Raising Awareness of Young-Onset Dementia
A woman from Bristol is sharing her personal journey to highlight the realities of young-onset dementia after her mother received the diagnosis at just 58 years old.
Emily Britton, 29, noticed concerning symptoms in her mother, Maria, in 2023. Initially, these were attributed to menopause, but it took several months of persistence on Emily’s part before the actual cause was uncovered.
Having transitioned from being her mother’s daughter to her primary caregiver in under two years has been profoundly “heartbreaking,” Emily noted. “A spokesperson for the Alzheimer’s Society mentioned that dementia is the leading cause of death in the UK, with one in three people likely to face it in their lifetime.”
While dementia typically affects those over 65, there are around 70,800 people in the UK diagnosed with young-onset dementia, often recognized before age 65, as the Alzheimer’s Society reports. Emily pointed out that while many people are well-versed in cancer discussions, there’s significantly less awareness about dementia’s prevalence.
Signs of Change
Not long ago, Emily, her mother, and her brother Harry were anticipating a dream trip to Disneyland in Florida. “My brother generously covered the costs for my mum, who had longed to visit, but right before we left, her behavior changed,” Emily recalled.
Maria seemed withdrawn right before the vacation, losing her excitement and not engaging in her usual mannerisms. “I kept asking her, ‘Are you okay?’ but couldn’t pinpoint what was wrong.”
After their return, Maria acknowledged errors at work but couldn’t explain them. She was advised to see a doctor and was prescribed HRT, leading her further down the road of misdiagnosis. By January of the following year, Maria had become increasingly distant and silent.
“This wasn’t like her at all; she used to be so chatty!” Emily recounted. Her mother was subsequently pushed to see another doctor, where she underwent a CT scan that appeared normal but led to further referrals.
A Struggle to Communicate
After resigning from her job, Maria’s condition worsened. Emily observed how her mother’s speech and cognitive abilities deteriorated drastically. “At one point, she could hardly string sentences together,” she said. A visit from the Dementia Wellbeing Service confirmed suspicions: Maria had frontotemporal dementia.
This type of dementia still leaves her mother aware of her loved ones but has drastically altered her personality and speech capabilities. “She can only express yes or no now and needs assistance with everything,” Emily explained. She plays an active role in her mother’s care, handling daily tasks like cooking, cleaning, and shopping.
Shifting Roles
Emily expressed how overwhelming it has been, reflecting on how, just 20 months ago, her mother was a vibrant person. “Now the roles are reversed, and I find myself as her caretaker. It’s a lot to bear,” she admitted.
There are moments, she confessed, where she wishes she didn’t have to shoulder this responsibility, though the essence of care remains strong. “I want to see her happy, and so I do everything for her.” After learning that their mother’s condition is hereditary, Emily and her brother are considering genetic testing.
“Facing this reality is frightening, but we’re just trying to keep moving forward, managing our lives while seeking happiness,” she concluded.
Fundraising for Awareness
Emily is committed to increasing awareness about young-onset dementia and recently participated in a 26-mile fundraising walk in the Lake District alongside her brother and partner. They raised over £600,000 for the Alzheimer’s Society, which has been pivotal in supporting her family through this challenging journey.
She emphasized how crucial it is for people to recognize the rapid progression of dementia. “Trust your instincts,” she advised. “I sensed something was off during our trip. It’s essential to acknowledge signs early, as they can lead to quicker assistance, even if the condition itself isn’t curable.”
