Having spent 19-years graduating in dementia, I can honestly say that I think I know dementia pretty well. Its highs and lows, the surprises and quirks, the sadness and pain, and the endless battles you fight for the care your loved one needs and deserves whilst endeavouring to keep yourself from falling apart! You know how you would like the support systems to work, you know what you’d change if you could, and you would go above and beyond to make the lives of everyone going through that same journey as you a little bit more bearable.
The fact that I can say that there are highs at all may leave some people rather baffled, but dementia isn’t a black hole of nothing. We focus so much time on what is lost when someone develops dementia, but there are occasionally unexpected moments of tenderness and happiness too.
Take for example my dad; he was generally never a man to show huge emotion or emotional engagement. He was a loving and caring father, but not someone who showed their feelings very much. Yet one afternoon, as I sat with dad in his care home in a state of fairly obvious upset over a boyfriend (not for the first time where this particular boyfriend was concerned I might add!), dad’s kindly smile and request to know what was wrong was so very touching, and so very un-dad like. Equally his, “Thank you for everything,” said so clearly and with tears in his eyes as I kissed him goodbye one Christmas Day, totally crumbled my steely resolve to have a good, British, stiff upper lip. Put both these moments in the context of dad’s very limited communication skills, and you see why their impact was so keenly felt and so totally unforgettable.
Yet speak to most members of the public who have no experience of dementia and they will probably paint a picture of huge negativity, if indeed they have much concept of dementia at all. They may also have very little appreciation of how dementia impacts upon the life of both the person living with it and their nearest and dearest. Yet I would venture to suggest that most people have huge capacity for learning more about dementia, showing kindness and compassion to people living with it, supporting improvements in services and attitudes and, hopefully, have a demonstrable desire to avoid developing dementia so that we may have some hope of reversing the very alarming predictions for future cases.
So how do we change perceptions, educate, and encourage everyone to bring positivity to the lives of people living with dementia? My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically.
Without that personal touch, the policy you end up with may be scientifically perfect, clinically expert, and from the point of view of politicians, business leaders and the health and social care sectors achieving a level of awareness that reflects their own expectations, but it lacks human emotion, and without true appeal to the hearts and minds of society as a whole, it will only ever achieve limited success.
If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia. We are the people who are more than just the eyes and ears; we are the lifeblood of the campaign to raise awareness, challenge dementia, and make every community the best place it can be for someone throughout their journey with dementia.
The greatest educators are people who have learnt from their own experiences, and in the case of carers past and present, from experiences that they never anticipated or welcomed but that they embraced wholeheartedly. Policy makers are missing a fundamental chance to build on the current profile of dementia if they do not welcome, engage, and put at the forefront of policy and campaigning all the people who have truly graduated in dementia. We are the UK’s greatest asset as we give dementia the greatest challenge it has ever faced.
Until next time…