Woman dies from rare dementia at 31

A 31-year-old woman from Manchester has died from posterior cortical atrophy, a rare, progressive neurodegenerative disorder that causes parts of the brain responsible for visual and spatial information processing to degenerate.

Local reports indicate that Gemma Illingworth was diagnosed with PCA in 2021 at the age of 28. After her diagnosis, her condition progressively worsened, severely affecting her ability to eat, swallow, speak, and walk. 

She passed away on November 27 of last year at 31.

According to the Independent, Gemma's family noted that she was known for being "ditsy" or a bit forgetful throughout her life. She had trouble recognizing objects and people, coordination, ability to tell time, but these weren't much of a health concern.

Her condition got worse during lockdown when she could no longer see or understand what was on her screen at home, which made her stop working. 

After going through several neurological tests, she was diagnosed with dementia.

"She didn't fully understand what was going on, and she thought that she could live a normal life, but she couldn't… before we knew it, she couldn't live unassisted," Ben Illingworth, one of his siblings, said.

"Once she had the diagnosis, it was really only going to go one way. We didn't know it was going to be that quick," he added.

In April 2021, Gemma had a brain scan, which, according to Ben, doctors initially believed might be a tumor.

"Unfortunately, confirmed that there was something quite substantially wrong with her brain."

Gemma never stayed in the hospital and was cared for at home by her family.

To honor Gemma, Ben and Jess Illingworth, their other sibling, participated in the London Marathon to raise funds for the National Brain Appeal and Rare Dementia Support.

What is dementia?

In a previous interview with PhilSTAR L!fe,  Dr. Donnabelle Chu, a neurologist with sub-specialization in dementia and other memory disorders at the Makati Medical Center, said that dementia refers to the presence of cognitive loss, including memory, problem-solving, language, judgment, social skills and behavior, and other thinking abilities that are severe enough to interfere with a person's ability to function in his daily life.

She also underscored that dementia is "not a specific disease but rather is an umbrella term that comprises different diseases or disorders." 

Sadly, there is no cure for it yet. Nonetheless, the neurologist implied that medications that may help slow down the progression of dementia, caused by irreversible dementia, should be given as early as possible.

"Knowing the possible cause of dementia should be detected to specifically manage the underlying cause. Non-pharmacologic interventions or activities may also help slow down its progression," Chu told L!fe. 

The neurology expert further explained that having a trained caregiver is "ideal" but noted that anyone who can take care of persons with dementia, whether formal caregivers or family members, "should be counseled and taught how to handle patients with it and what activities should be done with the patient to prevent behavioral symptoms and progression of the disease severity."