Abstract
Introduction
Caregiver burden significantly impacts patient and caregiver outcomes and is an important treatment consideration in dementia. Previous research has demonstrated that like behavioral variant frontotemporal dementia, prion disease has higher levels of caregiver burden than other forms of dementia; however, limited prospective research has investigated this specifically. Here, we aimed to describe caregiver well-being and caregiver burden in prion disease and determine whether demographic features, support group attendance, or features of the disease process predicted higher caregiver burden.
Methods
Thirty patients with prion disease and their caregivers were assessed longitudinally through the Teleneurology Assessment Program for Creutzfeldt-Jakob Disease. Caregivers were administered the Neuropsychiatric Inventory Questionnaire (NPI-Q), MRC Prion Disease Rating Scale, Outcome Evaluation of the National Family Caregiver Support Program, and other assessment instruments. We performed descriptive and inferential statistics to examine the progression of caregiver burden and to identify features that impacted caregiver burden severity.
Results
Thirty caregiver-patient dyads were followed longitudinally. Prion disease duration averaged 7.88 months. Mean initial NPI-Q distress score was 15. Qualitatively, distress increased from the time of study enrollment until peaking on average half-way through study participation and then declined. Higher burden (4-item Zarit Burden Interview) was associated with younger age at disease onset. Burden was not predicted by disease type, duration, caregiver demographics, relationship to the patient, MRC Prion Rating Scale scores, NPI-Q, or support group attendance.
Conclusion
These findings confirm significant caregiver distress in prion disease and help better describe the course of caregiver burden throughout the disease. Statistical analyses were limited by small sample size and phenotypic heterogeneity, and future research would benefit from larger sample sizes.
Keywords: Prion disease, Creutzfeldt-Jakob, Caregiver burden, Caregivers
Introduction
Caregiver burden is an important consideration in the management of dementia as it has been associated with significant patient and caregiver outcomes including institutionalization and declining caregiver well-being [1, 2]. Prior research indicates that caregiver burden varies across dementia subtypes, with behavioral variant frontotemporal dementia and prion disease exhibiting higher levels of burden compared to other forms of dementia; however, limited research has investigated the factors contributing to increased caregiver burden in these cases [3].
Prion diseases are a group of rapidly progressive neurodegenerative disorders caused by misfolded prion proteins, with sporadic Creutzfeldt-Jakob disease (sCJD) being the most common form [4, 5]. Phenotypic presentation can vary depending on disease subtype, but most often, prion disease is characterized by a progressive decline in cognitive and motor function with associated symptoms including ataxia, myoclonus, visual changes, psychiatric changes, agitation, and sleep disturbances [6, 7].
To date, only a limited number of studies have specifically examined caregiver burden in prion disease. Uflacker et al. [3] conducted a cross-sectional study assessing caregiver burden across various atypical dementias and found that caregivers of individuals with sCJD (as well as behavioral variant frontotemporal dementia) reported significantly higher burden levels than other forms of dementia which were linked to the severity of neuropsychiatric symptoms rather than functional decline alone. Another survey study explored the symptoms contributing to caregiver burden and identified six key domains reported by caregivers: mobility and coordination, continence and personal care, communication, mood and behavior, eating and swallowing, and cognition and memory [8]. Two additional qualitative studies have highlighted key sources of distress for caregivers, including clinician knowledge gaps, diagnostic uncertainty, rapid disease progression, and rapidly increasing caregiving demands [9, 10].
Prospective research assessing caregiver burden in prion disease remains limited, particularly in understanding how demographic factors, support group attendance, and aspects of the disease process itself shape caregiver experiences over time. This study explores caregiver burden in prion disease. We aimed to build upon existing literature by longitudinally characterizing caregiver well-being and identifying predictors of caregiver burden within a cohort of caregivers participating in the Teleneurology Assessment Program for Creutzfeldt-Jakob Disease (TAPCJD). By improving our understanding of the challenges faced by caregivers, we hope to inform targeted interventions to better support those affected by prion disease.
