Background Psychological distress is frequently observed in neurodegenerative diseases (NDDs) having a significant impact on function, quality of life (QOL), caregiver burden, and illness cost. As higher psychological resilience can protect against negative outcomes and aid in the successful adjustment to illness, identifying resilience factors is important. Understanding what enhances or lowers psychological resilience allows us to offer support/interventions to people with NDDs and their carers starting early in the disease process. Objective To investigate factors associated with psychological resilience in NDDs by completing a systematic review of relevant studies. Method Five electronic databases were searched for studies relating to psychological resilience in NDDs. Eighteen articles were reviewed using a narrative synthesis approach. Results Studies with varied aims and methodologies were found. The identified factors were categorized into core, internal, and external resilience. Regarding core factors contradicting evidence was found about the relationship between resilience and physical function. Fatigue, however, appears to be associated with less resilience. A limited number of studies focused on pain and demographics. Of internal resilience factors, studies found positive associations between higher resilience and improved mental health, even over time. Resilience appears to correlate positively with various psychological and QOL factors. Importantly, external resilience factors (e.g., social connectedness and intervention) were discovered to be linked to resilience. The evidence for resilience-enhancing intervention suggests that resilience can be modified. Conclusion Various factors were identified to be associated with psychological resilience in NDDs. As resilience appears to be modifiable, it is important to focus on resilience-enhancing interventions for people with NDDs.
Dr Nicolò Zarotti is an academic psychologist interested in neuropsychology and clinical and health psychology, with a particular focus on motor neurodegenerative conditions such as Huntington's disease, Parkinson's disease, and motor neuron disease/amyotrophic lateral sclerosis. Some of his other interests include theoretical and practical research around emotion recognition and regulation, as well as perceptions of control. Dr EmilyMayberry works in the NHS as a clinical psychologist in the Sheffield Motor Neuron Disease Care Centre. She also holds a Clinical Research Academy Fellowship at the School for Health and Related Research (ScHARR) and is an Honorary Research Associate at the Sheffield Institute for Translational Neuroscience (SITraN). She is particularly interested in improving psychological assessment and support for people with motor neuron disease and for those who support them. She has previous experience in other neuropsychology specialties and working in adult mental health and adult autism settings. Dr Noora Ovaska-Stafford is a clinical psychologist working in neurological rehabilitation with a specialist interest in psychological resilience in neurodegenerative diseases. Dr Fiona Eccles is an academic and clinical psychologist whose research focuses on the psychological well-being of individuals with neurological conditions, with a particular interest in neurodegenerative conditions such as Huntington's disease, Parkinson's disease and motor neurone disease.
Background Although cognitive and motor symptoms of Huntington's disease (HD) are associated with disease progression, the underlying causes of psychological symptoms are not as clearly understood. Recent evidence suggests that some mental health difficulties experienced by people with HD are shared by noncarriers within HD families. Accordingly, there is a need to evaluate potential systemic contributors to HD mental distress, to support meaningful interventions for psychological symptoms in people with HD and affected families. Method We used short‐form Problem Behaviors Assessment mental health symptom data from the international Enroll‐HD data set to characterize mental health symptoms across eight HD groups: Stages 1–5, premanifest and genotype‐negative individuals, and family controls ( n = 8567) using chi‐square analysis with post hoc comparisons. Results We identified that people with later‐stage HD (Stages 2–5) had significantly higher apathy, obsessive–compulsiveness, and (from Stage 3) disorientation than the remaining groups at a medium effect size, and that these findings largely held across three measure administrations over time. Conclusions These findings highlight the critical symptoms in manifest HD from Stage 2 onward, but also demonstrate that crucial symptoms such as depression, anxiety, and irritability are present across HD‐affected groups (including noncarriers of the gene expansion). The outcomes highlight a need for specific clinical management of later‐stage HD psychological symptoms, and for systemic support across affected families.
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