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Dementia - Living Well, or Living Hell?

We all go through a period of adjustment after our diagnosis.

We pass through stages of fright and despair, self-pity, and anger.

But, sooner or later, there are decisions to make. So we need to ask ourselves one fundamental question...

How can I live the best life I can in the time remaining to me?

You can, of course, avoid the question, but you'll drift along in one of the "why me?", "It's not fair" bubbles of anger, despair or self-pity that I mentioned earlier.

That's the easy option.

But the clock is ticking, and every single day wasted in introspection is a day lost when you could be enjoying life by doing something fulfilling.

So I decided to try and compile a list of some of the things you can do to turn your journey into dementia from a living hell to living well.

Here are a few suggestions that might help...

  • Eating, sleeping and exercising: Basic but essential to get these sorted. The bedrock of wellbeing. These three things go hand-in-hand, and exercise is often the key to unlocking the benefits of the other two. You don't have to run marathons to improve your fitness (although I envy those who can). You simply have to do your best to stretch yourself within your capabilities.

  • Socialising: There are many opportunities to meet with others living with dementia available locally, nationally and internationally. You can meet people both in person and online. What are your hobbies and interests? Is there anything you've always wanted to try but never got around to? Now's the time to look for evening classes, courses or interest groups. Local history? Volunteering? Faith groups? Campaigning? All of these things and more can be very worthwhile and fun. And let's not forget dementia peer groups, where we chat together and form lasting friendships, Singing for the Brain and many other special interest groups for people with dementia.

  • Campaigning: There's much more to be done to make the world better for people with dementia. Your lived experience makes you a valuable asset and gives you a strong voice that can influence change - use it! Contact a dementia charity and offer your services in any capacity you feel you can manage. Or, contact your local NHS Trust or dementia services provider and see what participation opportunities they have to offer.

  • Research: Get involved in research. Don't expect anyone to cure your dementia - that's not going to happen. But you can help others by participating in studies that will add to the store of knowledge that may one day provide a cure. Research is not just about clinical trials. It might consist of a questionnaire, an interview or any number of other things.

Most importantly, living well is about changing your attitude.

It isn't easy, and it is never 100% successful. Every now and then, something happens to upset the apple cart, but you have to learn to pick yourself up and move on.

The alternative is not acceptable.

I realise that my outlook and philosophy may seem smug or trite to some, but it seriously works for me. And the more you practise, the easier it gets to maintain a positive outlook, and I genuinely want to encourage as many of my fellow travellers as possible to adopt a "can-do" attitude to their dementia.

I've met some wonderful, inspiring people since I started reaching out, and some of them have become friends.

I thank my lucky stars. I decided to live well with dementia. I'd love to hear your comments.

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Well wrote Peter this is what i have done on my journey and look at me now

Peter Middleton
Peter Middleton
Aug 15, 2023
Replying to

You have your photo looking down on Wembley Way..


You are awesome my friend.


Aug 13, 2023

Research? I do a lot more than any of that; I co write funding application, think of question, do the interview, analyse the data and help write the Paper. Also on SIGN, Scottish NICE, helped write Scottish Dementia Strategy, edit Treatment Guidelines. Chair of international DAI committee.

My neurologist says all this has definitely slowed down my decline. Good enough for me "Catnip to the brain".

Peter Middleton
Peter Middleton
Aug 13, 2023
Replying to

Great stuff Martin!

More power to your elbow.

Thanks for sharing the great work you're doing.

It's inspirational.

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