Methods
Thirty patients with prion disease and their caregivers were assessed longitudinally through the TAPCJD [11]. Recruitment included referrals from the CJD foundation or from clinical providers. Participants met enrollment criteria if they were symptomatic with a known mutation in the prion protein gene (PRNP) or if they met criteria for probable sCJD as defined by the 2017 International CJD Surveillance Network Diagnostic Criteria for Sporadic CJD [12]. Patient and caregiver dyads had a baseline telemedicine evaluation followed by 2 monthly follow-up visits, and then a visit every other month for two additional visits, followed by visits every 3 months until the patient withdrew from the study or passed away. At the baseline visit, a standardized history was collected, including the participant’s disease course including time of first symptom onset, past medical history, past surgical history, risk factors for acquired prion disease, family history, social history, patient demographics, and caregiver demographics. At each visit, patients and caregivers were interviewed together and separately. Patients were administered the Telephone Interview for Cognitive Status to assess cognitive function [13]. Caregivers were administered the Neuropsychiatric Inventory Questionnaire (NPI-Q) which assesses the presence and severity of neuropsychiatric symptoms as well as associated distress (domains 0–12, severity 0–36, distress 0–60, with higher scores representing more symptoms, severity, and distress); MRC Prion Disease Rating Scale (MRC-PDRS) which assesses functional impairment and disease progression in prion disease (score = 0–20, with 0 points being maximal impairment); and Outcome Evaluation of the National Family Caregiver Support Program which included the Zarit Caregiver Burden Assessment 4-item screening instrument (ZBI-4) to assess caregiver burden (score = 0–16 with 16 being maximal impairment), PROMIS mental health score (PROMIS-M; score 4–20 with 20 representing better mental health), PROMIS physical health score (PROMIS-P; score 4–20 with 20 representing better physical health), as well as measures of caregiver satisfaction and caregiver confidence [14–17]. When available, final diagnostic information was collected from autopsy reports performed through the National Prion Disease Pathology Surveillance Center.
We performed descriptive and inferential statistics to examine the progression of caregiver burden and to identify features that impacted severity of caregiver burden. Statistical analyses were performed using SPSS software (version 29). For continuous variables, one‐way ANOVAs were used when comparing three or more groups, and Mann-Whitney U tests were used in place of t tests for two‐group comparisons due to the small sample size. Correlations among continuous variables were assessed using Kendall’s tau, which provides more robust estimates in small samples. A p value of < 0.05 was considered statistically significant.
Results
Of the 30 caregivers enrolled, 19 (63.3%) were female. Most caregivers (66.7%) were the patient’s partner, while 6.7% were parents and 26.7% were adult children. Among the patients, 63.3% were female, and nearly all identified as White (96.7%). Seven participants (23.3%) did not complete the study in its entirety. Of those who did not complete the study, 4 were lost to follow-up, 1 withdrew due to severity of neuropsychiatric symptoms, and 2 did not specify the reason for withdrawal. Of the 7 participants who did not complete the study, we have confirmation that 4 passed away, and of these, 3 underwent autopsy. All of those who completed the study and passed away donated their brain and had final diagnostic information from autopsy. The most common disease etiology was sporadic (73.7%), with 26.3% having a genetic form of prion disease. Patients had a mean age of 65.1 years at disease onset (range 41–91) and a mean disease duration of 7.88 months (median 5.8, SD 9.25). Table 1 depicts full demographic information. Final diagnosis subtype from autopsy is available in the online supplementary data (for all online suppl. material, see https://doi.org/10.1159/000549584).
Table 1.
Sample demographics
| n (%) | |
|---|---|
| Caregiver demographics | |
| Female | 19 (63.3) |
| Caregiver relationship | |
| Partner | 20 (66.7) |
| Parent | 2 (6.7) |
| Child | 8 (26.7) |
| Participant demographics | |
| Female | 19 (63.3) |
| Ethnicity | |
| White | 29 (96.7) |
| Black | 1 (3.3) |
| Etiology | |
| Sporadic | 14 (73.7) |
| Genetic | 5 (26.3) |
| Age at symptom onset (mean, STD, range), years | 65.10, +/−11.2 (41–84) |
| Duration (mean, median, STD, range), months | 7.88, 5.8, 9.248 (1–45) |
Analyses revealed a significant negative association between the patient’s age at disease onset and caregiver burden, as measured by the ZBI-4 (Kendall’s tau-b = −0.264, p = 0.049), indicating that an earlier onset of the disease was linked to greater caregiver burden (shown in Fig. 1). Additional associations between caregiver burden (as measured by ZBI-4, PROMIS-M, and PROMIS-P) and other study variables (disease type, disease duration, caregiver and patient demographics, total and individual MRC-PDRS scores, total and individual NPI-Q scores, and attendance of a CJD Foundation support group) were examined, but did not yield significant results. See Table 2 for a summary of complete analyses.
Fig. 1.
