An Alzheimer’s Society survey1 of unpaid current and former carers of people with dementia 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.
“Mum was very independent and lived with Dad (who we lost to bowel cancer in 2021). It was obvious to all that knew her that she ruled the roost. In April 2016, Mum was admitted to hospital to have a hernia operation and the staff said we should have her assessed for dementia.
In June we went for an assessment and the nurse said straight away that she had dementia and that she’d discuss medication with Mum’s GP. With that we went home waiting for someone to give us advice. Apart from the GP saying there was a new tablet Mum had to start taking, we heard nothing.
If I could change one thing, it would be to be able to give all those affected by this terrible disease a list of people to contact to get the help required, rather than being told to go home and take more tablets. As new people join the activity sessions we attend locally, it is obvious that they are in the same position that we were seven years ago. I gladly give them a list of people to talk to and Alzheimer’s Society is at the top of the list.
I can honestly say that if it wasn’t for the help from Alzheimer’s Society, we would probably be sitting at home every day thinking there was no help and that we had nowhere to turn.”
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.
Unpaid carers need government support
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%).
“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.” – Kate Lee (Alzheimer’s Society CEO)
She added: “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 care. 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 are taking place across 24 locations this September and October. Leicester Memory Walk takes place at Abbey Park (Leicester) on Sunday 24 September, 2023. Other walks in the region take place in Birmingham, Coventry, Worksop and Nottingham.
1 Yonder survey of 437 current carers and 566 former carers of people with dementia, put out to field between 27-30 July 2023
This article is a press release from the Alzheimer’s Society.