I’m Still Here

I’m Still Here

by Aoife O’Leary

 

The ability of people with dementia to recall familiar melodies and song lyrics is uniquely paradoxical, as dementia is most notably typified by a progressive decline in the cognitive faculty of memory, while research has shown that memory for music is in many cases largely untouched, or even spared by the neural degeneration of dementia.

My FYP began as an exploration of these claims, and involved working along PhD student Kellie Morrissey who was conducting a larger ethnography on the area of music and dementia. My research chose to focus on exploring the paucity in the current literature regarding the use of participatory music sessions to enhance the lived experience of dementia for older adults in care settings through an informal comparison of participants in residential care and day-care facilities. It aimed to provide further insight into the complex and multifaceted influence of music for people with dementia and it ultimately revealed something beautiful; music can be an immensely powerful communicator, connector and companion for people with dementia. This is a statement of which I am now certain.

The participatory music sessions benefited the participants in four distinct ways as seen through the emergence of the four core themes.

The music sessions enhanced well-being, as Maura remarked, ‘music is good for the soul, just sitting here humming along makes me happy.’ Additionally, music was primarily enjoyed at an emotional and sensory level, so that even people with advanced dementia and undermined intellectual capacity could still engage with the music. However, this enjoyment was in some cases transient, particularly in advanced cases of dementia, and the limitations of music are acknowledged.

The sessions facilitated social engagement and interaction as friendships were seen emerging through the large groups of participants dancing, laughing and singing together. The music sessions provided a platform through which residents were given the opportunity to become re-engaged within a tacit community. This was greatly helped by the use of musical instruments and props throughout the sessions as they helped people to physically connect with one another. Integrating and encouraging movement throughout the sessions created a strong sense of social cohesion among participants, the benefit of which was reflected when Sadie approached me at the end of the session and said, ‘thank you for coming to be my friend today.’

 

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Music also emerged as an activity that could temporally and physically connect people’s past and present selves. Familiar songs from youth could uniquely bridge lengthy interludes in time and connect experiences from the past to give them renewed salience in the present. This process surpassed mere reminiscence, which would be a hollow comfort if this was all music had to challenge dementia, it was a time-travelling effect. During the sessions I saw the how the right song could do more than make someone remember what it was like to be young, it could make them feel young again.

Music helped to empower people with dementia as they were encouraged to realise for themselves the power in what they were still able to do. When participants took on the role of performer within the music sessions you could see the confidence of people with previously diminished autonomy growing once more as they reclaimed their occupational capacity and took pride in their musical ability.

 

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I regularly left the care homes on a high, feeling like I was actively making a difference in the lives of others. However, other days I left the homes feeling emotional, undeserving of their gratitude and guilty. Guilty was I wasn’t doing more to help these people, guilty that this disease chose to target them and not me, guilty that I could walk away at the end of the session and carry on with my life, while they were stuck in a care home, waiting for people to visit and I was angry for what these people that I had grown to care so much for had lost, for all that dementia had stolen from them.

That is when I was challenged to reflect on my role as researcher and its limitations in this context and I concluded that overall, however ephemeral the benefit may be, the music sessions are worth it to see someone’s face light up when you ask them to dance, it is worth it when you hold a person’s hand and you see an expression of peace rest upon their face, and it is worth it when a particular song can reach a person where no one and nothing else can to show them the way home for a while. It was in these moments that I was certain that the music sessions were worth it for the participants, and they were worth it for me too.

Acknowledging its limitations, this experience showed me that the right song has the unique ability to reach a person’s soul, to connect with them emotionally and in some cases even lead them away from a state of distress, to a place where they can find peace and can reconnect with themselves, friends and family.

There is a quote which reads, ‘the most precious gift we can offer anyone is our attention,’ and the residents would routinely thank me for my time when I would visit.

One particular afternoon, Sadie approached me at the end of a session and said ‘I loved my day today’ and without warning my eyes welled up with tears because I felt so humbled, so privileged to be able to help make her day better, but also because I was awe-struck and so sad that she didn’t realise the truth which had always been so clear to me.

And the truth of the matter was that I should have been the one who was thanking them for their time, because whatever amount of attention, contentment and friendship the participants felt I showed them through these sessions, it really was only a fraction of the joy they showed me.