Currently there are over 800,000 people with dementia in the UK, and over 35 million people worldwide. For me the greatest voice in dementia awareness, education, policy and implementation in 2013 must be theirs, their families and carers past and present – people with first-hand experience of what dementia is really like and what is really needed to improve the lives of those who are living with it.
As someone whose dad had dementia for 19 years and who sadly lost him to it in 2012, here is my dementia wish list for 2013:
(In no particular order)
1) Dignity and respect for all
It costs nothing and must be the foundation of all aspects of dementia care.
People with dementia are still people, with thoughts, feelings, emotions and sensitivities. Understanding what living in their world involves is vital to improving their quality of life.
Treat each person as an individual and tailor their care to them. Appreciate their past, support their present and help to make their future the best it can be.
Kindness costs nothing and yet changes so much, not just for the person who is being shown compassion but for the person giving it. What is good for people with dementia is good for all of us.
5) Opportunity and diversity
We all want a sense of achievement and people with dementia are no different. They still want to have the chance to do the things that they love, or try new hobbies and activities, and they should be encouraged and facilitated to do this.
6) Belief and positivity
There is so much we can do to improve the lives of people with dementia so that this disease is no longer seen as a black hole of nothing, stigma is reduced, and people are less fearful about admitting that they have dementia symptoms and need some extra help.
7) Fairness and independence
Our modern world of self-service and technology can be baffling for people with dementia. The systems of daily living must be flexible to accommodate people with dementia so that they can remain as independent as possible.
Don’t ignore people with dementia, talk about them rather than with them or assume that they have nothing to contribute. Remember the saying ‘Nothing about us without us’.
9) Embracing experience
Society can be very dismissive of older people, especially those with dementia, and the contribution that they can make to their communities. As a result many older people are made to feel that they are an unwanted burden. Yet they are a great asset to their communities and can teach us so much – it is time to listen and learn.
10) Action, not just words
So much was said about dementia in 2012. Indeed the disease has never had such a high profile. This must not just be a short-lived ‘trendy’ topic to dip in and out of however. The problems people with dementia have within the health and social care systems and wider society are reflective of the issues troubling many others. Sustainable long-term solutions to issues ranging from social care funding to care in hospitals, standards in care homes to supporting people within their own homes, diagnosis to end-of-life care are all desperately needed and long overdue.
Until next time...
Until next time...
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