Millions face hidden toll of dementia

The emotional toll of dementia

New research from Alzheimer’s Society, based on a UK wide survey of more than 2,000 people, reveals the emotional toll many are carrying behind closed doors. Those surveyed described years of exhaustion, anxiety and grief as the charity’s annual fundraiser to support people impacted by dementia – the Forget Me Not Appeal - launches this week.

Carers reaching breaking point

Nearly half (43%) of people caring for someone with dementia say they have reached breaking point and felt they were unable to cope, with one in ten (10%) experiencing this more than once.
More than half (56%) say caring has damaged their mental health, while seven in ten (70%) fear the stress is harming their own health and wellbeing. Many are also suffering in silence, with nearly two-thirds (64%) admitting they hide how they feel from friends and family to avoid being a burden.

The research also reveals widespread sleep deprivation and constant worry being a defining feature of life for many.  The emotional toll is profound, with seven in ten (71%) saying they feel they are already grieving the person they once knew - even as they continue to care for them.

Michelle Dyson, Chief Executive of Alzheimer’s Society, said:

'Dementia is one of the greatest challenges facing our society today, but the real tragedy is how many people face it alone. Behind every diagnosis are families facing emotional, financial and practical pressures that can feel overwhelming.

Many turn to Alzheimer’s Society as a vital lifeline of support. Last year alone, we supported tens of thousands of people through our support line, with over half of those calls coming from carers, friends and family.

We are proud to be there for people when they need us most, but families should not have to bear this overwhelming weight. With the right investment in diagnosis, care and support, alongside bold action from government, the weight can be lifted.'

Catherine Courtney-Diggins, age 38, is a parent of an 18-month-old. Her dad Tom is living with dementia and is now in a care home. She said: 

'Dementia has touched every part of our lives. We’re constantly juggling work, childcare and visiting Dad in his care home, while also supporting my mum, who carried so much of the caring on her own for so long.

'It’s heart-breaking to watch - especially for the children. The older ones remember the man he used to be, and the younger ones don’t understand why their grandad can’t talk to them or recognise them anymore. But even now, there are moments - a smile, holding his hand - that mean everything to us.

Alzheimer’s Society has been a lifeline for our family. Their support has helped us feel less alone and better equipped to cope with the emotional weight of what we’re going through. No family should have to face dementia without that kind of help.