4 out of 5 unpaid carers are taking on the bulk of caring responsibilities for people with dementia

• Alzheimer’s Society puts spotlight on the price unpaid carers pay to provide vital care to loved ones 

An Alzheimer’s Society survey1 of over 1,000 unpaid current and former carers of people with dementia reveals that family and friends are the backbone of their support, with four out of five classed as primary carers taking on the majority of caring responsibilities (80%) for their loved one. 

Spending on average four working days a week (28.5 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 (26%). 

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. 

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 (27%), saying that just one regular phone call from family or friends would have helped them cope (24%). Three in 10 also said they didn’t have anyone they felt they could go to for help (29%). 

Around half (47%) surveyed have had to juggle caring duties with working full time, with one in six (17%) forced to reduce working hours. For unpaid carers aged 18-34, additional pressure led to absenteeism, with over a fifth feeling less productive at work (21%). 

Caring duties have also taken people away from their family and homes, with a fifth of respondents who have, or are currently, staying the night at least once a week (18%), spending less time with their partner or spouse (22%). Over two-fifths said their caring duties put a strain on their relationship (43%).  

For parents aged 25-34, around a third spent less precious time with their children (32%) and have had to increase childcare costs (33%), with two fifths relying on support from other family and friends to help with caring for their children (40%).

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. 

Helen Pike, 58, from North Northamptonshire, cares for her husband Geoff, 60, who is living with frontotemporal dementia and primary progressive aphasia.  

She said: “Geoff can no longer care for or protect me as he always wanted to, and he can't complete household chores, undertake personal hygiene needs, walk more than a few steps, or communicate. You shift from husband and wife to cared for and carer.  

“Geoff needs me more than ever now and I’ll be here for him, but this comes at a cost. I have given up my career in the NHS and a good salary, and we had to move house to be somewhere practical and close to family. We have no social life, no outings, no free time, no planning or chatting. It’s already having an impact on me – it’s no wonder that carers who have these responsibilities for months or years on end so desperately need support.” 

“Caring for Geoff doesn’t feel like a duty - to me it is part of being married or in a relationship. But that doesn't mean it isn't hard, patience testing, heart-breaking or future-stealing.”