The near-constant running of a washing machine, often with only a single item of clothing, was one of the first unusual signs that alerted Emily Harris that something was wrong with her mother, Andrea.
Andrea, then 56, had always been highly organized, but her daughter Emily noticed the washing machine running frequently, sometimes with just one garment. While initially dismissed as an "obsessive habit," Emily now believes it was an early indicator of frontotemporal dementia (FTD), a condition affecting an estimated 30,000 people in the UK.
FTD encompasses a group of progressive brain disorders that damage the frontal and temporal lobes, impacting personality, behavior, and language. It typically strikes individuals between the ages of 45 and 64, often presenting with subtle symptoms that differ from Alzheimer's disease, which primarily affects memory in its early stages. FTD patients may exhibit impulsivity or sudden changes in preferences, such as developing a sweet tooth.
Experts note that FTD is more likely to be overlooked or misdiagnosed because its early symptoms can be vague and attributed to common stressors like career pressures, aging parents, or hormonal changes. Highly organized individuals may also compensate for the condition, making it harder to detect.
In Andrea's case, other concerning behaviors included an online shopping addiction, nonsensical text messages, and frequent minor car accidents. These were initially attributed to stress, exhaustion, and later, menopause. The turning point came when Emily took Andrea for a memory assessment and brain MRI, which led to her FTD diagnosis.
"There were so many red flags looking back," Emily said, emphasizing that when a parent is younger and seemingly healthy, it's easy to dismiss concerning signs. She urges others to trust their instincts and not let potential symptoms be written off as stress or menopause.
Like Alzheimer's, FTD results from the buildup of abnormal protein clumps in brain cells. The exact triggers are unknown, and there is no cure, though an estimated one in three cases may have a genetic component. Symptoms vary depending on the affected brain region, ranging from personality changes and social disinhibition to physical symptoms similar to Parkinson's disease or difficulties with speech and language comprehension.
Actor Bruce Willis was diagnosed with FTD in 2023, a year after announcing his struggle with aphasia. His wife, Emma Heming Willis, initially attributed his speech changes to a childhood stutter.
Andrea's symptoms escalated over several years. She began mixing up names and forgetting words, though Emily initially attributed this to her mother's past struggles with remembering her children's names due to their close ages. Her text messages became increasingly jumbled, leading some family members to worry she might be intoxicated. The car incidents and frequent deliveries of ill-fitting or duplicate clothing for her grandchildren also raised concerns.
Andrea's memory began to decline, evidenced by numerous daily emails for password resets, signaling a change in her decision-making abilities. After a visit to a menopause clinic and a course of hormone replacement therapy proved ineffective, Emily pursued a formal memory assessment.
The subsequent brain scan revealed significant atrophy, leading to the FTD diagnosis. Emily described a sense of relief amidst the devastation, finally having an answer for the changes she had observed that could not be explained by everyday stressors.
FTD diagnoses can take longer on average than Alzheimer's disease, partly because early behavioral or language changes are often mistaken for psychiatric issues or normal stress. Midlife hormonal changes, particularly in women, can also mask symptoms. Experts note that individuals with FTD often do not recognize their own condition, a key differentiator from menopause-related symptoms, which are typically recognized by the individual experiencing them.
Dr. Claudia Cooper, a dementia specialist, stated that while there is no cure for FTD, knowing the diagnosis significantly helps families and caregivers in planning for the future, setting goals, and accessing support such as cognitive stimulation groups. The earlier a diagnosis is made, the more the patient can participate in future planning.
Charities highlight the need for improved dementia diagnosis in general. The Alzheimer's Society advises approaching loved ones about concerns by discussing observed difficulties in everyday life rather than directly mentioning dementia. Suggesting that GPs can treat memory and thinking issues caused by common health conditions may be a more effective initial approach.
Emily hopes that sharing her mother's experience will encourage others to seek answers if they suspect a loved one is experiencing FTD, emphasizing the importance of trusting one's instincts and persistently seeking clarification.