Alzheimer's disease currently affects an estimated 5.8 million older adults in the United States (Alzheimer's Association, 2019). Furthermore, there are many other disease processes that cause dementia, increasing the number of adults and family members effected.
Approximately 80% of individuals with dementia are cared for by family members (Alzheimer's Association, 2019). Caring for a family member with dementia takes a physical, mental, and emotional toll on caregivers (Alzheimer's Association, 2019), often leading to fatigue. Fatigue is defined as a sense of exhaustion, lack of energy, or tiredness distinct from sleepiness, sadness, or weakness, resulting from mental or physical exertion (Finsterer & Mahjoub, 2014). As the caregiving role may last many years, fatigue can become chronic and debilitating. Without periods of rest and recuperation, fatigue only worsens and may have a negative impact on caregivers' health, subsequently impacting their ability to perform ordinary tasks and provide quality care.
Currently, little research has been done to understand fatigue and its related factors among family caregivers of individuals with dementia. In a qualitative study by Ali and Bokharey (2015), caregivers expressed anxiety about providing adequate care due to the fatigue they were experiencing. Chiu et al. (2014) found that caregiver fatigue and depression were associated with poor sleep quality. Although these two studies focused on the overall caregiving experience and caregiver sleep, they did not provide evidence regarding what might be associated with fatigue. Previous research shows that depressive symptoms of caregivers increase as care recipient functionality worsens (Ferrara et al., 2008), and caregivers with poorer sleep quality experience more depression (Peng & Chang, 2013). Given that relationships have been established between fatigue and sleep quality, sleep quality and depression, depression and care recipient functionality, relationships among fatigue, care recipient functionality, and depression may exist. The purpose of the current study was to examine factors associated with fatigue among caregivers of individuals with dementia.
Method
Participants and Setting
Participants were recruited from the Alzheimer's Association, Western New York Chapter. Caregivers were included if they could speak and read English, were age ≥50, identified themselves as the primary caregiver of an individual with dementia, were living with the care recipient, were not receiving payment for care provided, and were functioning independently.
Procedure
Subjective and objective data were collected for the current cross-sectional study. Upon recruitment, potential participants were screened for eligibility before informed consent was obtained. After informed consent was obtained, participants completed questionnaires and were given an actigraph, a wristwatch-sized device that continually records activity, to wear for 7 days. The university Institutional Review Board approved the study.
Measures
Fatigue. The Visual Analog Scale for Fatigue (VAS-F) is an 18-item measure with 13 items related to fatigue and five items related to energy levels (Lee et al., 1991). Each item has a 100 mm visual analog line with descriptors at both ends, and respondents mark the line to indicate how they currently feel (e.g., from “not at all exhausted” to “totally exhausted,” from “not at all worn out” to “extremely worn out”). Cronbach's alpha of the VAS-F was 0.96 (Lee et al., 1991) and was 0.83 in the current study.
Sleep. Actigraphy is a reliable objective sleep measure in healthy adult populations (Smith et al., 2018). An actigraph contains an internal ambient light sensor with a maximum 150,000 lux and an omnidirectional accelerometer with a sensitivity of ≥0.01 g-force (Mitter, 2001). For the purpose of the current study, 30-second epoch recording was used, allowing 7.5 continuous 24-hour long periods of data to be stored. Data collected from the actigraph were analyzed using Actiware-Sleep Version 5.0 (Mitter, 2001). Participants were instructed to wear an actigraph for 7 consecutive days and nights and keep a sleep diary as recommended by the American Association of Sleep Medicine (Littner et al., 2003). The sleep diary was completed each day of actigraphy data collection and provided subjective estimates of various sleep-wake times that indicated time in bed, nap times, and time when the actigraph was removed (Lichstein et al., 2003). The sleep diary information was used during data processing to improve the accuracy of actigraph data.
The Pittsburgh Sleep Quality Index (PSQI) was used to assess subjective sleep quality. The PSQI comprises 19 self-rated items, which are broken down into seven components with scores on a 0 to 3 scale. The seven scores are summed to yield a PSQI score ranging from 0 to 21, with higher scores indicating poorer sleep quality (Buysse et al., 1989). The PSQI has a high degree of internal consistency, with a reliability coefficient (Cronbach's alpha) of 0.83 (Buysse et al., 1989). In the current study, the internal consistency of the PSQI was 0.83.
