Anne-Marie Duff brands care system ‘a mess’ for brother with young onset Alzheimer’s

Anne-Marie Duff has spoken candidly about the difficulties she and her family have faced in trying to navigate the care system to get her brother, who has early onset Alzheimer’s, the help he needs.

The Bad Sisters star, 54, described the care system as "a mess" adding that it has been a "nightmare" trying to find specialist accommodation for her 56-year-old brother, Eddie.

Eddie was diagnosed with young-onset dementia nine years ago, in his 40s. Duff told The Times that getting the diagnosis was "very sad".

"It was sad, because he couldn’t accept it and he couldn’t fully comprehend it," she said. "It’s quite aggressive when it’s very early onset."

According to Alzheimer’s Society, young-onset dementia is when a person develops dementia before the age of 65. More than 70,800 people in the UK are living with young-onset dementia.

Duff, who was previously married to James McAvoy, said she and her family have been trying to find a place that is staffed by carers who are trained to look after dementia patients for Eddie to live full-time.

She added that Eddie "needs to be in secure care because he does wander off and it’s very dangerous". However, the care system is proving extremely difficult to navigate.

"The care system is a mess," Duff said. "He did have a social worker, who was working with him right up until Christmas, and then she was taken off his case and nobody has replaced her. The manager where he’s staying now has contacted the social services several times to no avail."

According to Dementia UK, many care homes do not accept people under the age of 65, as their facilities are mostly geared towards elderly patients.

A representative for the charity told the publication: "People with young-onset dementia may have unique and complex care needs, and finding a home that is suitable for them can be challenging."

Eddie currently lives in his own flat with a shared kitchen, with visits from care staff throughout the week and from his and Duff’s elderly parents, who live nearby.

Duff said: "It’s been so hard on them. Just watching them still parent and shaving him. Things like that are so beautiful."

But the challenge in finding a suitable care home that will take Eddie has made Duff worry for full-time carers, who may be under intense pressure.

"All the love in the world is not going to make you able to care for somebody with dementia. People feel they ought to be able to be a caregiver and that somehow, all of that will transcend reality," she said.

Duff has previously spoken about Eddie’s Alzheimer’s diagnosis and said she believes he started exhibiting symptoms of dementia when he was just 40.

In an appearance on This Morning, the History of Mr Polly star said she noticed "small things", like her brother would struggle to make a cup of tea or completing other everyday tasks.

She added that these changes were "quite common with any age of dementia".

Cases of young onset dementia have risen in recent years. Analysis by researchers from the Neurology and Dementia Intelligence Team, Office for Health Improvement and Disparities, showed that the number of people in the UK living with young onset dementia rose by 69% from 28,800 in 2014 to 70,800 in 2022.

Dr Hilda Hayo, chief executive of Dementia UK, said at the time: "We know that young onset dementia is poorly recognised and misdiagnosed which leads to delays in accessing crucial support. Worryingly, the figure of 70,800 adults who are estimated to be living with the condition in the UK, may just be the tip of the iceberg.

"Dementia is a huge and growing health crisis and with rising numbers, it is now more urgent than ever that families receive the specialist support they need.

"Right now, our specialist dementia nurses, known as Admiral Nurses, are providing life-changing support for families affected by all forms of dementia. I want to encourage all families affected by young onset dementia who are seeking support to visit our website for information and resources and to access our national Admiral Nurse Dementia Helpline and Clinics services."

Read more about dementia:

• Early dementia signs explained as most adults blame symptoms on old age (Yahoo Life UK, 4-min read)

• Dementia remains UK’s leading cause of death, analysis finds (PA Media, 3-min read)

• The love of my life was diagnosed with dementia at 48 (Yahoo Life UK, 9-min read)