A personal reflection of Dementia: An introduction for anyone

I’ve worked in a dementia care setting now for three years. When people find that out about me it’s not uncommon to get the head cock to the side, an emphatic sigh and a preconceived idea that I must use music to “bring people back to life”. I have never quite understood that phrase though; does living with dementia mean you will become lifeless? And where am I bringing them back from? Aren’t they right there in front of me? Ok, it’s not a completely crazy presumption given the nature of some of the content on social media relating to dementia. Nonetheless, it has certainly highlighted to me how misunderstood the disease can be.

A few days ago, a colleague and I were chatting about the Ryan Gosling movie ‘The Notebook’. Previous to my work in care this was the only time I had really come across dementia. If you’re not familiar with the movie, the basic premise is that an elderly lady, Allie, lives in a care facility and is depicted as having complete memory loss of her past. She is visited daily by her optimistic husband (Ryan Gosling’s character) who recounts their life story every visit, hoping it will restore her memory or “bring her back”, even for a moment. Sometimes she remembers everything, other times Gosling’s character leads Allie to feel angry, confused, agitated and upset until the point care staff dramatically intervene. The movie largely focuses on their youth and how their love story plays out.

The type of dementia is never defined in the movie so it’s hard to theorise over accuracy of the portrayal. Nonetheless, despite some questionable scenes I think the dramatisation captures many things well. Certainly, the reality of care work where on a daily basis health workers deal with a full range of emotions and/or behaviour challenges that can change at a drop of a pin. It requires a real adaptability to work in this profession. I also like how the movie portrayed the array of emotions Ally feels and how this contributes to her agitation and confusion. It is often difficult to know how it might feel to live with dementia and I thought this aspect of the dramatisation gives some useful insight into how emotions remain prevalent. We also see the effect it has on the whole family as Ally is portrayed as unable to recognise any of her immediate family; a bittersweet nod to the fact that dementia can be so devastating to many connected to the individual.

What I was a little stumped by was the scene where Ally is sedated via an injection. It would be quite unusual to come across a scene in an elderly care facility where an individual is being sedated so dramatically and in this way. I suspect the purpose of this scene was to add dramatic effect for entertainment purposes. So is the movie inaccurate? Not necessarily but it certainly does not represent all experiences of dementia…

Since acquiring my own experience in dementia care I can look back on this film now and confidently say that a diagnosis of dementia does not necessarily equate to the same experience. The first revelation I had in this profession is understanding dementia as an impairment which can range from the minor to the very extreme.  That is, not everyone has memory problems to the same degree. Having dementia does not necessarily mean you’ll fail to recognise the people around you.

What you might be surprised to know is that there are actually over 200 subtypes of dementia. That is, dementia is actually an umbrella term to describe a range of progressive conditions effecting the brain. 200 variations is quite a lot don’t you think? The most widely known one is Alzheimer’s Disease. So, yes, in essence, Alzheimer’s Disease IS dementia. A type of it anyway. With me so far?

When trying to understand dementia the best thing to keep in mind is how it is progressive and is a disease of the brain. Our brain controls all aspects of ourselves does it not? You may find it useful to take a minute to think about some of the things that might occur should your own brain not be functioning properly. What might happen if your brain couldn’t communicate to other parts of the body that you needed to use the toilet? 

Dementia is a progressive disease but the rate of progression is still rather unclear. Some individuals deteriorate very rapidly, while others could seemingly remain in a similar state of the disease for years. This is a complex area for me to explore but you may find it useful to look up specific information pertaining to a type of dementia should you wish to know more.

What you might be surprised to know is that there are types of dementia that hardly effect the memory at all. A rarer form but well documented is frontotemporal dementia. In this type of dementia, it specifically effects the part of our brain that contributes toward behaviour, personality and language. If you encountered someone with this type of dementia, you might not even realise it. What you might notice is a loss of a “filter”. That is, an individual with frontotemporal dementia could say quite hurtful or socially inappropriate things. On the flipside, they may also display behaviours you find quite humorous through their ability to “tell it how it is” or make quite naughty promiscuous remarks. Remember though, this is just ONE form of the disease out of over 200 variations.

With this in mind, I suppose what I would like you to take from my writing is that a diagnosis of dementia does not necessarily mean the individual will forget everything and everyone. In my personal experience my encounters with those living with dementia are seldom focused on restoring memory but rather about enabling the individual to gain back some of their individuality and control. In a music therapy capacity, I have worked with some individuals with very severe memory loss and cognitive impairment, yet at the essence of our sessions have been improvisation with percussion instruments and co-creation of our own songs. Sometimes familiar songs may feature but I would say these are bridges to further free improvisation, rather than a perceived limitation of working with someone with dementia.

While there is certainly a very welcome place in dementia for familiar music, work in this setting is no way limited to reminiscing about their young adult years. What has surprised me when working with older adults is how much interest they have in contemporary culture. On more than one occasion I have discussed my own favourite music and played examples, even initially surprised how many contemporary artists are known to them. One individual I used to see regularly knew a fair bit about Britney Spears and had even heard of Ariana Grande. They could also remember all the artists from the 70s and 80s their daughter used to listen to, such as Madonna, The Carpenters, Prince and Whitney Houston. So is dementia really about forgetting?

This is a tricky one to answer but I do think we can be presumptuous as a society assuming dementia solely equates to loss of identity and lack of memory. Nonetheless, forgetting certainly can be a major element and where dementia progresses to more advanced stages it can be sad and often dehumanising seeing individuals become unable to carry out basic everyday tasks. Furthermore, there are most definitely many other examples of dementia that present very differently, such as where individuals lose speech and language ability. If you have ever visited a care facility you may have encountered individuals that seem to just walk and walk, chatting to themselves about things that seem out of correlation with the present. I often ask myself, how would I feel if that was my parent or partner?

Dementia is indeed a very cruel condition but at the same time I hope through this post you are able to see that it’s a rather complex condition that doesn’t always have a clear or set outcome.

Sometimes people ask me for advice on how to cope with a loved one with dementia. It is hard to give generic advice when everyone will have such unique circumstances and concerns. All I can say from my experience in dementia care is to focus on what your loved one CAN do rather than what they can’t. I often find it is more useful to keep in mind that you can create new memories rather than focusing on the past. Maybe your loved one can’t remember the family photographs you have tried to show them but they can have a coffee and a laugh at funny cat photos with you. Sometimes eliminating that pressure to “remember” is often far more beneficial.

I also believe the great thing about music is that it can promote a connection. I see so many family members struggle to talk to their loved ones yet they come to a concert or a group singing activity and it becomes something they enjoy together. If your loved one is in a far more advanced stage of dementia there are ways to improve their quality of life through health specialists such as music therapists. They may also be susceptible to sensory resources specifically adapted for those living with dementia.

As the nature of this article has suggested, the scope of dementia is too big to be able to give specific advice to everyone. If you have been touched by this article or have any comments or questions, do feel free to get in touch.

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