Relationship between ZBI 4-Item Screen Score and patient age at disease onset (n = 30). Correlation coefficient (Kendall’s tau) = −0.264, 2-tailed significance = 0.049.
Table 2.
Analysis summary of study variables with caregiver burden
| Variable (analysis) | ZBI-4 | PROMIS-M | PROMIS-P |
|---|---|---|---|
| Patient age at disease onset (Kendall’s tau correlation) | τ_b = 0.264, p = 0.049* | τ_b = 0.123, p = 0.359 | τ_b = 0.171, p = 0.223 |
| Genetic vs. sporadic (Mann-Whitney U) | Z = −0.361, p = 0.753 | Z = −0.196, p = 0.850 | Z = −0.033, p = 1.000 |
| Heterozygotes vs. homozygotes at codon 129 (Mann-Whitney U) | Z = −0.559, p = 0.605 | Z = −0.893, p = 0.397 | Z = −0.823, p = 0.428 |
| Disease duration (Kendall’s tau correlation) | τ_b = −0.267, p = 0.052 | τ_b = 0.045, p = 0.745 | τ_b = 0.139, p = 0.334 |
| Patient gender (Mann-Whitney U) | Z = −0.148, p = 0.902 | Z = −0.147, p = 0.902 | Z = −0.409, p = 0.711 |
| Caregiver gender (Mann-Whitney U) | Z = −0.499, p = 0.641 | Z = −0.627, p = 0.553 | Z = −0.554, p = 0.611 |
| Partner vs. non-partner relationship (Mann-Whitney U) | Z = −0.443, p = 0.681 | Z = −0.597, p = 0.559 | Z = −0.045, p = 0.983 |
| MDC-PDRS total (Kendall’s tau correlation) | τ_b = −0.221, p = 0.110 | τ_b = −0.040, p = 0.772 | τ_b = −0.022, p = 0.882 |
| MDC-PDRS ADL (Kendall’s tau correlation) | τ_b = −0.221, p = 0.127 | τ_b = −0.036, p = 0.804 | τ_b = −0.092, p = 0.545 |
| MDC-PDRS motor (Kendall’s tau correlation) | τ_b = −0.164, p = 0.263 | τ_b = −0.017, p = 0.910 | τ_b = −0.030, p = 0.846 |
| MDC-PDRS cognition (Kendall’s tau correlation) | τ_b = −0.243, p = 0.096 | τ_b = −0.006, p = 0.970 | τ_b = −0.027, p = 0.860 |
| TICS overall score (Kendall’s tau correlation) | τ_b = −0.173, p = 0.230 | τ_b = −0.102, p = 0.478 | τ_b = −0.041, p = 0.787 |
| NPI-Q total domains (Kendall’s tau correlation) | τ_b = 0.146, p = 0.292 | τ_b = −0.085, p = 0.538 | τ_b = −0.027, p = 0.853 |
| NPI-Q total severity (Kendall’s tau correlation) | τ_b = 0.151, p = 0.263 | τ_b = −0.031, p = 0.815 | τ_b = −0.003, p = 0.985 |
| Support group attendance vs. nonattendance (Mann-Whitney U) | Z = −1.152, p = 0.267 | Z = −0.426, p = 0.692 | Z = −1.133, p = 0.285 |
*p < 0.05.
Given the limited sample size, results were also explored qualitatively. Although not formally examined due to limited power, NPI-Q distress, domains, and severity appeared to increase from visit one until peaking at the third and fourth visits, on average 50% through disease duration, and then declining, as shown in Figure 2. While CJD Foundation support group attendance was not found to be significantly associated with level of caregiver burden as measured by ZBI-4, PROMIS-M, and PROMIS-P, we also qualitatively looked at cases where a caregiver began attending support groups during the study. There were two such cases: in one case, ZBI-4 decreased after attending the support group, and in the other case, it increased after attending the support group.
Fig. 2.
Colored lines represent mean scores in NPI-Q severity, NPI-Q total number of domains, NPI-Q distress, and ZBI-4 screening score over time from the baseline visit, in months.
Discussion
Results from this study indicate that younger age of disease onset was significantly associated with greater caregiver burden for caregivers of patients with prion disease. This finding aligns with prior research demonstrating that caregivers of patients with young-onset dementia report higher levels of burden than those caring for individuals with late-onset dementia [18]. Several factors may contribute to this increased burden in young-onset cases, including financial stressors due to loss of income, a higher likelihood of having dependent children, greater behavioral disturbances, and comparatively fewer physical comorbidities and frailty [19, 20].
