Living with dementia – Families and friends speak of ‘feeling helpless’ as diagnosis rates rise
PUBLISHED: 12:12 26 December 2019 | UPDATED: 15:05 30 December 2019
A close friend of a once “fun-loving” ski instructor struck down by dementia at 31 has spoken of how “helpless” she feels watching her decline – while a former Suffolk mayor has revealed how his wife became confused by the Christmas period.
As diagnosis rates continue to soar in Suffolk and Essex, Kirsty Minton, a friend of Becky Barletta, and Roger Fern, former Ipswich mayor, have shared their experiences of the "cruel and unrelenting" illness.
Becky, from Hundon near Sudbury, was given the crushing news she had a hereditary and rare form of dementia at just 31. She is now barely able to speak or feed herself.
Now her friend Kirsty Minton, who lived with Becky in London while she studied photography, is dedicating the 12 months of 2020 to showcasing precious travel photos she took before her diagnosis.
"She just enjoyed life which is why it is cruel that dementia has taken it all away from her so quickly," the 33-year-old said.
"The worst part is you are helpless to do anything for her but watch. I don't want people to remember her for this, I want to help create a legacy for Becky and show the creative, talented and full life she led."
Becky's photos will be featured in a 'Through Her Eyes' charity calendar, which is on sale now at The King's Head in Dullingham, Newmarket.
'Pat really didn't understand what Christmas was'
Former Ipswich mayor Roger Fern spent his first Christmas apart from wife Pat this year.
Diagnosed nine years ago, Pat was told she had Alzheimer's with vascular dementia, after forgetting unusual things - such as why she went upstairs.
"In April, after eight years of looking after her we took the incredibly difficult decision to move her into a home," he said.
"I still feel quite emotional about it. It's particularly poignant at this time of year.
"Over the last couple of years Pat really didn't understand what Christmas was about. She didn't understand what the tree was for, or cards, or presents. You do feel a bit helpless as they are so lost.
"This is the first Christmas without Pat, I'm cooking the dinner, so it will be really strange.
"It will be interesting to hear from the home how Pat feels on her first Christmas not being here."
Ms Minton and Mr Fern have shared their experiences as dementia diagnosis rates in our area were revealed to have leapt up in the last five years.
So what's the current situation?
The total amount of people on the dementia register in the UK has risen from 37,000 to 56,500 - an increase of 53%.
Places with the biggest percentage increases include:
- West Essex (101%)
- North East Essex (81%)
- Norwich (73%)
According to research by Alzheimer's Society and the London School of Economics, the projected number of over 65s with dementia in Suffolk is due to reach 18,770 in 2030.
Meanwhile, in Essex, the number is predicted to rise to 32,350 over the next decade.
How much is this expected to cost?
Caring for people with dementia can be expensive - with money spent on both public and private healthcare.
In Suffolk, the overall cost of dementia is expected to rise from £505million in 2019 to £880million in 2030 - up 74.1%.
And in Essex, the total bill is expected to go through the £1bn barrier - from £880m currently to £1.59bn in 2030.
How can families get help in Suffolk?
Andy Yacoub, chief executive of Healthwatch Suffolk, said: "The prevalence of dementia is increasing and will continue to do so. While statutory services are an important source of support and care, we face a reality in which we cannot rely on them alone to cope with the growing demand concerning this cruel and unrelenting condition.
"A particular challenge for Suffolk is the rural nature of our county because we know that loneliness and social isolation can make life much harder for people with dementia, and their carers.
He added: "Health and care agencies must therefore look for solutions together with local families, carers and third sector organisations. "Good work is already taking place and this includes the work of the Suffolk Dementia Forum."
A similar service is available in Essex, where similar challenges - including an ageing population - exist. Living Well Essex provides emotional, clinical and practical support.
Go to livingwellessex.org for more details.
What is the Suffolk Dementia Forum and what is it doing to help families?
"Current support across the county is impressive. The Dementia Together service (run by Sue Ryder) is a wonderful seven day a week facility for personal assistance and signposting," said Sue Hughes, independent chairwoman of the forum.
"Additionally, Suffolk charities such as the Rural Coffee Caravan and Meet Up Mondays can play a very important part in helping to address issues such as loneliness, isolation and ensuring that people have the information they need to obtain help and support.
"The Suffolk Dementia Forum meets regularly, focussing on a range of important subjects.
She added: "We have already managed to encourage greater support and understanding from public transport, church and retail groups amongst others. Ultimately, we want Suffolk to become a dementia friendly place to live. It is therefore encouraging to learn about the efforts of local people and organisations to help achieve that aim."
Where does Suffolk County Council come in?
Becky Hopfensperger, the cabinet member responsible for adult social care, said demand for service is expected to increase - especially with Suffolk's ageing population.
"Responding to this requires a joined up approach between all partners, including the county council, clinical commissioning groups, the Health and Wellbeing Board, public health and others such as Healthwatch Suffolk, charities and of course our care providers.
"We recently met with the Alzheimer's Society to discuss their Suffolk Dementia Profile report and further discussions are due to take place between the Alzheimer's Society and the Health and Wellbeing Board through the dedicated Suffolk Dementia Forum.
She added: "The council's adult social care team recently changed the way it works in order to provide more far reaching support across the county. All our operational practitioners are able to respond to the support needs of those living with dementia, as opposed to having a smaller team to cover the entire county."
What did NHS England have to say?
"Spotting dementia in a timely way means people get the care they need, when they need it, so it's good news that thanks to concerted efforts nationally and locally the NHS is now diagnosing more people than ever before, beating the target we set ourselves," a spokesman said.
"As the population ages, dementia is becoming a challenge for more families, which is why the NHS Long Term Plan sets out a blueprint for older people's care and makes early diagnosis and treatment for major health problems a top priority."
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