The self-management balancing act of spousal care partners in the case of Parkinson’s disease

Abstract

This research shows that care partners want to retain social participation and provides support for the importance of addressing the socio-emotional needs of care partners of people with a chronic disease. Interventions that guide care partners to take care of their spectrum of needs may lead to healthier, positive relationships. Implications for rehabilitation The focus of rehabilitation is often on the person diagnosed with the chronic condition. Living with and caring for someone with a chronic illness, such as Parkinson's disease, can lead to limitations in activity and social participation for the care partner. Including care partners in the rehabilitation process is key to helping maintain their health and well-being. Learning caregiving and self-management strategies may help care partners support their loved ones while staying socially engaged.

Social role functioning in Parkinson's disease: A mixed‐methods systematic review

“…Some studies focusing on this issue have been published, but we considered caregiver outcomes to be beyond the scope of this review. 71,72 4.3 | Implications for research, policy, and practice Our review identified several correlates of impaired social role performance in PD, including disease severity, anxiety, depression, and cognitive impairment. However, less attention has been paid to interventions or methods of preserving or improving social role functioning.…”

Multidisciplinary care for people with Parkinson’s disease: the new kids on the block!

“…To ascertain that patients can actually make the most of participatory medicine, specific educational programs may have to be developed to train and support patients in assuming an active new role in healthcare [22]. Importantly, such self-management strategies should focus not only on patients, but also on the caregivers [23].…”

Long-Term Partnerships in Lewy Body Dementias

“…In addition, due to care provision many care partners may be unable to do their usual daily tasks, activities and hobbies, and may receive insufficient social support from friends and family. Having hobbies, being socially active and receiving social support are important because they could protect against worsening of health and well-being [66,70,92]. Physically, care partners may experience deterioration in health [90], health-related quality of life [5,93,94] and greater fatigue [79].…”

“…In terms of mental-emotional aspects, care partners may encounter negative feelings, such as frustration, sadness, anger, resentment, guilt, worry [75,95], and feel overwhelmed, stressed, strained and burdened [72,74,77,78,83,84,92,[96][97][98]. Care provision may significantly increase anxiety and depression [89,93,95] and lower care partners' mental health [93].…”

“…Moreover, lower levels of mental health are also predicted by care recipients' motor, psychiatric and cognitive symptoms, although drawing definite conclusions about what predicts mental health remains difficult due to the variability of the measures, inconsistent findings and lack of evidence [70]. Importantly, despite the care partners' own health needs, they felt they had to stay healthy as long as possible to be able to care for and support the care recipients [75,92]. This presents major physical, financial, emotional, mental and social challenges for care partners to continue in their role whilst taking care of themselves.…”