Depression. Depression was measured using the Center for Epidemiologic Studies Depression Scale (CES-D). The CES-D assesses the frequency of symptoms over a 7-day period. Questions in this assessment are scored on a 1 to 4 scale, with a higher score indicating more depression. This scale had a high alpha reliability and discriminant validity in a sample of caregivers (Rose-Rego et al., 1998). In the current study, the internal consistency of the CES-D was 0.88.
Care Recipient Physical Function. The Physical Self-Maintenance Scale (PSMS) and Instrumental Activities of Daily Living Scale (IADLS) were used to assess functional status of individuals with dementia. These scales were completed by caregivers. The PSMS evaluates an individual's functional status in toileting, feeding, dressing, grooming, ambulation, and bathing. One point can be awarded in each category, giving the scale a range of 0 to 6, with higher scores indicating more functionality (Lawton & Brody, 1969). The IADLS is used to determine functionality in the areas of telephone use, shopping, food preparation, housekeeping, laundry, mode of transportation, medication management, and financial abilities, giving the scale a range of 0 to 8, with higher scores indicating more functionality (Lawton & Brody, 1969).
Data Analysis
Descriptive statistics were used to describe demographic characteristics. Pearson's correlation was used to examine the associations among fatigue, depression, sleep, and care recipient functionality. Variables in Pearson's correlation found to be significantly associated with caregivers' fatigue were entered into the regression model. Statistical analysis was conducted using SPSS version 24.
Results
Forty-four participants were recruited, and one participant withdrew. Demographic characteristics are summarized in Table 1. Participants reported high levels of fatigue and poor sleep quality (Table 1). Significant associations were found between fatigue and depression (r = 0.435, p < 0.01), sleep onset latency (r = 0.399, p < 0.05), sleep quality (r = 0.576, p < 0.001), and care recipient functionality (per the PSMS) (r = −0.474, p < 0.05), as well as between energy and depression (r = 0.311, p < 0.05), sleep quality (r = 0.492, p < 0.01), and care recipient functionality (r = −0.368, p < 0.05) (Table 2). Caregivers who reported a higher level of depression were more likely to experience a higher level of fatigue and lower level of energy. Similarly, caregivers with poorer sleep quality experienced more fatigue and less energy. As care recipient functionality decreased, caregiver fatigue increased, and energy decreased. Results of the regression analysis indicated that caregiver sleep quality was a significant predictor of fatigue and energy (Table 3).
Discussion
Current study findings showed high levels of fatigue among caregivers of individuals with dementia. Caregivers with more depressive symptoms, poorer sleep quality, and those providing care for less functional care recipients experienced greater fatigue. This finding offers some validation to the idea that fatigue is part of the caregiving experience. Furthermore, significant correlations between sleep quality and fatigue validate a 2014 study that linked fatigue to increased sleep disturbances in caregivers (Chiu et al., 2014). Caregivers experience significant physical and emotional demands that increase over years of caregiving and as the care recipient continues to physically and mentally decline. These demands may prevent caregivers from getting sufficient sleep, which contributes to higher levels of fatigue and lower levels of energy. Similarly, caregivers who reported more depression may experience lower levels of energy, which results in higher levels of fatigue.
The current study findings also suggest that lower care recipient functionality was associated with a higher level of fatigue. Although there is no prior study investigating such an association among family caregivers of individuals with dementia, physical and mental exertion can result in fatigue (Finsterer & Mahjoub, 2014). As care recipient functionality deteriorates, caregiving demand increases and may require more physical and mental effort from caregivers, resulting in fatigue. However, in the regression analysis, depression and care recipient functionality were not significant predictors of fatigue. This result may be due to the small sample.
Further research is warranted to identify strategies to support caregivers of individuals with dementia. It is important to examine how unresolved fatigue in caregivers affects not only their own physical health, but also the quality of care they provide.
