How Does your World change with Dementia?
Understanding dementia is difficult. For those not affected by the disease it is very hard to identify with the changes in a dementia world. Recently, a wonderful lady called Wendy Mitchell (diagnosed with early onset dementia in 2014) came to Hexham to talk to a few people to try to explain the disease and its impact upon your life.
She came up with a light bulb moment for many of us!
Wendy Mitchell at Hexham Book Festival 2019 - her autobiographical book 'Someone I used to Know' - is well worth a read.
She compares the feelings of living with dementia - to being in a car for the first time - in your first driving lesson on the road - that constant need for absolute concentration with everything you do! You can do it – but it takes continual effort and focus! You get tired and you can never relax, settling down and coasting on cruise control is not an option!
You can live well with dementia but it takes its toll as you are forced to negotiate a very different world. Dementia is indiscriminate and affects everyone differently – so it is impossible to plot the changes that may occur, but it is handy to beware of the potential changes that a person with dementia may experience.
Dementia can affect memory, communication, movement, learned behaviours etc - so simple, familiar things can become very challenging – for example - you may have wardrobes in your bedroom - but as vision and interpretation change so does the ability to remember - what's behind the wardrobe doors – so you may not be able to find your clothes - but simply because you may have forgotten they are behind the doors. Similarly the white kitchen cupboard doors are no longer obvious and if you can see them there is no memory of what is behind them - so trying to find the things you need to make a cup of tea becomes very difficult.
Vision can alter –so patterned floors, walls, table cloths etc can look as though they are moving, hearing can be affected as certain pitches cause physical pain, and emotional responses can become very heightened.
Living in an altered world like this - can be very challenging.
Wendy also explained in a very visual way - how she sees her memory in the light of her diagnosis.
She imagines her memory as a string of constantly lit fairy lights - with each light representing a skill or ability – however as the disease progresses it forces these lights to flicker on and off – it never has the same pattern twice, it is never predictable but eventually it will lead to the light going out - and the skill being lost.
This explains why someone with dementia may be able to complete a complicated task easily one minute and 10 minutes later they are unable to do the same thing - but who knows - they may be able to do it tomorrow?
The unenlightened may interpret that as awkwardness - but with a little more understanding it can so simply be explained and our response adjusted.
So can you begin to imagine what it is like to live in this world?
People diagnosed with dementia are brave!
However, they don't want pity - they want to remain an active family member - both in the home and in the wider community - and with both understanding and a little support from those around them - they will be able to actively engage for a much longer length of time.
What they want has been voiced through the Alzheimer's Society - and they ask us all to:
1. Talk to me – don’t be worried about talking to me – I’m still me!
2. Listen to me – Take time to listen and involve me in the conversation.
3. Include me – Keep on inviting me out – friends are still very important to me.
4. Ask if I need help – if I seem confused ask if I need help – these little things make me stay independent.
5. Be patient – And I’ll show you how I can still do things – it may just take me a bit longer than it used to.
6. Ask me about dementia – Don’t be afraid to ask me questions. When you take the time to understand my dementia, I know there is someone on my side.
7. Help my carer too – Support my partner and others who care for me. My dementia affects them too.
Too often after diagnosis both the individual and their family tend to jump to the end of the journey - but with a little appropriate support - Wendy says "life is still worth living".
I have been a Side by Side volunteer with the Alzheimer's Society and seen first hand the positive benefits of supporting those with dementia.
(Ann and Jane)