Parkinson’s Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health
Abstract
1. Introduction
2. Methods
2.1. Data Source and Sample
2.2. Measurement
2.2.1. Experience of Parkinson’s Disease Caregiving
2.2.2. Caregiver Sociodemographic and Caregiving Characteristics
2.2.3. Care Burden
2.2.4. Caregiving-Related Strain
2.2.5. Caregiver Self-Rated Health
2.3. Analysis
3. Results
3.1. Caregiver Sociodemographic, Caregiving Characteristics, and Caregiver Health
3.2. Care Burden, Caregiving-Related Strain, and Association with Caregiver Health
3.3. Detailed Assessment of Caregivers’ Emotional, Physical, and Financial-Related Caregiving Strain
4. Discussion
4.1. Recommendations
4.2. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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| Full Sample | Non-PD Caregivers | PD Caregivers | Between Group Differences | |
|---|---|---|---|---|
| n = 3116 | n = 3044 | n = 72 | ||
| %/M (SD) | %/M (SD) | %/M (SD) | ||
| Gender identity | ||||
| Male | 41% | 41% | 29% | * | 
| Female | 59% | 59% | 71% | |
| Age | 52.5 (18.5) | 52.3 (18.5) | 60.5 (17.0) | *** | 
| Race/ethnicity | ||||
| Non-Hispanic White | 65% | 65% | 67% | |
| Non-Hispanic Black | 13% | 13% | 11% | |
| Asian/Pacific Islander, non-Hispanic | 5% | 5% | 5% | |
| Other | 3% | 3% | 2% | |
| Hispanic | 15% | 15% | 15% | |
| Marital status | * | |||
| Married | 58% | 58% | 78% | |
| Living with partner | 7% | 7% | 6% | |
| Widowed | 6% | 6% | 2% | |
| Separated | 2% | 2% | 0% | |
| Divorced | 8% | 8% | 7% | |
| Single, never married | 18% | 19% | 7% | |
| Rural | 14% | 14% | 8% | |
| Educational attainment | ||||
| Less than high school | 7% | 7% | 13% | |
| High school grad/GED | 25% | 26% | 22% | |
| Some college | 23% | 23% | 16% | |
| Technical school, Associate’s degree | 9% | 10% | 7% | |
| Bachelor’s degree | 20% | 21% | 18% | |
| Graduate or Professional degree | 15% | 15% | 25% | |
| Household income | ||||
| Under USD 15 k | 9% | 9% | 6% | |
| USD 15 to USD 29 k | 15% | 14% | 24% | |
| USD 30 to USD 49 k | 18% | 18% | 16% | |
| USD 50 to USD 74 k | 18% | 18% | 11% | |
| USD 75 to USD 99 k | 13% | 13% | 21% | |
| USD 100 k+ | 27% | 27% | 22% | |
| Currently employed | 50% | 50% | 44% | |
| Currently caregiving | 61% | 60% | 74% | * | 
| Time providing care | ||||
| Less than 6 months | 26% | 27% | 13% | |
| 6 months to 1 year | 19% | 19% | 23% | |
| 1 to 4 years | 27% | 27% | 29% | |
| 5 to 9 years | 14% | 14% | 18% | |
| 10+ years | 14% | 14% | 17% | |
| Lives with care recipient | 41% | 41% | 55% | * | 
| Full Sample | Non-PD Caregivers | PD Caregivers | Between Group Differences | |
|---|---|---|---|---|
| n = 3116 | n = 3044 | n = 72 | ||
| %/M (SD) | %/M (SD) | %/M (SD) | ||
| Caregiver burden | *** | |||
| Lowest—1 | 26% | 27% | 12% | |
| 2 | 15% | 16% | 3% | |
| 3 | 17% | 16% | 30% | |
| 4 | 27% | 26% | 30% | |
| Highest—5 | 15% | 15% | 25% | |
| Caregiving-related strain (range: 3–15) | 7.6 (3.1) | 7.6 (3.1) | 8.9 (2.9) | *** | 
| Financial strain (range: 1–5) | 2.2 (1.3) | 2.2 (1.3) | 2.5 (1.3) | |
| Emotional stress (range: 1–5) | 3.0 (1.3) | 3.0 (1.3) | 3.4 (1.1) | ** | 
| Physical strain (range: 1–5) | 2.4 (1.2) | 2.4 (1.2) | 3.0 (1.2) | *** | 
| Poor/Fair caregiver health | 18% | 18% | 22% | 
| Total | Direct | Indirect | |
|---|---|---|---|
| PD-->Burden-->Strain-->Poor/Fair Health | 0.023 | −0.004 | 0.027 ** | 
| PD--> Burden-->Strain | 1.254 *** | 0.749 * | 0.505 *** | 
| Burden-->Strain-->Poor/Fair Health | 0.018 ** | 0.002 | 0.015 *** | 
| Total | Direct | Indirect | |
|---|---|---|---|
| PD-->Burden-->Financial Strain-->Poor/Fair Health | 0.021 | 0.004 | 0.017 * | 
| PD-->Burden-->Financial Strain | 0.291 | 0.149 | 0.142 *** | 
| Burden-->Financial Strain-->Poor/Fair Health | 0.018 ** | 0.010 | 0.008 *** | 
| PD-->Burden-->Emotional Stress-->Poor/Fair Health | 0.023 | 0.002 | 0.021 ** | 
| PD-->Burden-->Emotional Stress | 0.399 ** | 0.240 | 0.159 *** | 
| Burden-->Emotional Stress-->Poor/Fair Health | 0.017 ** | 0.008 | 0.009 *** | 
| PD-->Burden-->Physical Strain-->Poor/Fair Health | 0.023 | −0.005 | 0.028 ** | 
| PD-->Burden-->Physical Strain | 0.562 *** | 0.355 ** | 0.207 *** | 
| Burden-->Physical Strain-->Poor/Fair Health | 0.017 ** | 0.003 | 0.014 *** | 
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Olson, J.S.; Persad-Clem, R.; Kueppers, G.C.; Cothran, F.A.; Longacre, M.L. Parkinson’s Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health. Healthcare 2025, 13, 1520. https://doi.org/10.3390/healthcare13131520
Olson JS, Persad-Clem R, Kueppers GC, Cothran FA, Longacre ML. Parkinson’s Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health. Healthcare. 2025; 13(13):1520. https://doi.org/10.3390/healthcare13131520
Chicago/Turabian StyleOlson, Julie S., Reema Persad-Clem, George C. Kueppers, Fawn A. Cothran, and Margaret L. Longacre. 2025. "Parkinson’s Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health" Healthcare 13, no. 13: 1520. https://doi.org/10.3390/healthcare13131520
APA StyleOlson, J. S., Persad-Clem, R., Kueppers, G. C., Cothran, F. A., & Longacre, M. L. (2025). Parkinson’s Disease Caregiving, Level of Care Burden, Caregiving-Related Strain, and Caregiver Health. Healthcare, 13(13), 1520. https://doi.org/10.3390/healthcare13131520
 
         
                                                

 
       