With over a MILLION people in the UK predicted to be living with dementia by 2025 we speak to three carers to find out how they cope
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It’s estimated that 850,000 people in the UK are currently living with dementia, and by 2025 this number is expected to surpass one million.
Although there is currently no cure, with the right treatment and support, it’s possible for people with dementia to lead active, fulfilled lives for many years after they are diagnosed.
But it’s not just the person with the diagnosis that can be affected by a long-term condition like this.
We now know that dementia is a degenerative brain disease that causes changes in a person’s ability to think, reason, communicate and remember, and can often also affect their personality, behaviour and mood.
Dementia is also known to impact the lives of loved ones, who report reduced social contact, a lack of support and neglect for their own wellbeing as a primary carer for a person with dementia.
One site recognising the significant secondary effects of living with dementia, is Live Better With, a revolutionary healthcare platform dedicated to improving the day-to-day lives of people with long-term conditions, such as cancer, menopause and dementia.
Proving to be an invaluable resource to thousands of people in the UK and US, Live Better With provides useful services, specialised products and community forums enlightened by experts and people living with – or affected by – the conditions to make each day a little easier.
Here, three carers share their experience of living with dementia and the ways they have found to live better with the condition.
‘A dementia diagnosis can typically affect a partner, children, grandchildren, siblings and beyond,’ says Barbara Stephens, dementia specialist and caregiver in chief at Live Better With, who has cared for three family members with dementia.
Dementia is also known to impact the lives of loved ones, who report reduced social contact, a lack of support and neglect for their own wellbeing
‘When my father-in-law had dementia in the late 1980s, the immediate family got drawn into a situation that felt like a crisis at the time, particularly for my mother-in-law, who cared for him until she couldn’t cope anymore.’
It’s estimated that the average informal carer spends around 44 hours per week providing care duties for a person with dementia, and these days 22 per cent of them have been caring for that person for over a decade.
In Barbara’s case, there was no formal diagnosis for her father-in-law’s dementia because it was very poorly understood at the time.
We now know that dementia is caused by degenerative brain diseases that bring about changes in a person’s ability to think, reason, communicate and remember, and can often also affect their personality, behaviour and mood
Though the condition is still commonly referred to by the umbrella term, the word dementia encompasses lots of different types of conditions, the most common of which is Alzheimer’s disease.
It was this lack of understanding that encouraged Barbara to study the condition professionally. Now her own father is living with dementia and she uses this knowledge base, both professional and personal, to support other people living with the condition at Live Better With.
Barbara Stephens, dementia specialist and caregiver in chief at Live Better With, who has cared for three family members with dementia
‘The aim is to help people live their lives as fully as they can, for as long as they can, so it’s about sharing the best ways to do that,’ Barbara explains. ‘With dementia, relationships, activity levels and capacities may change but the specialised products available on Live Better With, like easy-to-use radios and music players, help us to remember that the person, and their interests, are still the same.
‘Engaging with carers and people living with dementia via our forums, newsletters and articles also enables families to cope with the condition in an informed way, but also their own way.’
Cassandra Farren, 39, found the real stories and diaries written by the Live Better With community helpful
For author Cassandra Farren, 39, it was the real stories and diaries written by the Live Better With community that helped her make one of the hardest decisions of her life: to take her mother, 73, to live in permanent residential care, four years after the dementia diagnosis.
By the time single mum-of-two Cassandra was making a 60-mile round trip twice a week to care for her mum, and give her father some respite, she knew the family could no longer cope without professional help.
‘Who helps the person caring for the carer?’ asks Cassandra. ‘I was in a constant state of anxiety about providing enough support to both of my parents and ultimately reached my breaking point in 2018, when I didn’t feel strong enough anymore.’
Reading about how other users dealt with the condition is what reassured Cassandra that residential care was a decision made by many other family carers in the UK, every day.
‘Without the solidarity of other people going through it, I don’t know how I would have coped,’ Cassandra explains.
‘It was the small pieces of advice that people shared, like: Never say “goodbye” or mention “home,” and don’t wear a coat because it looks like you’re leaving, that made mum’s transition into care easier for both of us. Until that point, I didn’t feel like anyone understood what I was going through.’
Jacquie left behind a job she loved to take on primary care for her husband Tony, who has remained at home since his diagnosis nine years ago at the age of 58
Much like Cassandra, it was that feeling of social isolation that former teacher trainer Jacquie Nunn, 67, struggled with when her husband Tony was diagnosed with Alzheimer’s in 2010, at the age of 58.
There are an estimated 42,000 people under the age of 65 living with dementia in the UK, even though it is a condition more commonly associated with older generations.
Jacquie left behind a job she loved to take on primary care for Tony, who has remained at home since his diagnosis nine years ago.
She says: ‘At 67, it’s hard not to look around at what other people are doing with their retirements.
‘After the diagnosis, it felt like the rug had been pulled from under our feet and you have to adapt to a life where you’ve lost your work, your friends, your sense of self.
‘I can’t remember the last time I went to the cinema, or did anything alone, because I can’t leave Tony by himself. It can be very isolating.’
Jacquie says peer support has been invaluable
Part of what has made a difference has been practical advice articles, like the ones written by Barbara Stephens, and Live Better With community forums.
‘Peer support is invaluable, for all sorts of reasons,’ Jacquie says. ‘When you’re approaching 60 and you’re diagnosed with Alzheimer’s, you can feel like an outsider. As the person diagnosed, there’s this sense of being different from the rest of the world. So, having contact with other people in the same situation is immensely important at first.
‘It’s also practical from a carer’s perspective. There’s a whole raft of things that come at you with a diagnosis, like lasting power of attorney, wills, benefit entitlements and personal independence payments (PIP), so that shared information and advice is brilliant.’
Like Cassandra, Jacquie feels as if she has been left behind when it comes to professional help. The only breaks Jacquie gets are when Tony spends time at a day centre for 12 hours a week, and this is a service that Tony has to pay for.
She says: ‘A lot of service providers seem unaware of the number of people living with dementia outside of their ambit. We haven’t been contacted by some services for over a year, despite being on their books.
‘If Tony’s liver or heart had failed him, his needs would have been met by the NHS, but brain disease simply doesn’t receive the same support.’
It’s thanks to healthcare platforms like Live Better With that forgotten communities like informal carers have a place to seek practical support and guidance for living with dementia.
Barbara adds: ‘As a society, we have to accept that dementia is part of our lives. The products and services of Live Better With reflect what everyday life could become for many hundreds of thousands of people.
‘It’s so important that we understand the condition better and learn how to include people with dementia in our everyday activities, treating them with respect, dignity and compassion.’
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