As the medals have accumulated for Team GB at this year’s Olympic games, I have often caught myself wondering how amazing it would be if we could translate the dedication, talent, will-to-win, perseverance, commitment and self-belief that our sports men and women have shown at London 2012 into the people whose decisions, policies, beliefs and understanding (or lack of it) affect the lives of the most vulnerable in society.
You cannot work in dementia care, be a policy maker or decision taker and consider it to be just be a job, something that you do to earn your living and then walk away from. If you do, then you are in the wrong profession. If our sports people did not go the extra mile, care that little bit more, put in the hours and believe in better then they would not be where they are in the medal table.
One of my greatest frustrations is that while many talented people work in jobs that shape the current state of dementia care and influence the future of it, too many do not feel the passion for the subject that people like myself, and the many #dementiachallengers out there do. Conversely, at the grassroots, many people who work in dementia care feel a huge sense of pride in what they do, but are often restricted by protocols, policies and procedures that dilute their passion and knowledge so much that they are prevented from bringing their true care and compassion into the things that they do.
Passion is often mistakenly identified as being uncontrollable, unquantifiable and therefore a risk to stability, but it is needed more than any other quality when you are looking to transform the lives of those living with dementia. As people struggle on at home without the help, support and advice that they need, as they languish in acute hospital beds while bureaucrats argue over the care package that they should receive and how it will be funded, as they die needlessly because they are not properly cared for in a residential setting that does not meet the standards it should, is not staffed correctly or lacks the most basic understanding of dementia, passion is what is needed to drive up standards, change systems, improve the rates of diagnosis and the outcomes for people afterwards, make therapeutic care choices fundamental to everyone’s journey with dementia, support families and friends, educate the wider community, engender respect for the person, and provide dignity, compassion and personalisation in every aspect of dementia care.
Passion is about caring so much that you would go to extraordinary lengths to nurture and protect; qualities that are essential when you think about caring for people with dementia. Passion is also about understanding – having a real, intrinsic feeling for what life is like for someone with dementia and their loved ones, sharing their pain and their joy, striving to help them have the best life possible, and most importantly of all, seeing the person, not the disease.
For many people with personal, hard, honest and painful experience of dementia, their passion also has to translate into fighting for what their loved ones need. Often in the most difficult circumstances, where their relative’s future, even their life, hangs on the decisions of others, there is nothing more frustrating than knowing that you must convince people with no real passion for dementia, who work within frameworks devised without passion for dementia, to understand why you care so very very much.
Numerous people in authority talk about dementia having never personally experienced it. Many professionals work in influential positions for health and social care organisations, charities, government and the like who could walk into any job in their chosen sector; the fact that they work influencing the lives of people with dementia is more by accident than design. Changing this culture, and getting the voices of people with true passion into places of most influence, will transform how dementia is viewed, treated and understood.
Too many people still see dementia as a lost cause. It is true that changing perceptions takes time and patience, but it must also be borne in mind that for the people living with dementia right now and their families, they are left to struggle on, often in the dark about the journey they are on, feeling lonely and isolated, even ostracised from society. Dementia, because of its complexities and the individual nature of everyone’s journey with it, will never be able to have a one-size-fits-all model of care; something that everyone with a true passion for dementia recognises instantly. Just like our sportsmen and women with their Olympic triumphs that have given the whole country such a huge sense of pride and achievement, their journeys to gold have been individual to them, born from the passion that they have for their sport. The journey to gold-standard dementia care in the UK is still some way off a podium finish, but would be an even greater achievement for our country.
Until next time…