Family Caregiver Guidance
A Great Responsibility at a Young Age: Growing Up with a Family Member who has Dementia
Zeynep was in her final year of high school... Amid the stress of exams, she was experiencing an exciting phase of her life. However, when she came home in the evenings, what awaited her was not just her textbooks, but also her father's vacant stares and repeated sentences. Her father had dementia. While her peers were attending school trips or birthday parties, she found herself explaining over and over where her father's keys were, and spending sleepless hours to make sure he didn't accidentally leave the house at night.
This story resonates in the lives of thousands of young people in Turkey and around the world. When thinking of dementia, we usually picture older adults, and the term 'caregiver' typically evokes middle-aged adults; yet, the truth is that young people also often bear the responsibility of living with or even caring for a family member with dementia. So what do these invisible heroes experience? What is the significance of young people’s role in caregiving—psychologically and socially? What does science say on this matter, and how can one cope? Read on for answers to all these questions.
What is Dementia? A Brief Overview
Dementia is not a disease in itself, but a set of symptoms—a syndrome. It progresses with memory loss, decline in cognitive abilities, lack of emotional control, and deterioration of social skills. The most common subtype, Alzheimer's Disease, accounts for about 60-70% of all dementia cases. According to the World Health Organization (WHO), around 55 million people worldwide are living with dementia, with 10 million new cases diagnosed annually.
Youth and Dementia: The Invisible Distribution of Roles
When we talk about family caregivers, most people picture adults like mothers or fathers. However, in reality, a study in the UK found that there are about 700,000 young people aged 12-17 who are defined as "young caregivers."1 Although definitive numbers are unavailable for Turkey, the extended family structure and rising average age mean increasing numbers of young people inevitably find themselves carrying these responsibilities each year.
Household caregiving load: Young people often feel obligated to meet the daily needs of family members with dementia, watch over them, and act as a bridge in household communication.
Emotional burden: Most experience emotional ups and downs with the patient, sometimes feeling alone. This can become a significant source of stress for their mental development.
Social isolation: Young people who are unable to spend as much time with their peers as before may fall behind both educationally and socially.
Dementia and Family Dynamics: The Changing Role of Youth
When dementia is diagnosed in a family, the family structure effectively gets rewritten. A formerly healthy parent or grandparent suddenly becomes "in need of care." In many families, the caregiving duty is assigned to adults, but the role of young people is often overlooked or simply accepted as "they’re already at home."
In this situation:
Young people undertake the role of emotional support within the family,
They share daily responsibilities,
They simultaneously grapple with the challenges of dementia and the identity issues that come with adolescence.
Moreover, modern research shows that young people engaged in such caregiving processes develop empathy, patience, and responsibility at an earlier age.2 However, alongside these positive aspects, it has also been shown that young people who lack psychological support are at higher risk for anxiety, depression, and dropping out of school.
Challenges Faced by Young Caregivers
Lack of Awareness and Knowledge: Young people without knowledge of dementia may be more likely to take changes in the patient personally. It can be hard to understand why their loved one is so forgetful or why sudden outbursts of anger are a consequence of the illness.
Academic Challenges: Young people who spend most of their time caregiving or supervising at home may have little time for their studies or social activities. One study found that young caregivers showed 20% lower academic achievement and school attendance.3
Impact on Emotional Health: Emotions they can’t understand or cope with can turn into recurring guilt, inadequacy, or anger. They may mourn the gradual loss of a loved one while struggling to manage the current situation.
Sacrificing Their Own Future: Some young people are forced to postpone their dreams, or even university education, due to family responsibilities.
“There are times I see my father not as an adult but as my child. Some days we spend crying together. While my friends are out at night, I’m thinking about whether my dad has locked the door.”
— Words of a 17-year-old caregiver
Mental Health of Young Caregivers: What Does Science Say?
Numerous studies have shown that young caregivers are more susceptible to issues like depression, anxiety, and burnout. In particular, interventions such as peer support groups, family therapy, and psychosocial support have been shown to significantly reduce these risks.4
The following findings are notable:
According to a survey in the UK: 48% of young caregivers reported that although they requested psychological support, they did not have sufficient access to it.5
College attendance rate: The risk of dropping out of school is three times higher among young people who care for family members with dementia.
Sleep and concentration problems: More than 60% of young people providing long-term home care report sleep disturbances.
Effective Coping Strategies for Young People
Knowledge and Awareness: Learning about dementia from reliable sources and understanding that the behavioral changes experienced are not personal can substantially ease the caregiver’s burden.
Support Groups: Special caregiver groups established for young people via smartphone applications or social media offer opportunities for sharing and support.
Open Communication Within the Family: Regularly expressing their feelings and needs to family members can help young people ease their burden.
Professional Help: Receiving professional support from school counseling services, psychological consultants, or public health centers strengthens young people's emotional resilience.
Protecting Personal Time: Allocating time for hobbies and social activities is critical for young people's mental health.
What Should Families and Adults Do?
In families where there is a member with dementia, young people should not be seen solely as "helpers." They also need rest, support, and personal time. It's important that adults pay attention to the following:
Do Not Hide the Truth: Do not conceal the illness from young people; share information using appropriate language.
Balance Task Distribution: Fairly sharing household responsibilities can ease the emotional burden on young people.
Listen to Young People: Take their expressed fears or concerns seriously and seek solutions together.
Build a Loose Support Network: Do not hesitate to seek help from extended family, neighbors, or community services.
The Role of Schools and the Community
Schools, counseling services, and community organizations can make a major difference by recognizing young caregivers and offering them seminars and psychosocial support tailored to their needs. Within the Ministry of Education's "Support at School" programs, it is recommended for guidance counselors to work with young caregivers and organize awareness seminars.
A Different Side of Being a Young Caregiver: Empowerment and Solidarity
Although the burden may seem heavy, research among young caregivers shows increased levels of empathy, responsibility, and maturity. Some young people dedicate themselves to helping others through this experience, while others later pursue careers in health or social services.
Therefore, we should look at young caregivers not solely through stories of sadness and exhaustion, but also through those of empowerment and solidarity. They are the unseen but true heroes of life.
Useful Resources and Support Groups
Final Words: Being Seen and Valued
Living with dementia is not just an issue for elderly individuals or adults. Young people shoulder multiple burdens on their own developmental journeys, and in doing so, they grow up to be sensitive, strong, and resilient individuals. It is everyone’s responsibility to recognize them and pay attention to their feelings and needs.
If you are a young caregiver—or know someone who is—know that you are not alone. Being seen and supported lightens the load; solidarity creates new hope.
References
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