Abstract
Parkinson’s disease is a progressive neurological condition, which means it will cause problems in the brain and the person will deteriorate over time. The number of people diagnosed with Parkinson’s disease in the United Kingdom is about 145,000, with an estimation of around one adult in every 350 developing Parkinson’s disease (parkinsons.org.uk). It is a progressive disease of the nervous system marked by tremors, muscular rigidity and slow and imprecise movement, and normally affects middle-aged and elderly people. This results in impaired capacity, physical and cognitive function decline, and the need of help from others.
Parkinson’s disease is the second most common neurodegenerative disorder after Alzheimer’s disease. The global prevalence of people living with dementia has been estimated to be around 50 million, with 10 million new cases every year (World Health Organization, 2017). The number of people living with dementia is projected to increase to 75.6 million in 2030 and 135.5 million in 2050 (World Health Organization, 2015), and it would seem likely that those living with Parkinson’s disease will also increase.
Consequently, there needs to be more awareness of Parkinson’s disease from an international perspective, and there is an indication of global growth. The reviewed paper provides an Asian perspective of the disease while offering an international perspective on the progression of the disease and the experience of the carers of family members with Parkinson’s disease.
Previous quantitative studies identified by Lawson et al. (2018) have shown that cognitive impairment can be detrimental to the quality of life of people with Parkinson’s disease and their informal carers. Qualitative aspects of the carer experience associated with dementia have been explored and show high levels of burden (Gruffydd and Randle, 2006), symptoms of stress, anxiety and depression (Robinson et al., 2011), and neglect of self-care (Birgersson and Edberg, 2004).
Interestingly, the cultural view of ageing is accepted as a normal process. In many cultures, and particularly in Asian families, there is an expectation for the older adult to be cared for by their family. This familial experience of caregiving is a strong cultural belief amongst many Asian families (Meyer et al., 2017). As such, many cultures rely on family members as the main carers, with many viewing this as an honourable duty and a societal expectation (Kanwar and Whomsley, 2011). The paper under review explores the consequences of these expectations and the experiences of five carers in Indonesia.
This study takes a descriptive phenomenological approach to exploring the experiences of five carers who were family members providing care to a family member who had Parkinson’s disease. Four themes were identified: adaptation to the family member's condition, perceived stressors, the family and social support, and perceived spiritual and cultural meaning.
The study raises important issues about carers and support networks. The cost of caring for someone with Parkinson’s disease has physical and emotional costs for the carer and the family, and where unpaid care is not unaccounted for, and the consequences on society and potential cost for health and social care.