‘The devastating reality of dementia is hidden behind closed doors’
If you asked anyone what the biggest killer was in the UK, what do you think they’d say? Cancer, maybe? Heart disease, possibly? Would you be surprised to know it’s actually dementia? Yes, the disease that many think is just part of getting old, is the biggest killer in the UK and a daily struggle for millions of Britons.
It’s a devastating diagnosis that has crept its way into homes across the UK, has been delivered to countless patients in the doctor’s office, and has ultimately impacted not only the lives of those who have been diagnosed but the lives of the people they love. And yet, it’s not being taken seriously by the powers that be.
Why?
Dementia affects around one million people in the UK. My dad, Jim (83), is one of them.
My dad has vascular dementia, the second most common type of dementia after Alzheimer’s disease, caused by reduced blood flow to the brain. Following his diagnosis in 2018, he has suffered a series of transient ischemic attacks, or mini-strokes, which have accelerated his cognitive and physical decline.
Dad, a former Vicar, devoted his life to the church. He was always at the centre of the community in the various parishes we lived in, always busying himself with helping others. He was a total workaholic.
Now, Dad’s life looks a lot different. He lives alone in assisted housing and has carers three times a day to help him with his medication and his meals. His mini-strokes, where he becomes spaced-out and starts slurring his words, are becoming much more frequent and he has been rushed to hospital on several occasions to minimise the damage they do. Each time, his cognitive abilities decline.
Although separated four decades ago, my mum, who is 81 herself, does what she can to care for Dad and tries to keep on top of his cleaning and shopping, but she isn’t able to help him physically.
My brothers and I also do our best to support both Mum and Dad but, as we all work full-time and I live a few hours away in London, it’s difficult for us to be around all the time. That’s where the guilt and frustration comes in. Families are left to bridge the gap left by a flawed social care system but there’s only so much they can do. Our experience, so similar to many, is having a terrible effect on the whole family.
This is the reality of dementia for many families across the UK, not just ours, yet it remains largely hidden behind closed doors. For far too long, dementia has been swept under the carpet and has not been treated as the priority it needs to be. I’m making it my own priority to keep sharing my story and my family’s experience, in the hope others will do the same.
As I said before, dementia is the UK’s biggest killer. Not cancer, not heart disease. Dementia. So, why isn’t it being prioritised as a health emergency like others?
It affects 1 in 3 people in the UK. Alzheimer’s Society, the UK’s leading dementia charity, estimates that the number of people living with the condition will rise to 1.4m by 2040. And it is estimated that two thirds of people living with dementia are women.
It is the greatest health and social care issue of our time. As anyone affected by dementia will tell you, the burden of support lands on the family and it is having a catastrophic impact on people’s professional lives, relationships and mental health. It affects all of us.
Research commissioned by Alzheimer’s Society recently revealed that over half (51%) of family carers have had their own mental or physical health impacted by caring for someone with dementia and over a quarter say they feel isolated.
These statistics paint a very bleak, but scarily accurate, picture of dementia.
Let’s take Mary, who I was privileged to meet during the filming of my documentary. Mary has had to sell her home and empty her life savings to afford care for her husband Richard who was diagnosed with early onset Alzheimer’s at the age of 55. Mary pays out a staggering £1,900 a week to afford his care.
This is just one of the heart-breaking stories I’ve heard in the past year. Families are desperate and are simultaneously battling dementia and a broken social care system.
Of course, I know this from my own experience too.
I mentioned the feelings of guilt and frustration. I live a few hours away from Dad so I’m not there as much as I like. This leaves me feeling anxious about his health, guilty that I’m not there as often as he might need and frustrated that the care system is not up to scratch. I’m angry that we’re not talking about this. The government rightly prioritises other health conditions like cancer and obesity, but not dementia. It’s not good enough.
Looking at this evidence, it’s glaringly obvious that dementia is not something we can shrug off. It’s not the old people’s disease people think it is. It’s going to affect all of us.
We should all be talking about this. I admit that it’s not easy, my family and I were never particularly open with one another, but it’s so crucial to ensure everyone gets the support they both need and deserve. If we talk about our experiences and share our stories, we can present an undeniable case to the government to make dementia a priority and make a crucial difference to the millions of families affected by the condition.
We also need the government to improve the social care system. Specialist dementia training is key to ensure those living with dementia get the care they need, and we must address workforce challenges, such as growing vacancy rates and low pay.
The system as it stands is not good enough. Families are struggling and people living with dementia are being left without the care they desperately need.
I don’t know what the future holds for my family and for my dad’s care, but we’d like to keep him as independent as possible for as long as possible. Keeping him connected to the community is key for him and I will fight tooth and nail for him not to go into a home.
Dementia is a crisis, a forgotten crisis. It affects all of us, not just older people, and it is high time that we treat it as the priority it needs to be.
More from Well Opinionated...
‘In Australia, wellness is a way of life. But are there lessons to learn from the UK's approach?’
'More dating shows need to platform what it's like to date as a Muslim woman'
Cut through the noise and get practical, expert advice, home workouts, easy nutrition and more direct to your inbox. Sign up to the WOMEN'S HEALTH NEWSLETTER
You Might Also Like
