The Impact of Huntington’s Disease on Mental Health

May is a significant month for both Mental Health Awareness and Huntington’s Disease (HD) Awareness, with May 15th dedicated specifically to raising awareness about HD. For many patients and families grappling with a Huntington’s diagnosis, mental health struggles often accompany the physical symptoms. In this blog, we explore the impact of mental health in HD and how we can improve the quality of life for these families.

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Understanding Huntington’s Disease

HD is a genetic neurodegenerative disorder characterized by the expansion of abnormal repeat cytosine-adenine-guanine (CAG) trinucleotide sequences, leading to changes in the HD protein and subsequent brain pathology. Individuals with an affected parent have a 50% chance of inheriting the HD gene, with symptoms typically emerging in middle age. While HD manifests with motor and cognitive symptoms, it’s essential to note that emotional and behavioral changes often precede diagnosis by a decade or more. These changes encompass a spectrum of symptoms including depression, anxiety, irritability, obsessive-compulsive behavior, apathy, perseveration, and psychosis.¹

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The Effect on Mental Health

Research indicates that mental health challenges extend beyond individuals with the HD gene, affecting family members as well. Studies show that HD family members report higher levels of self-reported depression compared to those who are gene-positive, suggesting a broader psychological impact within these families.² While certain symptoms like apathy, disorientation, and obsessive-compulsive behaviors are more prevalent in later HD stages, many emotional and behavioral challenges affect both gene carriers and non-carriers alike, underscoring the significant social and psychological burden experienced by HD families.³

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Risk factors for caregiver distress

Caregivers of individuals with HD face unique challenges influenced by various factors. Frontal lobe behaviors like irritability and obsessive-compulsive behaviors contribute to increased caregiver stress, highlighting the importance of early intervention and monitoring. Depression in patients also exacerbates caregiver distress. As depression worsens, so does caregiver burden and there is concern that depression in patients is interlinked with depression in caregivers.⁴

Care burden intensifies with the progression of HD, particularly in advanced stages, where caregivers grapple with heightened care needs, cognitive decline, and behavioral issues. Typically, patients in later stages have higher care needs to complete activities of daily living like dressing, grooming, toileting, and eating. Additionally, younger caregivers, predominantly women, experience elevated burdens. Caregivers in families impacted by HD are younger than in other neurodegenerative diseases due to the onset of disease in midlife.⁵ These younger and adolescent caregivers also may have the added stress of being at risk of HD. These risk factors are enhanced by the absence of robust social support networks. Multiple studies have found correlations between caregiver burden and poor social support, with the highest burden in sole caregivers.

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Support and Intervention

While clinical research on psychological interventions in HD is limited, promising therapeutic avenues exist. For depression and anxiety, cognitive-behavioral therapy and mindfulness-based stress reduction show potential in managing symptoms. Remotivation therapy offers hope for addressing apathy, using behavioral techniques to simplify routines, create schedules, and increase environmental stimulation.

Irritability is also a common symptom in HD and one of the most burdensome to caregivers. For managing irritability, some approaches may be helpful, including identifying and removing triggers, distracting and redirection, and using rewards to encourage appropriate behavior. For families, family therapy can mitigate interpersonal conflicts to practice de-escalation, which can support caregivers.⁶

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Synapticure's Holistic Approach

At Synapticure, we understand the multifaceted nature of HD and its impact on mental health. Our specialized team comprises neurologists, psychiatrists, and psychologists with decades of experience in managing both the neurological and psychiatric aspects of HD. From medication management to behavioral interventions, we tailor our approach to meet individual needs, offering support for both patients and their families and caregivers. We offer mindfulness groups for patients and their caregivers as an evidence-based approach to managing mood symptoms.

​​Through comprehensive care coordination and family therapy, we aim to alleviate caregiver burnout and foster a supportive environment for all affected by HD with our team of care coordinators, mental health practitioners, and neurologists.

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You are not alone

Huntington’s disease affects the entire family unit, but you don’t have to navigate this journey alone. Synapticure is here to provide compassionate care, guidance, and support every step of the way. Together, we can work towards enhancing the quality of life and fostering resilience in the face of HD-related challenges.