Research Insights

Mental symptoms in Parkinson’s disease are important contributors to caregiver distress

Aarsland, Larsen, Karlsen, Lim & Tandberg. (1999) Mental symptoms in Parkinson’s disease are important contributors to caregiver distress , 14, 866-874

The objective of this study was to evaluate the effects of caring for a patient with PD. They initially discuss the common symptoms of PD (physical and mental) and how those symptoms can affect not only the life of the patient but the life of the person assisting the patient with PD as well. The authors cited research on dementia, that in general has found caring for someone with dementia can cause distress in the caregiver and caregiver distress is related to patient institutionalization. The literature in Alzheimer’s disease has found that social support and education for carers delayed the time that patient’s needed to be institutionalized. As we have discussed in other review articles for DBS-STN.org, there simply is not a large body of literature that looks at caregivers for person’s with PD so the ultimate objective of this study was to add to what little information is out there. This study was conducted in Norway and identified 245 patients with PD for baseline evaluation. Four years later, a total of 94 patients (mean age=72.4, male/female ratio 41/53, mean education= 9.4, duration of disease 12.2) and their caregivers were again evaluated (7 patients were misdiagnosed, 87 had died, and the remainder either had no close relative or carers choose not to participate). The authors also looked at two controls groups, 100 patients with chronic diabetes and 98 healthy elderly patients. Caregivers were given the Relative Stress Scale (RSS, Greene et al., 1982), 15 items (score 1-5, higher score indicates more distress) that assesses distress and social upset of the carer. There were three subscales of the RSS, personal distress scale, life upset scale, and the negative feelings scale. The authors also measured emotional distress by having carers complete two quality of life measures and a standard depression inventory (BDI). General demographic information was also obtained for both carer and patient by a neurologist. Each patient was also given the Mini-mental status examination (MMSE, 30 item screening tool) and the Dementia Rating Scale (DRS, broad screening measure), as well as a series of depression and psychiatric inventories. Fifty-eight caregivers were spouses (most females, mean age 70.8), 36 carers were another relative (daughter, daughter-in-law, son, or other; mean age 46.5, age range 28-81). Results found that spouses had higher levels of caregiver stress and emotional distress as compared to other relatives. Due to the discrepancy in distress between the spouses and other carers, only the spouse group was looked at. There was no difference in level of carer distress of patients with PD as compared to chronic diabetes, but the carers of patients with PD endorsed more depressive symptoms (although their scores were still within normal limits, BDI=8.3, and did not indicate diagnosable major depressive disorder), tiredness, sadness, and less satisfaction with life as compared to the health elderly subjects. In looking at the demographic factors, the authors found that there was a correlation between patients receiving public home care and higher levels of caregiver stress. They suggested that the patients that need home care likely had more impairments than those that didn’t require home care. The authors also found that severity of patient’s motor and mental difficulties were significantly correlated with all measured areas of caregiver distress. As a result of all of the measures being correlated, the authors used a statistic to predict what measure explained this relationship best. The results suggested that mental difficulties (delusions, agitation, aberrant motor behaviors, depression, and cognitive impairment) in patients with PD contributed to both emotional distress and general carer distress, while functional impairments only predicted general carer distress. Interestingly severity of motor symptoms or disease stage did not significantly predict carer distress. The authors discussed that depression and cognitive impairment was found to significantly contribute to emotional and social strain on the spouses of patients with PD. Additionally, the authors noted that mental symptoms in PD have been found to predict patient quality of life (Karlsen et al., 1998) and are potentially treatable (Klaassen et al., 1995; Wolters et al., 1996). They noted that identifying and treating mental symptoms in patients with PD is crucial for both the well being of the patient and the carer, which likely will contribute to the length of time the carer can continue to care for the patient in their home. The authors also discussed the limitations of their study, including limited information about the carer (e.g. pre-existing psychological difficulties, level of support) and caregiver situation.

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