Limitations
In the current study, the small sample of 43 participants with limited diversity reduces the generalizability of the results. Larger studies with a more diverse group of participants should be completed to further validate these results. This study was also limited by the use of self-report measures; however, the inclusion of actigraphy data improved the reliability of collected data.
Implications and Conclusion
The current study shows that caregiver fatigue is significantly influenced by sleep quality. Nurses should routinely assess caregivers' level of fatigue and provide advice on monitoring fatigue and sleep quality on a regular basis, managing fatigue through obtaining sufficient sleep and stress reduction, and seeking appropriate health care when fatigue worsens.
Few studies have explored fatigue in caregivers of individuals with dementia. Further study in this area can help provide a better understanding of fatigue experienced by caregivers, giving insight into ways to improve the caregiving experience. Fatigue needs to be recognized as an important symptom among caregivers of individuals with dementia.
References
- Ali, S. & Bokharey, I. Z. (2015). Maladaptive cognitions and physical health of the caregivers of dementia: An interpretative phenomenological analysis. International Journal of Qualitative Studies on Health and Well-being, 10, 28980 doi:10.3402/qhw.v10.28980 [CrossRef] PMID:26384522
- Alzheimer's Association. (2019). 2019 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 3(15), 321–387 doi:10.1016/j.jalz.2019.01.010 [CrossRef]
- Buysse, D. J., Reynolds, C. F., Monk, T. H. 3rd. , Berman, S. R. & Kupfer, D. J. (1989). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28(2), 193–213 doi:10.1016/0165-1781(89)90047-4 [CrossRef] PMID:2748771
- Chiu, Y.-C., Lee, Y.-N., Wang, P.-C., Chang, T.-H., Li, C.-L., Hsu, W.-C. & Lee, S.-H. (2014). Family caregivers' sleep disturbance and its associations with multilevel stressors when caring for patients with dementia. Aging & Mental Health, 18(1), 92–101 doi:10.1080/13607863.2013.837141 [CrossRef] PMID:24053456
- Ferrara, M., Langiano, E., Di Brango, T., De Vito, E., Di Cioccio, L. & Bauco, C. (2008). Prevalence of stress, anxiety and depression in with Alzheimer caregivers. Health and Quality of Life Outcomes, 6, 93 doi:10.1186/1477-7525-6-93 [CrossRef] PMID:18990207
- Finsterer, J. & Mahjoub, S. Z. (2014). Fatigue in healthy and diseased individuals. The American Journal of Hospice & Palliative Care, 31(5), 562–575 doi:10.1177/1049909113494748 [CrossRef] PMID:23892338
- Lawton, M. P. & Brody, E. M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179–186 doi:10.1093/geront/9.3_Part_1.179 [CrossRef] PMID:5349366
- Lee, K. A., Hicks, G. & Nino-Murcia, G. (1991). Validity and reliability of a scale to assess fatigue. Psychiatry Research, 36(3), 291–298 doi:10.1016/0165-1781(91)90027-M [CrossRef] PMID:2062970
- Lichstein, K. L., Durrence, H. H., Taylor, D. J., Bush, A. J. & Riedel, B. W. (2003). Quantitative criteria for insomnia. Behaviour Research and Therapy, 41(4), 427–445 doi:10.1016/S0005-7967(02)00023-2 [CrossRef]
- Littner, M., Kushida, C. A., Anderson, W. M., Bailey, D., Berry, R. B., Davila, D. G., Hirshkowitz, M., Kapen, S., Kramer, M., Loube, D., Wise, M. & Johnson, S. F.the Standards of Practice Committee of the American Academy of Sleep Medicine. (2003). Practice parameters for the role of actigraphy in the study of sleep and circadian rhythms: An update for 2002. Sleep, 26(3), 337–341 doi:10.1093/sleep/26.3.337 [CrossRef] PMID:12749556
- Mitter, M. (2001).Actiwatch 16/Actiwatch 64/Actiwatch-L/Actiwatch-Score instruction manual. Mini Mitter Co., Inc.
