Young adult caregiver facing early-onset dementia challenge

Unseen Struggles: How Young Adults Cope When a Parent Has Early-Onset Dementia

Kai Mendoza in Health & Wellness December 2025 • 4 min read.

"Navigating adulthood while parenting a parent: a look at the hidden challenges and needs of adult children facing young-onset dementia in their families."

Imagine navigating your twenties—launching a career, building relationships—while simultaneously watching your parent, not grandparent, grapple with dementia. Young-onset dementia (YOD), diagnosed before age 65, throws a wrench into the expected family dynamics. While much attention is given to elderly patients and spousal caregivers, the experiences of adult children are often overlooked. How does it feel to see a parent's personality change, their memories fade, while you’re still figuring out your own path?

Research confirms that these adult children face unique challenges. They're not just dealing with the emotional strain of a parent's illness, but also the disruption of their own developmental milestones. Limited research explores how these children experience this role reversal, and what support they need to navigate such a complex situation. This article sheds light on their experiences, drawing on a study that uses the power of metaphor to understand their hidden struggles and unmet needs.

By understanding the metaphorical expressions and challenges, service providers can better tailor support and develop specialized services. It's time we acknowledge and address the significant impact of YOD on the lives of these young adults.

The Metaphorical World: Understanding Their Experience

Young adult caregiver facing early-onset dementia challenge

A recent study explored the lived experiences of adult children (aged 18-30) of parents with YOD. Through in-depth interviews, researchers uncovered recurring metaphors used by these young adults to describe their situation. These metaphors weren't just figures of speech, but powerful indicators of their emotional and psychological landscape.

The researchers identified four core metaphors that captured the essence of their experiences:

"My parent is sliding away": Reflecting the gradual loss of the parent they once knew.
"Emotional chaos": Representing the turmoil of conflicting emotions and disrupted life plans.
"Becoming a parent to my parent": Highlighting the role reversal and increased responsibility.
"A battle": Symbolizing the struggle to access support services and navigate the healthcare system.

These metaphors illuminate the profound impact of YOD on the lives of adult children, impacting relationships, personal development, and access to vital support.

Turning Insights into Action: The Path Forward

The study underscores a critical need: adult children of parents with YOD are an underserved population. They require tailored support systems that acknowledge their unique challenges and promote their well-being. A formalized system is needed where these young adults can easily access information, counseling, and peer support.

Healthcare providers and social workers need to be trained to recognize the metaphorical language these children use, understanding that these metaphors represent deep emotional realities. By truly listening to their stories, professionals can provide more empathetic and effective support.

Ultimately, supporting these young adults benefits not only their well-being but also the care of their parents. By addressing their needs, we can empower them to navigate this challenging journey with greater resilience and a stronger sense of self.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.2147/jmdh.s84069, Alternate LINK

Title: Adult Children Of Parents With Young-Onset Dementia Narrate The Experiences Of Their Youth Through Metaphors

Subject: General Medicine

Journal: Journal of Multidisciplinary Healthcare

Publisher: Informa UK Limited

Authors: Aud Johannessen, Knut Engedal, Kirsten Thorsen

Published: 2015-05-01

Everything You Need To Know

What makes young-onset dementia (YOD) different from dementia in older adults?

Young-onset dementia (YOD) is diagnosed before the age of 65. This differs significantly from late-onset dementia, which primarily affects older adults. The early onset creates unique challenges for younger families, especially adult children who are navigating their own life milestones while simultaneously caring for a parent experiencing cognitive decline.

What are some common metaphorical expressions used by adult children to describe their experiences with a parent who has young-onset dementia?

The study identified key metaphors illustrating the experiences of adult children. These include "My parent is sliding away", capturing the gradual loss of the parent they once knew; "Emotional chaos", representing the turmoil and disrupted life plans; "Becoming a parent to my parent", highlighting role reversal; and "A battle", symbolizing the struggle to access support services.

What are the key challenges faced by adult children when a parent is diagnosed with young-onset dementia?

Adult children often experience significant emotional strain, disruption to their personal development, and difficulties in accessing appropriate support services. They face a role reversal, becoming caregivers for their parents while simultaneously trying to establish their own careers, relationships, and independence.

What kind of support systems are needed for adult children of parents with young-onset dementia (YOD)?

The study highlights that adult children of parents with young-onset dementia are often an underserved population. There is a need for tailored support systems that acknowledge their unique challenges. Formalized systems are needed to help these young adults easily access information, counseling, and peer support to promote their well-being.

What implications do metaphors such as "My parent is sliding away" and "Becoming a parent to my parent" have on adult children?

The metaphorical expression "My parent is sliding away" suggests the gradual loss and fading of the parent's personality and cognitive abilities. This impacts the adult child's sense of identity and connection to their parent. While the metaphor of "Becoming a parent to my parent" describes the shifting dynamics in the relationship, where the child takes on increasing responsibility for the parent's care, requiring emotional maturity and practical skills.