Paul Edwards, Director of Clinical Services at Dementia UK, looks at what dementia means in the 21st Century.
Firstly, we need to understand what dementia is at its most literal level. As a neurodegenerative condition, it causes alterations to the brain which can lead to behavioural changes, memory loss and ultimately death. Some people are confused about the differences between dementia and Alzheimer’s. Dementia is an umbrella term encompassing over 200 different subtypes, of which Alzheimer’s is the most common. In addition to this, some people are unaware that there are subtypes which affect much younger people. It’s also not solely down to genetics and affects each family differently.
Families are in urgent need of clarity around dementia. They come across myriad emotional and practical challenges; from managing the unpredictable behaviour of a diagnosed relative, to asking questions on financing care or end of life needs. Social isolation affects them hugely as they avoid meeting friends and family through fear of how others may perceive a diagnosis of dementia, or simply because their demanding caring responsibilities give them no time. The impact of dementia on families means we should help them to not be too hard on themselves, and see that dementia is a growing problem which shouldn’t be ignored, or stigmatised. We should also make them aware that there is support out there from dementia specialists like Admiral Nurses, who can help them live confidently and with less fear in the face of the condition.
With society on the verge of a workforce crisis, employers need to be providing clarity around the condition as well. Recent statistics from Carers UK shows that over two million people have left work as a result of the emotional toll of caring. Whilst these figures do not exclusively relate to people with dementia, they show the scale of the problem. Many people within this bracket are sandwich carers, which means they have the dual responsibility of caring for an older relative as well as a child. ONS statistics have further highlighted the struggles faced by this silent generation of carers with over a quarter now facing depression and stress. The impact of dementia for employers means encouraging open door policies at work, where no one should have to put on the pretence that they’re getting by; it also means having flexible working hours in place and a carers policy which clearly enshrines the rights of our workforce carers.
And what about the Government’s clarity around dementia? In a clear lack of compassion and understanding of the true scale of dementia faced by society, the long-awaited social care Green Paper has been marred by yet more delays. It is hoped that this document will introduce ways to narrow the widening gap between the separate health and social care systems. Many people with dementia have their complex needs addressed by the healthcare system, when there is a growing body of evidence showing how early interventions through social care can lead to healthier, happier and longer lives. Dementia means that the Government should be investing in care and support so that people facing the condition no longer fall between the social and healthcare gap.
If we truly want to overcome one of the greatest health issues of our time then we need a concerted effort across society; families, friends, employers and the Government need to wake up to what dementia clearly means.
This article first appeared on the Open Access Government website