In my 40+ years of working with people with dementia, I am so frequently asked the most simple of questions: 'What is dementia?' The very fact that I am asked this question as frequently today as I was when I first began my career is startling to me. It tells me that dementia is still an enigma to a great deal of society, and this is something that has got to change. To scratch the surface of this question, dementia is an umbrella term that is used to describe a range of conditions that affect the brain and of these, Alzheimer's disease is the most common. Dementia affects more than 800,000 people in the UK and 36 million people worldwide. The symptoms that someone with dementia experiences will depend on what disease they have; what parts of the brain are damaged, the severity etc. As well as these clinical differences, dementia shows itself in different behaviours and emotions in different people, just like behaviour and emotion is different amongst people without dementia. It is this individualism that is too often overlooked, or disregarded altogether.
A report recently published by Red & Yellow Care in association with Alzheimer's Society found that a staggering 43% of UK adults don't think it is possible to live a good life with dementia. This must change fast. It is this belief that gets in the way of people seeking help, getting formally diagnosed, and ultimately receiving the care they need to live well. Too often I meet people who have been too afraid to seek medical advice because they fear the diagnosis of dementia. We must reinforce the reality that people can live a good life with dementia, so that people may receive a timely diagnosis without the fear of being stigmatised, which ultimately can lead to them getting the appropriate care and continuing to live a happy, fulfilled life.
I believe that it is the right of people with dementia to achieve the same kind of fulfilment as those without the condition. Fundamentally, whether one lives with dementia or not, one deserves to be treated and respected as unique and valuable and not be treated as a product of their disease; as a statistic.
If those with dementia are to achieve the same kind of life fulfilment as those without the disease, the following areas of life must be recognised and respected by the general public: living in the moment, sustaining relationships, valuing good and bad days and supporting spontaneity. These are all things which people without the condition will likely take for granted as integral aspects of their lives. This, sadly, is not always the case for those living with dementia. To put this into perspective, do we not all go through life having good days and bad days? Do we all not sometimes feel down, angry or stressed? Why, then, is it surprising when those living with dementia have these days too?
This is not to suggest, however, that those with dementia are in no way different from those living without it. Dementia is a serious condition which requires specialist treatment. Maintaining health is central to a good life with dementia. We need to treat both the dementia symptoms and the co-morbidities; offer care across physical, mental and social health. In other words, treat the whole person, not just the condition.
People living with dementia will encounter a number of different care professionals throughout their life: nurses, doctors, occupational therapists and dieticians etc. It is easy to see how the presence of so many professionals can begin to impact on that person's identity beyond their diagnosis. The future of dementia care, therefore, must overcome the current fragmentation of care and pioneer a clinical care service that revolves around the individual as well as provide support to their family. In other words, an integrated system which combines the services of the many necessary care professionals into a manageable and less-intrusive package. There are services which are already leading the way in integrated dementia care, such as Red & Yellow care, and this is certainly encouraging.
Over the past 40 years I have met and worked with many people with dementia who, with the right care and support, enjoyed their lives, and I hope to see many more with the help of such integrated care services.