Young People Caring for Huntington’s Disease Parent Worry ‘This Could Be Me’

Taking care of parents with Huntington’s disease evokes thoughts of “this could be me” in young caregivers and affects their planning for predictive genetic testing, a study shows.

The study, ““This could be me”: exploring the impact of genetic risk for Huntington’s disease young caregivers,” was published in the Journal of Community Genetics.

Family members, including children or adolescents, often are the caregivers of patients with Huntington’s disease. Previous studies have highlighted the burden of these young caregivers — who frequently are involved in both physical tasks and management of the psychological state of the Huntington’s patient and other family members — is similar to that of adult caregivers, in terms of emotional distress, social restrictions, and financial concerns.

These young caregivers often feel invisible and under-acknowledged, and the stigmatizing nature of Huntington’s disease and the secrecy around it further contributes to the youths’ inability to be seen and heard.

Also, they not only feel the burden of the disease because of the dependence of their parent, but also because they know they have a 50 percent risk of having inherited the disease. However, the association between the care-giving role and perception of genetic risk remains unexplored.

Researchers now have evaluated the interactions between young caregivers’ perception of genetic risk, their caregiving experience, and their thoughts about undergoing predictive genetic testing.

The team recruited 13 young caregivers (ages 15-25) of a parent with Huntington’s disease (nine being alive, and four having passed within the previous 18 months), from two Huntington’s disease youth groups and local support groups. Eligible participants had to be aware of their inherited risk of having the disease, but could not have undergone genetic testing.

The participants (11 girls and two boys) were interviewed in-person, by phone, or by video conferencing, exploring four domains: learning about the diagnosis and genetics of Huntington’s disease; caregiving role; genetic risk and caregiving; genetic risk, caregiving, and predictive genetic testing.

The results showed the caregivers often faced “this could be me” thoughts, which they tried to suppress while providing care to their sick parent. Also, their caregiving experience had a greater effect on their perceived genetic risk, rather than the opposite, and it either made the risk scarier — as they closely witnessed the devastating effects of the disease — or lessened — due to an increased sense of preparedness.

When asked about plans to undergo genetic testing, all but one participant said they had plans to do it sometime in the future and agreed that their caregiving experience had influenced how they felt about it.

“By being so close to the manifesting symptoms, they felt like they knew what was potentially “down the line” intensifying the perceived weight of this decision,” researchers wrote.

The effect of caregiving experience on the decision-making of undergoing or not a genetic test also was supported by the participants’ reports of low interest of their non-caregiver siblings to undergo the test.

“Our findings suggest that the genetic risk colors the caregiving experience by evoking feelings about the future and a potential diagnosis of HD, in addition to impacting plans for predictive testing,” researchers added.

The team believes this type of information may help genetic counselors to better understand the background and knowledge of these individuals when seeking genetic testing, and to meet their clinical and psychological needs in a pre-test genetic counseling session.

“Genetic counselors may concentrate less on the details of the disease and more on facilitating testing decision-making, assessing support needs, and making proper referrals, when necessary,” the team suggested.

They also noted that additional and larger studies are required to clarify whether these results reflect the general population of young caregivers of Huntington’s patients, and to assess how undergoing genetic testing would meet young caregivers’ needs.

Future studies also should focus on the recognition and support currently given to young caregivers by healthcare providers, and to develop methods of improvement on these areas.