An Alzheimer’s Society survey1 of unpaid current and former carers of people with dementia in reveals that family and friends are the backbone of their support.
Four out of five (85%) carers in the North West classed themselves as primary carers, taking on the majority of caring responsibilities for their loved one.
Spending on average four working days a week (30.5 hours) providing essential practical and emotional support, the impact of unpaid caring duties comes at a price, with a quarter going as far to say they feel they have lost their identity (35%).
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.
Manchester Memory Walk
Dawn Hodkinson and John Kitson from Preston alongside other family members are doing the Alzheimer’s Society Manchester Memory Walk on Sunday 8 October. It took two years and a lot of persistence from her husband John before his father Geoff Kitson finally obtained his dementia diagnosis.
Dawn explains: “John pushed the doctor to organise tests, which came back clear. However, as time passed, Geoff began to forget simple things like people’s names or where he was. We knew we had to fight harder. Eventually he received a diagnosis of advanced Lewy Body Dementia. The most heartbreaking thing for us as a family was that we thought he was imagining things. He had already fought Leukemia and won, but we knew he wasn’t going to win this new fight.
“We watched the laughing dad, husband and grandpa disappear before our eyes. Geoff loved his allotment but within a month he couldn’t remember how to find his way there. He adored his wife of 61 years but became so aggressive towards her she would lock herself in the bathroom. She still kept him at home and looked after him until the very end.
“The strain on her was horrendous, she was constantly on high alert never knowing what would come next with Geoff and his mood changes. She paid for alterations to their home, like a walk-in shower for Geoff, out of her own savings because all she was offered a step, seat and some hand rails for the bath. Geoff was 6 foot tall and was heavily set in the beginning while Jackie, his wife, is 5 ft 4 and very slightly built. There were no carers coming in and she spent sleepless nights listening for him moving around the house. They had the police come round after he would bang on the windows saying he was being attacked. Jackie’s mental health was at an all-time low; we would ask if she was ok and she cried because she felt she had no right to feel tired, to feel like things were too hard for her. Most of all, she always felt like she was letting Geoff down and was not doing enough.”
“We are doing the Manchester Memory Walk as we want to help find a way of researching this horrible disease and find ways of stopping loved ones having to fight alone with little or no help. Grieving once is hard, but grieving twice is even harder.”
Unpaid carers in the North West
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 (24%) and lacked frequent social contact with others (35%), saying that just one regular phone call from family or friends would have helped them cope (25%). Three in ten also said they didn’t have anyone they felt they could go to for help (28%).
Over half (51%) surveyed have had to juggle caring duties with working full time, with one in six (16%) forced to reduce working hours.
Caring duties have also taken people away from their family and homes and spending less time with their partner or spouse (20%). Over two-fifths said their caring duties put a strain on their relationship (51%).
“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.”
Emma Spragg (Alzheimer’s Society Head of Local Services in the North West)
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.”
Moving forward
Currently, one in ten 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 taking place across 24 locations this September and October.
Upcoming Memory Walks in the North West:
- Ainstree Racecourse, Liverpool on 3 September
- Tatton Park, Cheshire on 16 September
- Heaton Park, Manchester on 8 October
1Survey of 437 current carers and 566 former carers of people with dementia, put out to field between 27-30 July 2023.
