“Power is knowledge, knowledge is power!” Viewpoint from Chris Roberts

Do read this piece by Chris Roberts who, like me, has mixed dementia and is a dementia friends champion, working to raise awareness and influence change do that people can live well with dementia.

Dementia Carer Voices

This week we are delighted to be able to share Chris Roberts’ Viewpoint piece. Chris has kindly written for us once before, and we’re so pleased to be able to share an update on the wonderful work he’s doing with Dementia Alliance International. Thank you Chris!

I’m your average 53 year old man who cares about dementia awareness, but it has to be goodChris Roberts quality awareness, it has to be about promoting education about dementia because it is starting to touch us all, everyone is beginning to hear the word ‘dementia’ but not a lot of folk actually understand it and with over 850,000 people living with this illness in the UK we all need to know at least a little about it.

Power is knowledge, knowledge is power !

Firstly you can’t catch dementia, it’s a syndrome, a set of symptoms peculiar to any brain disease or injury, the…

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Sundowning or boredom?

Live well, be active, take part…and then sleep well. Great short reminder from Kate Swaffer.

Creating life with words: Inspiration, love and truth

shhhSleeping until the sun sets

Wondering why it is night time

When he wakes up

The internal clock back to front

And inside out

Sun-downing for much of the day

Awake all night

So let us

Clash the symbols

Dance more often

Sing loudly

Cook and eat together

Anything to stay awake

No more sitting in an armchair

Nor allowed to nod off

But living a normal life during the day

So that all of us

Can sleep at night

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Dementia friendly Ellesmere

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I want my town to be the first dementia friendly town in Shropshire.

Yesterday I visited almost every shop and business on the main streets and invited them to join our Shropshire Dementia Action Alliance. I asked them to come to a dementia friends session next week. I talked briefly about what being dementia friendly is about.

The Alzheimers Society Dementia Bus came to Tesco for the day as well, and lots of people dropped in to talk about dementia, most touched by the disease in some way.

And I realised that actually most shops and business people in Ellesmere are already dementia friendly. So, as one shopkeeper whose activity is not unrelated to baking might have said, “It should be a piece of cake.”

They’re a friendly lot, our shop keepers. They smile a lot, and pass the time of day. They use your name if they know you. Many have chairs and are happy for you to sit down for a while.

One of the bank managers said they offer payment cards that don’t use PIN numbers if customers really can’t remember. And he said he’d come to my friends session next week. (Win.)

Several sole trader shopkeepers said they’d come to a session at 5.00 after work, so I said I’d organise that.

A pub readily offered me the use of their function room free for training sessions. The new owners want to support community activity…wonderful.

An estate agent shop had a lovely warm, friendly and light feeling, where I knew straightaway anyone who needed a little time or understanding would be made welcome and invited to sit and chat.

A pharmacy was dead keen to start a purple angel information and chat drop in activity in the shop. (Win.)

They’re doing it already. What’s good for business is good for people with dementia. What works for a person without dementia workers for one with it.

Yes, there are a few add-ons which we can suggest.

Like the bank publicising its PINless cards, rather than waiting for people to have a problem and come to them.

Like a person selling a house avoiding where possible talking just to the carer or friend across the owner with dementia, or confusion, or anxiety.

Like helping a person who has forgotten their purpose to retrace their steps that day so they pick up the thread they lost a few minutes ago.

Like allowing silences, waiting for the customer to gather their thoughts, not filling gaps.

Like not sitting behind desks in uniform business suits with unsmiling faces that look quite hostile to some. (Do you dare to interrupt me? Or sit at my desk?)

It’s really interesting going into all the shops on one day. Which would I go back to? Which are welcoming? Which are friendly?

Well, I know which I think will still be in business in ten years.

And I know which will be less used by people with confusion and anxiety, with cognitive impairment or dementia. So it’s their loss.

But of course it’s ours too. Because people with dementia lose their confidence if they are not welcomed in our dementia friendly ways when they are out in the community. And they stay at home and lose touch, lose more cognitive ability, become frail…

That’s why I want Ellesmere to be the first dementia friendly town in Shropshire.

And we will be.

Guest blog by Dr Judy Galvin on living alone with dementia

People with dementia who live alone… It’s harder for them.

Creating life with words: Inspiration, love and truth

Today I am publishing a guest blog, written by a woman I am honoured to know, and whom I often feel in awe of. Judy has given me permission to share her story of living alone with dementia of the Alzheimer’s type. My blog title uses the word dementia, as her story applies to anyone living alone with any type of dementia. There are a significant number of people with dementia living alone, and as she rightly says, currently they do not have much of a voice. The other group with no voice, are the children of people with younger onset dementia, like my sons. Hopefully, the advocacy of many around the world will start to change this, and I hope this story is shared by many. Thank you Judy, for your support, friendship, and for the privilege of allowing me to share your story here. We work together on the…

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