People with dementia have a voice. But, says blogger Wendy Mitchell, the three episodes of Dementiaville failed to show the perspective of anyone living with dementia.
What a rollercoaster of emotions Dementiaville has created in me, a person living with dementia. Elation at the first episode which highlighted happiness and adapting to the world of people with dementia, through to agitation, frustration and sadness in the following episodes.
I was hoping to see the challenges faced by people with dementia and their carers, and how professionals supported them to face challenges and turn them into positive experiences.
I was expecting to hear from people living with dementia about what they liked, how they wanted to be treated, their thoughts on what their care was like. That one question, “Do you like it here?” could have generated so many otherwise unheard perspectives from those most affected by dementia. I don’t remember seeing any views being sought from anyone with dementia and this made me sad; I’d hate to be excluded and ignored.
The methods used were described as a ‘radical approach’. I didn’t see what was ‘radical’ – to me, it was simply compassionate and logical and how I would want people around me to behave.
A contentious statement I know, but I have to say it: seeing how carers behave towards people with dementia often makes me uneasy. Their devotion was unquestionable but no-one gives carers a handbook. ‘Needing training’ to look after a loved one is a difficult concept to digest and accept but dementia is a complex disease so why wouldn’t you need training? Training should not just be available for care professionals but for all family members as well. Something as simple as encouraging the woman who loved cooking to stir the food in the saucepan instead of no longer allowing her into the kitchen seems so logical.
My GP asked me, “Why would you want a diagnosis?” I wanted a diagnosis to put an end to the uncertainty and give me the ability to start focussing on what I could do. Early diagnosis offers you the opportunity to talk to your loved ones about what you want and develop strategies to give all those around you a more positive experience.
There’s such a need in the early stages to develop strategies and seek help on how to enable the person with dementia to remain as connected, involved and independent in any way, no matter how small.
There’s a need for far more awareness, guidance and continual support and training – this would develop a more positive experience for people living with dementia and their families around them.
People with dementia do have a voice. You, the reader, have a role to ask people with dementia their views, to listen carefully to the answers given and to take action based on those views. I believe this will lead to a more effective and positive partnership between people with dementia, professionals and their loved ones.