New research finds people from Wales feel dementia is underfunded

Nation.Cymru staff

Nearly 50,000 people in Wales are living with dementia, but new research suggests the condition’s impact reaches far beyond those diagnosed.

The 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 June fundraiser to support people impacted by dementia – the Forget Me Not Appeal – launches this week.

According to the survey 61% of people in Wales say dementia impacts their day-to-day life, while 48% of carers say supporting someone has negatively affected their mental health.

People in Wales are also significantly more likely than the UK average to feel dementia is underfunded.

Across the UK, seven in ten (70%) carers fear the stress is harming their own health and wellbeing, 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, 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.

Constant worry

Stephanie Marks lives in Llanelli and carers for her brother, Gareth, who has dementia and is now in a care home in Swansea.

Stephanie said: “The impacts on us were constant worry, tiredness, financial cost and restriction of our own lives. But we cared for Gareth willingly and gladly. We love him and it was painful to see him slipping away while the system took its time. Like grieving.

“One of the hardest things was clearing his home once he was in care. It was a dismantling of our shared lives. I felt guilty that I couldn’t put it all right.

“I love visiting my brother but I worry constantly about his declining physical and mental health. I feel a huge weight of responsibility for ensuring his care needs are met. He can’t fight for himself so I have to do it for him.

“I wish I’d been more assertive in the very early stages and insisted on better attention when the system failed him. Carers shouldn’t have to struggle for attention and action. Vulnerable people like Gareth deserve far better”.

Meanwhile Stephanie and Gareth’s 100-year-old mother, Peggy Hoare-Davies who lives in Port Talbot, has been raising money for Alzheimer’s Society to support her son and others affected by dementia.

Stephanie said: “Mum visits him in the care home. They have activities like Halloween and Christmas parties.

“When mum was approaching her 100th birthday people asked what she wanted and she wanted to raise money for Alzheimer’s Society. Her church put on a party for her and people donated. She ended up raising £1,000.”

Reality of dementia 

Rachel Nelson, Alzheimer’s Society Country Manager for Wales, said: “Every day, we see the reality of dementia across Wales. Behind every diagnosis are families navigating emotional, financial and practical pressures that can quickly become overwhelming.

“Too often people feel they’re facing this alone, which is why local support is so vital. At Alzheimer’s Society, we’re here to make sure no one has to go through dementia without help, guidance and someone to turn to.

“Through local services like Singing for the Brain groups, Alzheimer’s Society helps people affected by dementia feel supported, connected and understood.”

During the Forget Me Not Appeal in June, Alzheimer’s Society is encouraging people in Wales to wear a Forget Me Not badge – a symbol of the weight carried by families affected by dementia.

By donating and wearing a badge supporters will help to fund life-changing support for those suffering, as well as dementia research.

Visit the Alzheimer’s Society site to find out more.