One of the genetic conditions that leads to developmental difficulties like learning challenges, behavioural troubles, and intellectual incapacity is Fragile X syndrome. Fragile X syndrome can potentially result in autism spectrum disorder (Centres for Disease Control and Prevention, 2023). The broad set of research is mostly based on the people with the syndrome, but the most affected population, like their caregivers, is left out of the discussion. Their efforts to take care, manage, raise, or assist people with syndrome make them vulnerable to mental tiredness, emotional drain, and physical exhaustion. This article sheds light on the caregiver’s hardship and burnout in the case of Fragile X syndrome.
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Overview of Fragile X syndrome
This disorder results from a genetic mutation on the X chromosome, which leads to insufficient or no amount of a particular protein associated with brain development. This protein is called Fragile X mental retardation protein, required for brain development (Stone et al., 2023). Men are seriously impacted as compared to women, and it happens because of the X-linked inheritance pattern.
The symptoms are hard to focus, hostility, recurring behaviours, and learning impairments. Taking care of them, especially children with FXS, creates a lot of pressure of responsibilities that automatically come on parents, caregivers. This is challenging to fulfil the requirements of all-embracing care, special education, interventions, and therapies.
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What is Caregiver Burnout?
Burnout refers to the state in which people feel emotionally drained; their motivation to achieve goals is reduced, and overall performance is hampered (APA, 2023). The mental, physical tiredness, and fall short of emotional fatigue all lead to different approaches toward people with various disabilities. They non-intentionally withdraw their involvement from the caregiving process.
It happens when caregivers try to do more than they are financially or physically able to do, or when they do not get the assistance they require. Other factors also contribute to the issue of burnout that should be taken into consideration while discussing this, those factors such as unreliability, anguish about intellectual disability, absence of support, and other structural problems.
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Burden on families
1. Mental troll
Due to their high susceptibility to environmental cues, children with FXS are hostile and agitated at home, which causes chaos in the family setting. It is resulting in emotional and physical exhaustion. Stress and depression are more prominent determinants of being caregivers and parents of people with FXS than for other ordinary children or children with developmental disorders. (Bailey et al., 2008). Mothers of kids with FXS often feel liable, especially if they are carriers of the gene themselves. Caregivers might feel melancholic about why this happens to them only or might anticipate future obstacles. In this emotional landscape, anxiety and depression often go hand in hand.
2. Physical and Financial Burden
Their caregivers have to give assistance in basic activities like feeding, sleeping, and active engagement in daily life. This might be due to their learning disability or other adaptive issues. But, this might stretch the caregiver’s physical capacity for day and night. Because of this, individuals were more likely to feel tired all the time, experience body fatigue, and be under a lot of stress. The caregiving responsibilities cost more than some people’s family income, and that can be another factor that leads to frustration. Expenses are exponentially increasing in the overall process, such as pharmacological bills, therapy session charges.
3. Social Isolation
Social support is the most important thing to blend into society and carry on daily life functioning. Because of the stigmatised population and lack of knowledge about these types of intellectual and developmental impairments, the caregivers feel socially isolated. For example, individuals avoid talking to them and family members do not ask them to festivities.
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Liable Factors that contribute to burnout
- Severity of behavioural issues: Caregivers of children with more serious behavioural problems tend to feel more stressed.
- Lack of professional support: Lack of professional services, therapists, other experts’ guidance, or psychoeducation can evoke more confusion and issues. This unaware approach creates more vulnerability to stress, anxiety.
- Caregivers themselves are with FXS, then for them it is difficult to manage their symptoms and their children’s symptoms (Roberts et al., 2009).
- The conventional perception of gender roles as caregivers of their children has imposed more pressure and responsibilities on mothers, which can cause more stress, a physical toll on mothers, and they might experience burnout.
What actions should be taken collectively?
Significant solutions have been found from those caregivers who are strongly supported.
- The family members, friends, and community circle or support groups can reduce caregiver burnout.
- The caregivers should speak openly about the conditions and dispel the misconceptions. So, increasing knowledge and advocacy can help induce self-confidence, which can improve their mental or physical health.
- Caring for others hinders the opportunity to take care of yourself, but it is also necessary to take advice from therapists, fostering self-love in the form of small breaks, doing favourite activities. This all can stop them from sinking into an emotional burden.
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Conclusion
The caregiver’s role in the lives of those with Fragile X syndrome is a most compassionate, understanding, empathetic, and loving approach. This journey is all about giving love to others with joy, but at some points, they also feel drained and exhausted. So, it is the most mentally and emotionally demanding job, which is not always considered by society and their loved ones. Caregiver burnout is a worthwhile issue to discuss that affects many families, and harmonious relationships, mental well-being. This should be resolved through adaptive strategies, allowing structural changes, and social support. Because of this, they can provide services to people who need them.
FAQs
1. How does fragile X syndrome affect the family?
The families of people with FXS face challenges in daily life. In those challenges, family or social support is also low, and they have to go through social isolation. Most of the parents struggled to find appropriate services, therapists. Economic burden is another element affecting the low SES families. Others struggle with the behavioural and communication challenges that come with FXS.
2. What is the honeymoon stage of caregiver burnout?
This is the beginning of their journey. New experiences excite the caregivers. They feel optimistic and curious.
3. What are three signs of caregiver stress?
Feeling overburdened and anxious all the time, being physically tired and having trouble sleeping, and losing interest in once-enjoyed activities are three indicators of caregiver stress.
References +
American Journal of Medical Genetics Part A, 146A(6), 720–729. https://doi.org/10.1002/ajmg.a.32220
Bailey, D. B., Sideris, J., Roberts, J., & Hatton, D. D. (2008). Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis. American Journal of Medical Genetics Part A, 146A(6), 720–729. https://doi.org/10.1002/ajmg.a.32240
Centers for Disease Control and Prevention. (2023). What is Fragile X syndrome? https://www.cdc.gov/ncbddd/fxs/facts.html
Stone, W., Basit, H., Shah, M., & Los, E. (2023, October 28). Fragile X Syndrome – StatPearls. NCBI. Retrieved July 27, 2025, from https://www.ncbi.nlm.nih.gov/books/NBK459243
Roberts, J. E., Bailey, D. B., Jr, Mankowski, J., Ford, A., Sideris, J., Weisenfeld, L. A., Heath, T. M., & Golden, R. N. (2009). Mood and anxiety disorders in females with the FMR1 premutation. American journal of medical genetics. Part B, Neuropsychiatric genetics: the official publication of the International Society of Psychiatric Genetics, 150B(1), 130–139. https://doi.org/10.1002/ajmg.b.30786
