Caregiver Burden and the Nonmotor Symptoms of Parkinson's Disease

Abstract

Parkinson's disease has traditionally been considered as primarily a motor disorder (Chaudhuri & Schapira, 2009). It is clear however that it is the burden of the nonmotor symptomatology which impacts significantly more highly on caregiver burden and quality of life (Benavides, Alberquerque, & Chana-Cuevas, 2013; Martinez-Martin, 2011). As Parkinson's disease advances there is an almost inevitable accrual of nonmotor symptoms alongside the motor aspects of the disease. Patients as their disease progresses require increasing support and this is not infrequently provided by an informal caregiver, most typically a spouse or family member (Martinez-Martin, Forjaz, Frades-Payo, et al., 2007). The role of the caregiver while being emotionally, physically, and psychosocially demanding is also costly and time intensive. The cost of care is typically borne by the family and one survey has estimated that the average caregiver spends an average of 22h per week fulfilling their role. The caregiver has a unique and privileged view of the patient's condition and often due to symptoms of apathy, cognitive impairment, and depression can provide a more accurate appraisal of symptoms and treatment effect. It is therefore imperative that the caregiver is involved, where possible in clinical appointments and treatment decisions. During this chapter the impact of nonmotor symptoms on the caregiver will be highlighted and the need for early and continued collaboration with the caregiver reiterated. The influence of certain key nonmotor symptoms on caregiver burden will be explored in more detail and the narrative will be punctuated with carer reflections as experienced by Jon Hiseman while caring for his wife Barbara, a world renowned saxophonist.

Keywords: Allostatic load; Caregiver burden; Carer hypervigilance; Zarit burden interview.