- Peng, H.-L. & Chang, Y.-P. (2013). Sleep disturbance in family caregivers of individuals with dementia: A review of the literature. Perspectives in Psychiatric Care, 49, 135–146 doi:10.1111/ppc.12005 [CrossRef] PMID:23557457
- Rose-Rego, S. K., Strauss, M. E. & Smyth, K. A. (1998). Differences in the perceived well-being of wives and husbands caring for persons with Alzheimer's disease. The Gerontologist, 38(2), 224–230 doi:10.1093/geront/38.2.224 [CrossRef] PMID:9573667
- Smith, M. T., McCrae, C. S., Cheung, J., Martin, J. L., Harrod, C. G., Heald, J. L. & Carden, K. A. (2018). Use of actigraphy for the evaluation of sleep disorders and circadian rhythm sleep-wake disorders: An American Academy of Sleep Medicine clinical practice guideline. Journal of Clinical Sleep Medicine, 14(7), 1231–1237 doi:10.5664/jcsm.7230 [CrossRef] PMID:29991437
Participant Characteristics (N = 43)
| Variable | n (%) |
|---|
| Gender | |
| Female | 40 (93) |
| Male | 3 (7) |
| Race | |
| Caucasian | 40 (93) |
| Black | 3 (7) |
| Marital status | |
| Married | 38 (88.4) |
| Never married | 4 (9.3) |
| Divorced | 1 (2.3) |
| Employment status | |
| Retired | 34 (79) |
| Employed | 9 (21) |
| Relationship to care recipient | |
| Spouse | 30 (69.8) |
| Daughter | 12 (27.9) |
| Partner | 1 (2.3) |
| Variable | Mean (SD) (Range) |
|---|
| Age (years) | 65.40 (9.84) (50 to 88) |
| Education (years) | 14.85 (2.56) (9 to 20) |
| Caregiving years | 5.40 (2.81) (1 to 14.5) |
| Caregiving hours per day | 16.95 (6.08) (4 to 24) |
| Fatigue subscale | 69.16 (38.37) (2 to 114) |
| Energy subscale | 30.42 (10.91) (5 to 50) |
| CES-D score | 23.72 (9.56) (6 to 43) |
| PSQI global scorea | 10.25 (3.77) (2 to 17) |
| PSMS score | 1.12 (1.89) (0 to 6) |
| IADLS score | 1.60 (1.42) (0 to 5) |
| Actigraphy | |
| Sleep onset latency (minutes) | 40.08 (24.65) (3.68 to 115.63) |
| Total sleep time per night (hours) | 5.93 (1.20) (2.82 to 7.63) |
| Sleep efficiency (percentage) | 80.79 (11.85) (60.35 to 91.04) |
| Total wakefulness after sleep onset (minutes) | 30.81 (11.85) (12.68 to 67) |
| Awakening times during the night | 33.38 (11.35) (12.71 to 68.43) |
Relationships Among Caregivers' Fatigue, Sleep, Depression, and Care Recipients' Functionality (N = 43)
| Variable | Fatigue | Energy |
|---|
| Depression | 0.435** | 0.311* |
| PSMS | −0.474** | −0.368* |
| IADLS | −0.250 | −0.169 |
| PSQI score | 0.576*** | 0.492** |
| Actigraphy | | |
| Sleep onset latency | 0.399* | 0.184 |
| Total sleep time | −0.185 | −0.006 |
| Sleep efficiency | −0.305 | −0.103 |
| Wake time after sleep onset | 0.137 | 0.054 |
| Awake time during the night | −0.145 | −0.229 |
Multiple Regression Analysis for Caregiver Fatigue (N = 43)
| Variable | Fatigue | Energy |
|---|
| β | t | β | t |
|---|
| (Constant) | | −0.141 | | 2.046 |
| PSMS | −0.198 | −1.363 | −0.239 | −1.231 |
| PSQI | 0.427 | 3.006** | 0.353 | 2.324* |
| Depression | 0.103 | 0.672 | 0.102 | 0.625 |
| Sleep onset latency | 0.238 | 1.628 | — | — |
| R2 | 0.394 | 0.206 |
| F | 7.536*** | 3.728*** |