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The gift of living well

“God gave us the gift of life; it is up to us to give ourselves the gift of living well.”
Voltaire
“And so my friends we’ll say goodnight, for time has claimed its prize, but tonight will always last, as long as we keep alive memories of paradise” – Styx
Conversation with nan in the lead up to the chat:
Me: Do you think you have a good quality of life?
Nan: “yes definitely”
Me: “do you think you live well with dementia?”
Nan: “yes”
Me: “why is that?”
Nan: “because of the way i feel, i feel quite happy and content”
Me: “what do you think contributes to that”
Nan: “You’re the biggest thing-so helpful and thoughtful…if I have anything i want to get straight i ask you because i know i’ll get a proper answer from you not some made up thing. I get the truth”
Me: “do you think its important to carry on doing things you love with dementia?”
Nan: “definitely if u didnt have things to do or people to talk to you would go downhill very fast”Living well with dementia:

Our most recent #diversealz chat on Twitter was concerning living well with dementia. And this week we had a special VIP guest. My nan. I thought, who better to ask about how to live well with dementia, than the woman sitting next to me? My first question to nan was do you think you live well with dementia. I replied, so why is that? What contributes to it? Nan gave me a massive grin and said “well that’s easy. You”. Which was lovely of course but not really an answer I was looking for, I was kind of hoping for things we could give other people. I’m not sure how far I could stretch!

My initial point was that we shouldn’t be having to have this discussion. Living well with dementia is something that should be public knowledge, from those who are the “experts” given to those of us who experience it and its effects day to day. It’s a shame that despite so many people being diagnosed with dementia, the public still have no idea what it really is, or how they can help someone with dementia.

Many people can live well with dementia, for as long as it allows, just like any other illness. Some think that as soon as a person is diagnosed, the person has changed, wrong! They are still the same person, still love, hurt, remember, not always memories, but feelings & want to live well.

What does it mean to live well with dementia?

It means helping our loved ones lead a fulfilled, independent, stress free life even with dementia
The best way to find this out, is to talk to and listen to people with dementia. On what they want! Otherwise it helps to have a carer who knows the caree well and can understand their wishes, even when the caree cannot express them.
Living well with dementia is adapting to their needs, yet maintaining a sense of normality.

What are some of the ways people can live well with dementia?

People can live well with dementia with the right amount of help and support from others, in order to live as independently as possible, or as much as they want to. It was also pointed out that some may not wish to live independently, and may thrive in group situations. Nan thinks it depends on the people around the caree, on if they can live well w/dementia, says they have to be helpful & understanding.

By not letting dementia define who a person is. Who you are. See the person, not the condition.
Keeping safe and happy is a key factor, joy and laughter, stimulation. Still doing those things you enjoy.
Communication is key. Everyone has a part to play and it is everyone’s responsibility.
Keeping busy by doing different things to keep mind active. And also keeping physically active.
Keep things interesting, safety, security, happiness, independence, activity, perceived normality
Life story projects can boost confidence and creativity, giving a platform for communication
There are quite a few from sensory environments and music to iPads and tablets, all can help
I’ve heard games (especially chess), music (especially piano) and maths use brain in helpful way

How important is a can do attitude?

Nan says she fights things, so she tries not to, let it get her down. I think that helps. She says she doesn’t believe in feeling sorry for yourself, you’ve got to fight it. You can be happier if you fought than give up”.

Do you think its important for people to have a role?
We all agreed, as we have in the past that having a role, a part to play, something to focus on is helpful in living well. Not only for someone who has dementia but for all of us. It can help maintain our self esteem. Using past experiences, memories and roles can help. We heard stories about people who were gardeners, watch makers, cooks, nurses who all took back these roles and so were able to live well with dementia. For nan, she always seems “better” when she is able to take on a nurturing role, looking after me, or the cat.

At the end of day, is living well synonymous with enjoying your life or having a decent quality of life?
Nan says that we want all of these things from life. And she feels lucky that she has them all. She says that the most important thing is to live life and enjoy it, even if things are wrong with you, get above it. That gives you quality of life. I agree, in order to have a good quality of life, you have to live well. And if you live well, it’s more likely that you will enjoy life. Whether you have dementia or not.Do we need to see examples of people living well with dementia whatever that means?

Yes! This is essential to end stigma. There are people with dementia who are changing perceptions of dementia, in a really huge way. Kate Swaffer and Norman McNamara are just two such examples. They show us you can live well with dementia and I think we need to see more of this so the public become less scared of it, and can approach it better. Kate says she has learned a lot about life since she was diagnosed, and in some ways it has become a gift. And nan has taught me so much about life, and her diagnosis has taught me as much about myself, as it has about nan, and the outside world that I think others need to be more open about it. It is possible to live well with dementia, and we don’t need to be scared anymore.

Reading material:

Christine Bryden – http://www.christinebryden.com/
Still Alice.
Look up the University of Tasmania MOOC Understanding Dementia free online course.
communication group – http://www.sonasapc.ie/
http://www.lshtm.ac.uk/newsevents/news/2013/dementia_care_project.html …

Parting words from Nan:

“Make the most of your life and don’t get depressed at all. Try & live a good life by doing the best you can”

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