Caregiver stress can have a range of negative effects, such as a decline in physical health, an increase in mental health problems, and a decrease in quality of life. It can also lead to increased financial costs for the individual, family, and health care systems, making it a public health issue. The burden on caregivers is the result of the multiple physical, psychological, social, and financial stressors associated with providing care. This burden is particularly high in neurodegenerative diseases due to the progressive disability that can occur over time. In a survey of caregivers of people with Parkinson's disease, 40% reported that their health had worsened due to the provision of care and 65% reported that their social lives had suffered.
Compared to ALS caregivers, Parkinson's disease caregivers reported a higher level of isolation from loved ones. This is likely due to the fact that patients with Parkinson's disease are usually older at the time of death, have lived longer than many of their peers, have often suffered a prolonged chronic course of dementia, and are more likely to die in nursing homes because no one can care for them in their own homes. In addition, the caregiver's elderly mother and aunt relied on her help, as did her father who resided in a nursing home after becoming disabled (surgery). In this context, determining the context of the care experience may begin with an expanded history and physical examination of the patient, including evaluation by the caregiver. Family caregivers are essential partners in providing complex health care services, and this case exemplifies the burden and stress associated with the caregiver during cancer treatment. Caring for a person for the first 6 months after a stroke has been found to be a significant burden.
This burden increases as the amount of time spent on caregiving tasks increases and with the presence of anxiety between the caregiver and stroke survivor. The dominant conceptual model for providing care assumes that the onset and progression of chronic diseases and physical disability are stressful for both patient and caregiver and can be studied within the framework of traditional models of coping with stress. Understanding how to mitigate negative consequences and improve the benefits of care delivery will lead to a better quality of life for both caregiver and care recipient. Caregivers of people with dementia not only spend many more hours a week providing care than caregivers who are not people with dementia, but they also report greater work complications, tension on the part of the caregiver, mental and physical health problems, reduced time spent on leisure activities and other family members, and family conflicts. The demands and negative impacts of providing care to people with dementia are generally higher than those of care not related to dementia. Caregivers report that they spend too much time on personal care needs of their loved ones and that they are not satisfied with insurance coverage for home and community services they need. Providing patients and caregivers with practical information about patient care, maintaining family and marital relationships, and emphasizing personal care can help caregivers be more prepared and less anxious.
While stressful events are unavoidable, it is possible to identify those at greater risk for negative outcomes, assess how much the caregiver's life and health may be adversely affected, and recommend interventions that can mitigate these negative repercussions. If a patient shows up for a primary care visit and is determined to work as a caregiver for someone with cancer, it can be assumed that the caregiver will be affected. Outcome variables for the caregiver include psychological distress and burden (caregiver burden), psychological and physical morbidity, as well as patient outcomes such as institutionalization or death.
