Being in the moment with “people living with dementia”

Dementia has replaced cancer as the disease we’d prefer not to talk about, but as life expectancy increases, the number of people with dementia is increasing too.

Next week 15th – 22nd May is Dementia Awareness Week and the Alzheimer’s Society is asking all of us to unite against dementia.

I wanted to reflect on my learning about working with people with dementia in the seven years I have been working with MAECare

I had personal experience through my Nana, of vascular dementia, I had never met anyone else except in passing who was living with dementia. It was immediately confirmed to me what I had learnt from Tom Kittwood, an academic who researches dementia issues, if you have met one person with dementia you have met one person with dementia. Everyone is different and we shouldn’t generalise from one person’s experience.

The development of dementia has been described as a journey from the mind to the heart and that seems to be an important value to keep in place. Emotions remain in place even when memory has gone. I have learnt that so many times, as people tell us how much they have enjoyed their time at a MAECare event, even though the next day they don’t remember being there. Family tell us that their relative is more animated and lively because they are going out and meeting people.

The greatest danger I have observed is that those around someone with dementia especially family and friends make the mistake of confusing not remembering with not enjoying something. They say oh there’s no point we take them out and they don’t remember.

People living with dementia teach us to be “in the moment” we can clearly see they are enjoying singing, talking to people sharing memories, like everyone that enjoyment and sense of well- being remains long after the memory fades.

We can enjoy those moments with people and treat them with the same respect and consideration that we treat all the people we work with.

Christine Byrne , who has early onset dementia remarks I may not always remember who you are, but I always remember how you made me feel.

Carol Burns Project Manager

For more information about how MAECare supports people with dementia – see the rest of our website.

For more information about dementia about dementia see https://www.alzheimers.org.uk/