Dementia: it’s time to talk

By Vanessa Chance

September is World Alzheimer’s Month and its time to talk about dementia.

Some key facts on dementia:

  • Today, there are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025
  • One in three people born in the UK this year will develop dementia in their lifetime
  • Right now, 38% of the population have a family member or close friend who is living with dementia

This has huge implications for the way we live and work. As yet, there is no cure and as a disease it is still widely misunderstood.

At a recent event with Insurance United Against Dementia, I was lucky enough to meet some amazing people living with dementia. They had jobs, they travelled and maintained a wide network of family and friends. This is not the case for all those who have the disease but it does show that you can live well with it.

As communications professionals, I believe we need to take care when discussing dementia. Until I had met these incredible human beings, I had often talked about dementia ‘sufferers’ or ‘victims’. I hadn’t meant this unkindly, having lost my own mother to this cruel disease, but what I have come to realise now is that this reinforces a negative stereotype. The Alzheimer’s Society encourages people to talk about ‘living with the disease’, rather than ‘suffering’ and to focus on the person, rather than the dementia.

One common misperception is that those who have dementia are demented or crazy. A few years ago, a friend posted a Christmas card on social media about an elderly relative ‘taking a shine’ to the turkey because he had Alzheimer’s. Lots of people liked the post and thought it was funny, but for anyone who had a loved one with the disease, it was upsetting and offensive. There was less awareness about Alzheimer’s then and I know this person would have had no idea how their post could have been badly received.

Similarly, it is well-known that dementia affects memory and too often people joke about having early onset dementia because they have forgotten something. I am always shocked by this, it’s akin to joking about having cancer because some of your hair has fallen out. Its completely unacceptable.

But we do need to talk about dementia.

Right now, 38% of our customers, colleagues and friends will have a loved one who is living with dementia. There are many forms of the disease and it affects people in different ways. Even if you know someone with dementia, the way it affects them may be completely different to the next person.

Similarly, the level of independence they will have and the care they may need will vary greatly. When supporting colleagues and friends who have a loved one with dementia, its important to remember that the practical and emotional impact it has on them will also differ.

Becoming a Dementia Friend helped me understand more about it and I would encourage everyone to do it. Even if you don’t know anyone with the disease, it is likely you will do soon and you will certainly have people in your life who do. There is more info at the bottom of this blog.

It’s been a long time since that Christmas turkey joke but it just goes to show how easy it is to offend someone without meaning to.

Here are some small ways you can help:

  • Become a Dementia Friend. This involves attending a free session or watching an online video where you learn more about dementia and small ways you can help. More info here: https://www.dementiafriends.org.uk/
  • Host a Dementia Friends session in your workplace if there are 10 or more of you. More info here: https://www.dementiafriends.org.uk/WEBArticle?page=about-partner-organisations#.XXEvii5KiCg
  • Spend time with someone who is living with dementia. Dementia can make people feel isolated and lonely. Taking time to have a cup of tea and a chat with someone who is living with dementia will really help them. They may forget it, but the emotional memory will last.
  • Talk to colleagues and friends who have loved ones living with dementia. It can be devastating to see a loved one deteriorate, especially if they don’t always remember who you are. Over time, this can really take its toll, showing your colleagues and friends that you care enough to listen, will go some way to alleviate this.
  • Volunteer for one of the charities that supports those living with dementia and their loved ones or funds dementia research. There are many opportunities at https://do-it.org/
  • Follow the charities on their social media feeds and help amplify the educational message.

And if you can, please help raise funds for the Alzheimer’s charities. The Alzheimer’s Society runs ‘Memory Walks’ all over the country, more info here: https://www.memorywalk.org.uk/ Their main website is here: https://www.alzheimers.org.uk/ Other charities include Alzheimer’s Research UK: https://www.alzheimersresearchuk.org/ and Dementia UK https://www.dementiauk.org/

All statistics quoted are from the Alzheimer’s Society.

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