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The Invisible Patient

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Written by Mikkel Allison

ELVIRA JIMENEZ’S VIEW OF DEMENTIA CHANGED when she encountered “Mrs. X,” a woman in her 40s struggling to care for her husband and twin school-age daughters.

“The consequences of dementia go well beyond the effects of the disease on patients,” says Jimenez (MPH ’02), a Fielding School doctoral student in the Department of Community Health Sciences whose dissertation is delving into the mental health implications of early-onset dementia for family caregivers. “These caregivers are also victims of the illness – they are the ‘invisible patients’ whose needs are often unnoticed and untreated.”

Early-onset dementia, which most often takes hold of individuals in their 40s and 50s, presents a significant public health challenge and is striking in that it upends the typical perception of the disease – that of caring for an elderly, frail, forgetful parent. But with an estimated 200,000 people living with early-onset dementia nationally, many of their loved ones are forced into caregiving roles in the prime of their working years, displacing every aspect of their lives.

At the time of Mrs. X’s initial visit to the free clinic at UCLA’s Department of Neurology, where Jimenez works as a senior research staff associate in the Behavioral Neurology program, she was her husband’s primary caregiver. Diagnosed with behavioral variant frontotemporal dementia – an early-onset subtype of the disease – Mr. X became unable to work and exhibited apathy, compulsive behaviors, and decreased hygiene and self-care.

Mrs. X began working to support the family, and at times had to leave her husband alone at home. She lacked support from relatives, and found that there were no formal resources or services tailoring to dementia caregivers’ needs. A year later the disease progressed so rapidly that Mrs. X could no longer manage her husband’s behaviors and he had to be institutionalized in a psychiatric ward in order to receive the care he needed.

“Parents with young children have multiple demands, but if you put on top of that a layer of having to be the primary caregiver of a person with dementia, it just multiplies their needs and complicates things like employment, family, and relationships,” says Jimenez. “That’s going to affect caregivers’ ability to physically take care of themselves, to financially secure their lives and the lives of their loved ones, and to be happy. Many become depressed. Often they don’t have the resources and just can’t handle or manage everything that is coming their way.”

Jimenez’s dissertation research into the mental-health effects of caring for a loved one with early-onset dementia highlights the lack of resources available to these invisible patients, whose wellbeing is closely tied to the quality of life of the people struggling with the disease. She hopes that her research will contribute to better support, services, and targeted patient management to relieve the burden of caregiving and decrease institutionalization.

“One important way to improve the quality of life of patients with dementia,” Jimenez notes, “is to address the needs of the caregiver.”