Given that Parkinson’s Disease is a progressive condition with no known cure, individuals experience declining function over time, and often require assistance from family members as the disease progresses. It is widely acknowledged that family members, commonly referred to as informal caregivers, play a vital role in the care of people with Parkinson’s, providing social, physical, and psychological support over an extended period of time. Although for some individuals, caring for a relative can be a rewarding experience, providing care over an extended period of time often results in adverse effects for the care-provider. A critical review of recent research has documented caregiver burden in Parkinson’s including depression, stress, strain, fatigue, and mortality. Providing care to a person with a progressive chronic disease can affect all aspects of a caregiver’s life, from social isolation to worsening of their psychological health. It is not surprising therefore that a significant proportion of caregivers (between 12%-50%) reach the diagnostic threshold for anxiety and depressive disorders, and up to 50% report experiencing exhaustion and depression that is linked to their caregiving role.

Although a number of studies have contributed to the knowledge base of caregiver burden in Parkinson’s only one published study has examined the caregiver experience within Southwestern Ontario. Results identified that the primary source of caregiver burden for the 5 participants (all of whom were women) was derived from mental aspects of caregiving, with an emphasis on social isolation and safety concerns of the caregiver. While recommendations were made advocating for more education to be directed towards coping with these mental stressors, recent evidence produced by our research team suggests that caregivers within Southwestern Ontario remain underserviced and/or lack adequate accessibility to information and caregiver supports.

Given these findings, the overarching goal of the proposed research is to gain a current understanding of the unique burden and unmet support needs experienced by caregivers of individuals with Parkinson’s in Southwestern Ontario, and to identify the current availability (or lack thereof) of resources to support this at risk population. To achieve this, the current research aims to: i) explore the psychosocial implications and lived experience of Parkinson’s in a day-to-day context from the perspective of caregivers, and ii) locate resources that are currently available to support Parkinson’s caregivers.

The research to be undertaken will be carried out in two phases. Phase I will focus on capturing what caregivers identify as their prominent unmet support needs (needs assessment). To accomplish this, an electronic caregiver survey will be distributed to the Parkinson’s caregiver community at large as a means to gain a broad understanding of the nature and extent of challenges/needs experienced by caregivers across Southwestern Ontario.  This phase will also consider the in-depth lived experiences of 10-15 caregivers of individuals with PD. Phase II will determine the current presence of, and access to, resources and services for caregivers of individuals with PD in Southwestern Ontario (environmental scan). In this phase, resources available from key organizations will be reviewed, and interviews will be conducted with key informants to obtain additional detail and/or an adequate description of each resource.

If you are an informal care provider for someone with Parkinson’s disease and would like to participate in, or have questions about this research please contact Dr. Jeffrey Holmes via email: [email protected] or telephone: 519-661-2111 x88967