An Alzheimer’s Society survey1 of unpaid current and former carers of people with dementia in the East Midlands reveals that family and friends are the backbone of their support.
Four out of five (81%) carers in East Midlands classed themselves as primary carers, taking on the majority of caring responsibilities for their loved one.
Spending on average over three working days a week (24 hours) providing essential practical and emotional support, the impact of unpaid caring duties comes at a price, with almost a third going as far to say they feel they have lost their identity (30% across the East Midlands).
Alzheimer’s Society is encouraging people to sign up to a Memory Walk, which sees thousands of people walk for, or in memory of, a loved one with dementia. Funds raised will go towards vital campaigning efforts and support services desperately needed by people who have been devastated by dementia, including carers.
Iain Gilbert, 51, is doing Clumber Park Memory Walk for his dad Roger who has dementia. He has many fond childhood memories of Clumber Park.
“When I saw Clumber Park was one of the Memory Walk locations, I thought it was meant to be. It is one of the places my mum and dad took me all the time when I was a child. I’d play football with my dad and we’d walk around the lake.”
“It’s got some really good memories of us all. I remember when I was 4 or 5 dad would lift me up on his shoulders. Sometimes it was because I was tired, and sometimes because being up on my dad’s shoulders was fun. That is a special memory, and it will be significant and poignant when I do the walk.
I was really close to my dad (Roger) when I was growing up. I remember when he took me to my first football match at Doncaster Rover’s old Belle Vue ground, and then we had season tickets together when I was a child. I took my boys for the first time to the new Keepmoat ground three years ago and dad came with us.
Dad is my hero and a role model. You know that boys and dads are at loggerheads sometimes, but it would always pass. He was always the steady and patient one. We need to be patient with him now
I know a lot of people who are doing Memory Walk will be doing it in memory of someone. I wanted to do it while dad’s still here. He’s in twilight years with dementia, so I want to do it for him now. I feel like I’m losing him on a daily basis, and when he is gone it will be like losing him twice.
I’m bringing some friends who will be supporting me on the day. By raising money for Alzheimer’s Society, I can help those with dementia and their families, now and in the future. My advice to anyone on this journey is that eventually your loved one may not know who you are, but you can still remember them. You also have to pull together as a family and lean on each other. You only get one family.”
Alzheimer’s Society is also calling on the Government to take clear action to introduce a sustainable funding model, which pools the risk of care costs to provide people living with dementia with easy and timely access to personalised care. This should be supported by an adequately resourced and trained social care workforce.
Alzheimer’s Society is also campaigning for better recognition of unpaid carers, coupled with improved dementia-specific support and breaks.
The survey revealed the isolation felt by unpaid carers of people living with dementia. A quarter revealed they lost friends (30%) and lacked frequent social contact with others (32%), saying that just one regular phone call from family or friends would have helped them cope (30%). Almost a quarter also said they didn’t have anyone they felt they could go to for help (24%).
Almost a third (30%) surveyed have had to juggle caring duties with working full time, with over a quarter (27%) forced to reduce working hours.
Caring duties have also taken people away from their family and homes, with many spending less time with their partner or spouse (15%). Over two-fifths said their caring duties put a strain on their relationship (43%).
Alzheimer’s Society CEO, Kate Lee, said:
“There are so many family members and friends providing care around-the-clock to keep their loved ones tethered to the world. This vital care can be incredibly rewarding but comes at a cost – often coping with changes to behaviour and carrying out daily tasks many of us take for granted.
“By signing up to one of our Memory Walks, we can continue to provide help and hope to everyone who has been devastated by dementia. We see thousands of people, all connected by similar experiences, coming together, which is always incredible to witness. From the buzz of the crowd to the hug of a stranger who gets it – whatever you feel on the day, you won’t be alone.”
Supporting the findings, actor Anne-Marie Duff added:
“Alzheimer’s Society is a lifeline through some of the hardest and most frightening times and a voice to thousands of families who are living with dementia.
“I know first-hand the impact of caring for a loved one with dementia, after my brother Eddie was diagnosed with dementia in his early 40s. Unpaid carers exemplify what it means to be kind and compassionate – quite simply, unpaid carers are heroes.”
Currently, 1 in 10 of the population are providing unpaid care2. With one in three people born today going on to develop dementia in their lifetime, Alzheimer’s Society is concerned that the overwhelming impact of caring for someone with dementia will only be exacerbated without urgent action.
By taking part, Alzheimer’s Society can continue to provide help and hope to everyone living with dementia. Money raised will help the charity reach more people with its expert support services, fund crucial research to improve care and support carers, and continue campaigning for change to make sure dementia is a political priority.
The sponsored Memory Walks are free to sign up and taking place across 24 locations this September and October.
To sign up to an Alzheimer’s Society Memory Walk, visit memorywalk.org.uk
Posted on 21 August 2023
