Quality of Life and Neuro-Degenerative Disorders

Diksha Rathi, B.Optom

M. Optom Student, The Sankara Nethralaya Academy, Chennai, India

Introduction

Neuro-degenerative diseases (ND’s) are characterised by a progressive deterioration of brain function with a significantly consequent decrease in quality of life of the patients and their families that specially have a major impact at professional, social and family level of patients and can lead to a complete inability to carry out any type of everyday activity. ⁽¹⁾

Alzheimer’s disease and Parkinson’s disease are the most common neuro-degenerative diseases followed by Huntington’s disease and Amytrophic Lateral Sclerosis. ^(1,2)  According to 2019 estimate ~50 million individuals worldwide suffered from ND’s that resulted in dementia, and this number is expected to rise to 152 million by 2060. ⁽²⁾

Quality of Life

Indicators of quality of life include perceived health and actual health symptoms, satisfaction, cognition, functional impairment, disorder, and well-being. ^(1,3,4) The concept of quality of life encompasses many different aspects of human experience, including physical, psychological, and social dimensions which range from those related to basic needs to the realisation of sentiments and fulfilment. ⁽¹⁾

World Health Organisation (WHO) has developed two instruments to assess the quality of life which are WHOQOL-100 and WHOQOL- BREF. In addition to these other instruments available are WHOQOL-DIS, MSIS-29, PDQ-39 etc.  ⁽¹⁾

In general patients with neuro-degenerative diseases present with certain typical symptoms like weakness, fatigue motor impairment, ataxia, dysphagia, urinary complications, sensory loss, depression, cognitive decline, sleep disorders which are potential contributors to lower health related quality of life. ⁽¹⁾ Reduction in daily activities is likely to negatively affect the perception of labour productivity and many other areas such as self-perception of cognitive status, emotional well-being, communication skills and social stigma.⁽¹⁾ Data suggests, patients with Parkinson’s disease and/ or Multiple Sclerosis present lower levels of Health-Related Quality of Life (HR-QoL) in emotional, physical, and social terms. ⁽¹⁾

HR-QoL of Carers

Carers’ HR-QOL requires additional consideration because these people can greatly minimise the expense and care load that would otherwise fall on health services. ^(4,5) Carers have been found to experience considerable levels of distress as a result of behavioural and cognitive changes along with increased burden of expenses. ^(4,5) Important parts of a caregiver’s life, like their health, free time, employment, and expectations, are affected. ⁽⁵⁾ Caring families reported high rates in family and careers but low rates in leisure and recreation and support from services in terms of attainment and satisfaction. ⁽⁵⁾ A neuro-degenerative condition patient’s behavioural issues, memory issues, and communication difficulties were found to have an impact on family well-being. ⁽⁵⁾

Conclusion

Lack of knowledge regarding neuro-degenerative conditions in society can lead to avoidance, rejection, and acting inappropriately in specific circumstances which hampers the overall quality of life. ⁽⁵⁾

References:

1. Batista, P., & Pereira, A. (2016). Quality of life in patients with neurodegenerative diseases. dimensions, 1(3).
2. Onohuean, H., Akiyode, A. O., Akiyode, O., Igbinoba, S. I., & Alagbonsi, A. I. (2022). Epidemiology of neurodegenerative diseases in the East African region: A meta-analysis. Frontiers in neurology, 13, 1024004.
3. Nehra, A., Sharma, P., Narain, A., Sharma, S., Joshi, G., Bhat, P., Singh, R. K., Rajan, R., Goyal, V., & Srivastava, A. K. (2021). Enhancing Quality of Life in Indian Parkinson’s Disease Patients with Improved Measurement of Psychological Domains: A Perspective. Annals of Indian Academy of Neurology, 24(2), 132–137.
4. Dowding, C. H., Shenton, C. L., & Salek, S. S. (2006). A review of the health-related quality of life and economic impact of Parkinson’s disease. Drugs & aging, 23(9), 693–721.
5. Aza, A., Gómez-Vela, M., Badia, M., Begoña Orgaz, M., González-Ortega, E., Vicario-Molina, I., & Montes-López, E. (2022). Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches. Health and quality of life outcomes, 20(1), 76.