Financial Distress and Wellbeing of People with Parkinson's and Their Informal Caregivers: Evidence from the United Kingdom
Authors: Gumber Anil , Bulsari Smruti 
Published: September 2024

Background: Parkinson’s Disease (PD) is a long-term condition, which is more common among people aged 65 years or more. People with Parkinson (PwP) tend to lose motor functions and find themselves in more fatigue and pain, sometimes leading to anxiety, distress and in extreme cases, even depression. So far, there is no cure for PD and they need support from family members, healthcare professionals and carers, as the disease progresses. A large proportion of carers for PwP are their spouses. Progression of PD can result in loss of employment, reduced work hours or premature retirement, for both PwP and their carers. This poses a huge financial burden as income reduces on one hand, and expenses increase on the other. There is a lack of evidence on the societal costs of Parkinson&#039;s disease, and this study tries to fill that gap.

Objectives: To examine the impact of financial distress on quality of life (QoL) and wellbeing of PwP and their carers in the UK.

Methods: A mix of online and postal, cross-sectional survey was administered, which received responses from 853 respondents, out of which 776 were PwP and 546 were carers. The survey sought data on management of the socioeconomic, health and living conditions of PwP and their carers. Net effect of financial distress (cost of healthcare use, non-health expenditure, societal costs and other direct / indirect cost components) on QoL (and VAS scores) as well as wellbeing scores (life satisfaction and happiness scores) of PwP and their primary carers are estimated using simple linear regression models.

Results: Financial burden of treatment increase whereas quality of life and wellbeing of PwP decrease with progression of PD. Similar association but of a milder magnitude is observed on quality of life of their primary carers. A strong negative association is found between quality of life of PwP, with financial burden, while holding for demographic and socioeconomic factors, and for disease progression and treatment. The QoL of carers increase up to a financial burden threshold, before it starts declining. This could be because of the increased expenditure in initial phases is associated with improved activities of daily living and lesser reliance on carers. Financial distress is more pronounced among PwP having annual income below £20,000. Despite a small representation of persons from ethnic minority (5 per cent representation), it is observed that the impact of financial distress could be more pronounced on PwPs from other ethnicities. Also, it would be more on women than on men, irrespective of ethnicity.

Conclusion and Policy Implications: Cost of care cuts both ways, reduced or lost employment as well as increased expenses on healthcare. This results into a considerable financial distress and deterioration in quality of life and wellbeing of both PwP and carers. Most carers are spouses of PwPs, thus their physical and psychological health and wellbeing is found to deteriorate with the progression of PD due to increased burden of care. Therefore, informal / family carers should get support in the form of respite care. This can help revitalise their energy and psychological wellbeing. Financial distress indicators need to be explored further.