This qualiative study was part of a wider study of neuropalliative care outpatient clinics and 108 patients with Parkinson’s disease, Alzheimer’s disease or related disorders , and 90 caregivers, took part in interveiws of their experiences of the pandemic.
Four themes were seen:
- Disruption – There were loss of services and support at home and they avoided services, including avoiding placement in assisted living facilities, due to fears of infection
- Increased symptoms and psychosocial needs – Physical inactivity and social isolation led to increased symptoms and psychosocial issues, including depression and hallucinations
- Increased caregiver burden – Services supporting caregivers were restricted and they often had to take on new roles. Caregiver burden and mental health suffered
- The limitations of telemedicine – Although telemedicine was convenient many felt a loss of motivation to continue to take part in virtual visits and they preferred in-person care
The COVID-19 pandemic has shown the importance of healthcare and support at home and the social isolation and inactivity increased issues for patients with neurological disease and their caregivers. Although telemedicine was able to provide some support the retun to in-person care was important and telemedicine should not be seen as a replacment for face to face interactions.
Macchi ZA, Ayele R, Dini M et al. Lessons form the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives. Palliative Medicine 2021; 37: 1258-1266. Doi: 10.1177/02692163211017383