Palliative care needs and care giver burden in neurodegenerative diseases: A cross sectional study

• Main Authors: Zacharias Lithin, Priya T Thomas, G Manjusha Warrier, Adhin Bhaskar, Saraswathi Nashi, Seena Vengalil, Kiran Polavarapu, Preethish Kumar, Ravi Yadav, Suvarna Alladi, Nalini Atchayaram, Pramod K Pal
• Format: Article
• Language: English
• Published: Wolters Kluwer Medknow Publications 2020-01-01
• Series: Annals of Indian Academy of Neurology
• Subjects: caregiver burden; neurodegenerative; palliative care needs
• Online Access: http://www.annalsofian.org/article.asp?issn=0972-2327;year=2020;volume=23;issue=3;spage=313;epage=317;aulast=

Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases. Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship. Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden. Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.