MP reveals her father was misdiagnosed with Alzheimer’s for years as she demands urgent overhaul of dementia care
Linsey Farnsworth says families are being “left alone” to navigate dementia care, after her father was incorrectly diagnosed with Alzheimer’s and treated for years.
Linsey Farnsworth, the Labour MP for Amber Valley in Derbyshire, has called for faster and more accurate dementia diagnoses, better-trained carers and a more joined-up approach to care.
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Speaking exclusively to LBC, Ms Farnsworth said her father had initially been diagnosed with Alzheimer’s disease and prescribed medication. A later brain scan found that he did not have Alzheimer’s, and doctors believe he has frontotemporal dementia.
She said the family had been supporting him for almost 10 years and described the diagnosis as the beginning of a “very difficult time”.
“You’re given the diagnosis and then not really given much support in the early days,” she said.
“I think it’s a battle really to get support and to get information about what this might mean for Dad and what this might mean for us as a family.”
The politician said her father had taken medication for years before the diagnosis was revised. She added the experience highlighted the need for accurate diagnostics, adding that patients should not have to wait “two years or more” for a diagnosis.
‘Losing your loved one over and over again’
The MP described how dementia had affected her family in ways they had not anticipated, especially as the disease progressed for her father.
“Later on, at the later stages, it’s really arduous on the family members who are feeling essentially like they’re losing their loved one over and over again,” she said.
She recalled the moment she realised the illness had progressed, when her father, a retired bricklayer, could no longer remember how to build a brick wall in his garden.
“That moment for me was really telling that the illness had progressed, and we’d sort of lost a little bit of him again at that point,” she said.
Ms Farnsworth said her father had not followed the pattern her family had expected from dementia. Rather than wandering or forgetting who his relatives were, he had lost much of his ability to speak.
“Every patient’s experience and journey will be different,” she said.
The MP also criticised gaps in dementia training among care workers and hospital staff, adding that her father had spent five weeks in hospital with an unrelated medical issue, despite there being no medical reason for him to remain in hospital.
She added that a delay in arranging a care package was the primary cause of the holdup.
Ms Farnsworth described how one nurse, who normally worked on a dementia ward, had managed to get her father out of bed and engaging with staff after he had stopped eating and had barely moved for weeks.
“The difference that that made was huge,” Ms Farnsworth said.
“Having that experience and those skills to support dementia patients is incredibly important and can make a big difference to how that person reacts and how that person engages.”
She said her father currently received care four times a day and praised the carers supporting him, but added that not all had received specialist dementia training.
‘Dementia care has to be a significant part’ of social care reform
Ms Farnsworth said the Government should work to provide greater support for dementia research and the development of treatments to help slow the progression of the condition.
She also called for an earlier diagnosis and a more coordinated care system, arguing that families were often left to find information and services themselves.
She described how her father’s condition had worsened after he developed an infection - something the family had not understood when he was first diagnosed.
“There’s all of these things that you don’t know when you first get the diagnosis,” she said.
“I feel that more can be done to make sure that that journey isn’t a solitary journey.”
Ms Farnsworth has been hosting and attending events in her Amber Valley constituency, where residents will be able to meet local services and hear from dementia organisations and experts.
She said her own family was fortunate to have relatives able to provide support, including her mother, who is a nurse, and her brother.
“It really makes me feel for other people that don’t have that support system in place,” she said.
“Every day that goes by is another day where families are struggling, where dementia patients are struggling, where people are frightened.”
A Department of Health and Social Care spokesperson told LBC: “This government is determined to improve outcomes for those living with dementia.
"We are appointing a new dementia tsar to provide dedicated expertise and drive forward innovation and improvements in care. And we are bringing forward the timetable for Baroness Casey's commission on social care reform to ensure the system gives people dignity, security and support when they need it most."