DepartmentNGNA SectionThe influence of sleep disruption and pain perception on indicators of quality of life in individuals living with dementia at home
Introduction
According to the 2013 World Alzheimer Report, there are currently 36 million people with dementia worldwide. This number is projected to exceed 60 million by 2032, and 115 million by 2050.1 Among the consequences is a projected rapid rise in the costs of care for the ongoing support and treatment that persons with dementia require.2 Because the disease is not curable. The primary objective of care is the maintenance and promotion of quality of life (QoL).3 Therefore, Qol has become a primary target for and outcome of intervention studies as well as an indicator for the quality of care in this population.4, 5 It is important for nurses who care for older persons with dementia to understand factors that impact QoL and be positioned to impact this outcome.
Many studies have shown the QoL of dementia patients to be lower than that in the general older adult population.6 Two prevalent and potentially modifiable factors influencing QoL ratings in older adults are undertreated pain and sleep disturbances.7, 8 The perception of pain has been identified as an important contributory factor to QoL in several recent studies of community dwelling persons with dementia.9, 10 Similarly, the presence of sleep disturbances may impact QoL ratings for patients with dementia.11 Despite the prevalence of undertreated pain and sleep disruption, there are no studies that examine the unique influence of both pain and sleep quality and on different indicators of QoL in community residing persons with dementia. Moreover, it is difficult to separate the effects of disturbed sleep from those of comorbid conditions and pain. Thus, the purpose of this study was twofold: to determine the prevalence of common sleep disturbances and pain and evaluate the unique contributions of both sleep disturbance and pain on overall QoL and three subscales in community dwelling persons with dementia controlling for factors such as number of health conditions and cognitive status.
QoL is a complex construct that encompasses different aspects of everyday life. The DEMQoL is a validated and widely used measure specific to dementia that captures three important components of daily life.12 These include daily activities (daily life), self concept (feelings), and cognitive functioning (memory). Our hypothesis stated that both symptoms of pain and sleep disturbance would be significant predictors of poor overall Qol in persons with dementia as rated by caregivers, when controlling for demographic and illness severity factors. We did not have specific hypotheses as to the relationship of these predictors to the three subscales of the DEMQoL – everyday life domain, memory domain and feeling domain.
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Subjects and setting
A total of 88 dyads (persons with dementia and family caregivers) were enrolled in this study between January 2009 and October 2010.11 Participants with dementia were eligible if they lived in their own homes or with a family caregiver and spoke English. Also, participants with dementia were included if they had a Mini Mental Status Examination score of ≥10 since we sought participants with mild to moderate disease stage who had the potential to respond to questions concerning pain.
Sample characteristics
Of 113 dyads screened, 111 (98%) met initial study criteria and received the telephone battery. Of these, 101 (91%) received an initial home visit for which 91 were eligible with 10 (9%) dyads ineligible based on patient MMSE (<10). Of 91 eligible and enrolled dyads, 88 (97%) completed two home assessments and were included in the analyses.
Patients had mild to moderate cognitive impairment (Mean MMSE = 17.7 ± 4.6, range = 10–28), were primarily female (52.3%, n = 46) and white (76.1%, n = 67),
Discussion
The results presented in this study confirm those of previous studies concerning the prevalence of pain and sleep disruption and their respective influence on QoL. Our study also extends previous findings by demonstrating the unique influence of pain and sleep on three QoL domains while controlling for demographic and disease severity factors. Pain and sleep disruption were common in this sample of community dwelling persons with dementia and were associated with their caregiver's perception of
Limitations
In light of several study limitations, these results warrant caution in generalizing the findings. Limitations include the small sample size and cross-sectional design. Longitudinal studies are needed to determine whether lower quality of life persists after the treatment for pain or sleep problems. Another limitation was the method used to measure pain; neither the duration of pain nor pain intensity could be determined. Also, proxy report was used for the assessment of the person's sleep
Conclusions
This study suggests that both pain and sleep disruption of persons with dementia contribute to caregiver ratings of poor QoL in community-dwelling persons with dementia and thus indicates the need for geriatric nursing intervention. Given the prevalence of undertreated sleep disruption and pain symptoms in this population, better guidelines for intervening are needed to routinely assess and treat concomitant sleep and pain disturbances in patients with dementia. Because of the side effects and
Acknowledgments
The research reported in this paper was supported by funds from the Alzheimer's Association (grant IIRG-07-28686) and the National Institute on Aging (grant R01 AG22254). We gratefully thank the research team and study participants for their time and responses. The authors have no disclosures to report.
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