Towards a better future for people with dementia

by Hilary Doxford

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So – what does a good #socialcarefuture mean for me and other people with dementia? As the World Dementia Council said, ‘we can retreat from the challenges of dementia or get on and defeat this disease. Retreating is not an option. Let’s get on with defeating it and until that day, making lives better’.

For people with dementia, in the absence of a cure or medical intervention, making our lives better means our ‘treatment’ is good and appropriate care and support.

What needs to change?

In thinking about a better future I start by thinking of the present that many people with dementia face:

  • Too many people don’t treat us as people but as commodities to be dressed, sat in a chair, have the TV programme selected, fed and then put back to bed at the end of the day. Is that living? It is important that care improves lives and does not just extend ‘existence’.
  • What saddens me the most is the loneliness and isolation the current system unnecessarily inflicts on many lovely and brave people. They exist and that is it. It is not right, it is not fair and if we call ourselves humane we need to change things now. Every new day, many people experience another day of misery. That is not what life is about. I was recently in hospital, in the bed next to me was an elderly lady who had no visitor all week. I woke in the night to hear her praying. She prayed for the doctors, the nurses, the other patients, those suffering in the world, those who are lonely and then she prayed for God to take her life or if not to give her strength as she could not see a way of coping once she went home. It was heart breaking. I cried, but crying doesn’t solve anything and I took an action which I hope helped.
  • In the corridors of power, there are those who talk of change, and talk and talk and talk …. Too afraid or just incapable of making it happen. Well they are not paid to just talk, they are paid to make and take tough decisions, we need action and it is needed now. Sadly it appears there are not enough who are capable of making change happen. I know our social care system needs a radical overhaul, it is unjust, unfair and not fit for purpose. I am talking about the system, not the myriad of wonderful people doing their best in a system that seems determined to stifle any initiative or creativity.
  • I also frequently hear the results of research studies that dramatically improve lives. Too often they go no further. Funders must ensure that there are plans for implementation of success.
  • Rules and regulations constrain and stifle creativity and initiative, because of risk averseness, the balance is out of kilter. I do not like the ‘nanny’ state, but we have to look at ourselves as well as the government for why things are going so wrong. Money for nothing rather than money for genuine need seems to be the order of today.

A better future is possible and some of it is happening now

My vision of social care is a care system that is enabling not disabling. What I like is the growing recognition that dementia care is not about ‘doing for’, but providing the tools and help to assist people to continue to do as much as they can for themselves, whether in a home or at home. As one of my friends said ‘care is not being dumped in a day care centre or home, care is inclusion in society’. If we are not encouraged to keep going we decline more quickly, you can kill with kindness and boredom.

A good future means listening to the people on the ground, they are not theorists and not just talkers, they are the experts with the experience and knowledge to make a difference. I frequently see pockets of excellence. I have been in dementia care homes where the residents smile and are engaged. The happy homes are not happy because they have more funding, they are happy because of the people and their initiative. I have seen many things that really work, such as indoor gardens, pets allowed, memory rooms, interactive technology use, community activities in care homes and just recently the active encouragement of the inclusion of children in daily lives. Simple things that make a difference but some I know were an uphill struggle for care homes to implement. How do we share these to make lives better and get them incorporated into mainstream practices?

All credit to the Alzheimer’s Society, who this year changed their Dementia Awareness Week to Dementia Action Week recognising more than words are needed. I am part of a growing group called the 3 Nations Dementia Working Group . We are a friendly group of people diagnosed with dementia who want to make a difference whilst we still can, working by, with and for people with dementia. We are currently a small group with big ambitions and welcome new members with a diagnosis of dementia to add their voice and ideas to ours. We bring the lived experience with our personal knowledge of dementia that people value whether in a professional or non-professional capacity. As such our aim is to become the ‘go to’ group within the three nations (of England, Northern Ireland and Wales) for anyone seeking input from people with dementia.

Some will recall a TV sitcom called the Likely Lads and their theme tune included these words

Tomorrow’s almost over
Today went by so fast
The only thing to look forward to is the past.

When I was diagnosed I felt the only thing to look forward to was the past. My future still isn’t looking rosy, but I am lucky, I have a caring husband but there are thousands of people today in despair and crisis with no quality in their lives. I think my key thought is whilst we agitate for change, as individuals we can make differences that will make lives more bearable and happier today and if we share those we will make a difference where it matters.

 

 

Hilary Doxford is a founder member of the 3 Nations Dementia Working Group and member of the World Dementia Council

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