation and loneliness, as well as coming alongside people dying. My training with Music Care helped me understand how to support people “where they were” physically, emotionally, and spiritually. Through using beat, tempo, melody, and timbre, I could cater the music and desired support required for individuals or small groups. My profession is teaching. I am a special education teacher and use music in my primary teaching as a method for learning, practicing language skills, transmitting information about science studies or math equations, as well as having fun and creating our own songs. My teacher toolkit married exceptionally well with the knowledge and skills provided by the Music Care Certification training. Recently, my work with students has involved individual programming for the medically fragile children and the palliative children. I use music (repeating the chorus several times) to engage and connect with the kiddos. We use music to "talk" about feelings (our communication is through eye gaze, eye blinks, and squeezing hands), and content material. I use music to enjoy our relationship of being together. At times, due to medication for seizures, my little ones can be very sleepy. I increase the tempo, engaging in tapping the beat on her hands and using silly action songs. The giggles and wiggles make it magical. I also use music to tell stories (my students have CVI, cortical vision impairment, so visual perception is difficult). This helps the child to engage in the story arch and adventures. Music is my conduit for reaching out and being with the students. Recently, I had the sacred journey of visiting one of my children in ICU at Sick Kids. I was invited to come to say "goodbye". A dear friend who was an ICU nurse in a different department told me (AKA, insisted) that I bring my harp with me. I wasn't sure if this would be appropriate for the family. However, with the permission of the mom, I bravely packed my harp up and took it to the Unit. It was a beautiful evening of talking with their mom and dad about how special their child was in my life. I played the kiddo's favorite songs and then ended with "The More We Get Together". The little one opened their eyes and stared at me. We hugged, and I left. They passed the next morning. I consider this time to be a sacred gift. Music Care Certification has given me the confidence and toolset to work alongside people and to journey together. It is a time a beautiful, difficult, or sacred time that I have been honoured to participate in.  Thank You
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This article was written by Julia Cara, and is part of a series provided by upper year Health Sciences students at McMaster University.
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