Parkinson’s disease (PD) is the fastest-growing neurodegenerative condition in the world.
With over 10 million people living with the disease globally and nearly 90,000 new diagnoses each year in the United States alone, the numbers are stark, and they are rising, not only due to an ageing population, but also environmental and diagnostic factors.
As the medical community continues to pursue new treatments and pharmaceutical advances, it’s time we broaden the conversation. Because what many people with Parkinson’s need is not just the pill, it’s a plan that recognises the whole person. And crucially, the caregiver who is standing beside them.
The Invisible Backbone: Caregivers in the Parkinson’s Journey
Caregivers, often spouses, children, or close relatives, provide critical physical and emotional support, manage medications, assist with mobility, and advocate for their loved ones within healthcare systems. But while their contribution is monumental, it is also largely undervalued and under-supported.
Research shows that caregivers of people with Parkinson’s face high levels of physical, emotional, and psychological strain, often resulting in burnout, depression, and social withdrawal. Cognitive decline and psychiatric symptoms in the person with Parkinson’s are particularly linked to increased caregiver burden.
Many caregivers express feelings of invisibility in the healthcare process, a sense that they are expected to give endlessly, without having their own needs addressed.
Incorporating Caregivers into Care Plans: A Call to Action
Person-centred care must extend beyond the patient and actively include the caregiver. Why? Because when caregivers receive support, patients fare better, and the sustainability of home care improves.
Some key interventions include:
- Routine assessments of caregiver well-being, to flag early signs of stress or depression
- Educational support, including training on how to manage PD symptoms and access resources
- Peer support networks, which reduce isolation and offer practical, emotional help
- Respite services, giving caregivers time to rest and recharge without guilt
Studies show that when caregivers have support, they experience lower levels of depression, better physical health, and a stronger ability to cope, all of which positively impact the person with PD.
Conclusion: The Future of Parkinson’s Care Must Be Shared
As we face this growing neurological crisis, we must look beyond the pill. Care should not be seen as a one-way street leading solely to the patient’s needs. It’s a shared path, and caregivers must no longer walk it unseen.
If we truly want to improve the lives of those affected by Parkinson’s, we must include and empower those who care for them. Not as an afterthought, but as essential partners in care.
Because healing doesn’t happen in isolation, it happens in community.
References:
1. Parkinson’s Foundation. Statistics.
https://www.parkinson.org/understanding-parkinsons/statistics
2. Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. (2006). Caregiver-burden in
Parkinson’s disease is closely associated with psychiatric symptoms, falls, and
disability. Parkinsonism & Related Disorders.
https://doi.org/10.1016/j.parkreldis.2006.02.018
3. Han JW, Jeong HT, Park JY, et al. (2015). Caregiver burden in Parkinson’s disease is
closely associated with patient and caregiver psychosocial factors, especially
depression. Journal of Neurology. https://doi.org/10.1007/s00415-015-7656-1
4. Family Caregiver Alliance. Parkinson’s Disease Caregiving.
https://www.caregiver.org/resource/parkinsons-disease-caregiving