You can live well with dementia

Living well with dementia is often a difficult concept to grasp when it can be a devastating experience for a family, as evidenced in the new Alzheimer’s Society’s TV advert The Long Goodbye. Twenty years of a life dedicated to promoting cultural inclusion in dementia care through education and research, I wanted to share my personal views on this. Before doing so, I provide the following disclaimer:

Whilst I am an Ambassador for Alzheimer’s Society, I was not involved in the creation of this advert. This post is based on my professional and personal experiences of dementia and all views are my own. 

There is no doubt that dementia can feel devasting for family members who feel like they are losing their loved one slowly over time. However, in my experience, this devastation comes as a result of a lack of understanding about dementia. I was once the person in this advert – devasted as I lost my father one piece at a time. I reached out for help but there was nothing suitable – he was too far gone, and by the time I had educated myself, it was too late. He had passed.

I still often think “had I have known then, what I know now, I would have reacted differently.” This instilled in me a desire to educate others so that they don’t have to go through what I did. As I came to learn of the work of Professor Tom Kitwood and what it means to maintain ‘Personhood,’ I quickly realised dementia is not the death that leaves the body behind and the crucial role that everyone has in helping a person to live well with the condition as Christine Bryden once wrote:

“As we become more emotional and less cognitive, it’s the way you talk to us, not what you say, that we will remember.  We know the feeling, but don’t know the plot.  Your smile, your laugh and your touch are what we will connect with.  Empathy heals.  Just love us as we are.  We’re still here, in emotion and spirit, if only you could find us.”

  Bryden, C (2005). Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley: London.

Dementia is a disorder of the brain which means that for some, logic and language get confused resulting in behaviours that are different, and often challenging to others. Family members, carers and healthcare professionals therefore need the correct tools in place to help them navigate some of these challenges. Tools that support them to connect and communicate with their loved one, bringing back purpose and a sense of identity:

“How you relate to us has a big impact on the course of the disease.  You can restore our personhood and give us a sense of being needed and valued.  There is a Zulu saying that is very true. “A person is a person through others”.  Give us reassurance, hugs, support, a meaning in life.” 

  Bryden, C (2005). Dancing with Dementia: My Story of Living Positively with Dementia. Jessica Kingsley: London.

It is important to show the challenges for people – but as a training tool – to motivate them to care more, to do more. As part of the ADAPT study, we produced Kiran – a Royal Television Society Award winning short film which shows the consequences of a young south Asian woman caring for her mother with dementia with no support from family, friends, and services. The purpose of this film is to highlight the real events and circumstances for people who are unsupported by services and to encourage organisations and healthcare professionals to do more for those who experience unequitable access to services.

In my view – if a family ends up in the scenario of The Long Goodbye, then they were not supported. This was a missed opportunity to show how through “help and hope” such challenges can be managed. For example, with the use of therapeutic interventions such as life story and reminiscence work, music and even dance therapy. There is boundless evidence available which demonstrates the power of such interventions to support people to live well with dementia. People with dementia, just like the rest of us, have a need for social engagement, connection with others and doing things that make them smile and laugh!

A person may not present the same as they did pre-diagnosis, but it doesn’t mean that they don’t have the ability to learn new skills. Whilst logic, language and memory get confused, their creativity remains intact – and it is through such creativity, that their personhood is maintained. The only downside for them is that as the disease progresses, it relies on others to make this happen for them. How are families supposed to do this if 1) they have not been educated about dementia 2) they are not given the tools they require and 3) there is no meaningful support available. Just as my own personal experiences demonstrated, without these three things, you are left with feelings of pain and loss.

Therefore…

This advert should not be an advert but, rather a training tool for organisations and healthcare professionals to show them what happens when a family does not receive the correct support. This is a short film about the devastating end that people experience when there is no help and there is no hope. There are thousands of families out there still living in turmoil and we must do better to support them, we must speak up and help organisations to see the ME in deMEntia.

I have met and worked with some wonderful, inspiring people living with dementia over the years. Bhagwant being one of them who as part of Dementia Action Week in 2022 produced this beautiful film funded by Alzheimer’s Society to help defeat the stigma of dementia in south Asian communities and show that through social engagement and therapeutic activity, you can live well.

Thank you, all of you for inspiring me, you are amazing people – making an important difference to this world and I thank you for allowing me to be a part of that journey.

I write this post for you, and the entire dementia community and pledge that I will continue to educate, learn, and give hope to those affected by dementia. This includes raising awareness to organisations, healthcare professionals and the public that, you can live well with dementia.

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