This study builds upon existing literature by demonstrating that caregiver burden remains high across the disease trajectory in prion disease. The average ZBI-4 score at the first visit was 12.3, well above the clinical cutoff of 8, and remained elevated, with a nadir of 11.4 throughout trial enrollment. Additionally, NPI-Q total distress scores at the initial visit averaged 15.03, surpassing previously published averages for other neurodegenerative conditions such as FTD (9.1), Alzheimer’s disease (4.12), and cerebrovascular disease (3.5) [3]. Likewise, the NPI-Q average total severity score at baseline was 12.63, higher than those reported for FTD (8.2), AD (3.7), and cerebrovascular disease (3.1) [21].
Visual inspection of the data suggests that NPI-Q severity and distress scores tended to increase during the early course of disease and appeared to peak around the midpoint of disease duration, after which they declined. These qualitative trends should be interpreted with caution given the small and heterogeneous cohort, yet we hypothesize that they may nonetheless reflect the clinical trajectory of prion disease: as patients transition from a phase characterized by prominent neuropsychiatric symptoms to later stages marked by neurocognitive debility and akinetic mutism, observable behavioral symptoms and caregiver-reported distress diminish. Prior studies suggest that caregiver burden in prion disease is more closely linked to neuropsychiatric disturbances than to motor or functional impairments alone [3]. Comparable nonlinear trajectories have been documented in other dementias, with behavioral symptoms and caregiver distress peaking mid-course and declining as patients become less behaviorally expressive [22]. Furthermore, reductions in caregiver burden in other dementias have been reported following institutionalization or transition to long-term care settings, which may similarly apply here [23]. Of note, we also observed a small initial dip in NPI-Q domains, NPI-Q severity, NPI-Q distress, and ZBI-4 at 1 month. Prior survey studies have suggested that caregiver burden is associated with diagnostic uncertainty and clinician knowledge gaps [9, 10]. Knowing this, we speculate that receiving a definitive diagnosis and being linked with providers with significant experience in managing prion disease through this study may have helped mitigate caregiver burden and distress associated with neuropsychiatric symptoms.
We also evaluated a range of additional factors that we hypothesized might contribute to caregiver burden, including prion disease subtype, disease duration, caregiver and patient demographics, total and domain-specific MRC-PDRS and NPI-Q scores, and participation in CJD Foundation support groups. However, none of these factors achieved statistical significance in our analysis. While our overall sample size of 30 patient-caregiver dyads was relatively robust given the rarity of prion disease, subgroup comparisons were limited by small numbers. Moreover, the considerable phenotypic heterogeneity across prion disease subtypes, particularly between sporadic CJD and genetic variants such as Gerstmann-Sträussler-Scheinker syndrome, may have diluted associations that might otherwise have reached significance, which is a limitation of this study. Another limitation is that our sample is not representative of frequencies of disease subtype in the general population. Our sample has an overrepresentation of longer disease subtypes, with 10.5% of our cases due to P102L mutation, which is only 1–2% of cases in the general population. Our sample also did not have any cases of MM1 CJD, which is the most common subtype in the general population, representing approximately 60% of cases. Finally, a key limitation of this study is that the sample was not racially representative, with 96.7% of participants identifying as White. This lack of diversity may limit the generalizability of findings to the broader US population.
Future studies should aim to include larger cohorts to account for phenotypic variability. Additionally, longitudinal qualitative data from caregivers could enrich our understanding of evolving psychosocial needs across the disease course. Another question that remains unanswered is whether length of time until diagnosis is associated with caregiver burden, which previous survey studies have suggested. Additionally, our study assessed caregiver burden with the ZBI-4, and while this 4-item version has been shown to correlate with the 22-item version of the ZBI, we are unable to find direct comparison data for this score in other forms of dementia. Future work should include the full 22-item version for more direct comparison. Finally, intervention studies targeting caregiver education, psychosocial support, and access to services such as respite care or counseling could be instrumental in mitigating caregiver distress in prion diseases.
Statement of Ethics
This study protocol was reviewed and approved by the University Hospitals Cleveland Medical Center Institutional Review Board, Approval No. 20211632. The study is performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments. This study received written informed consent from the study participant or their legal authorized representative if they did not have capacity to consent as well as from the study partner (e.g., caregiver).
Conflict of Interest Statement
B.S.A. receives research funding from CDC, NIH, and CJD Foundation, Ionis, and Alector; has provided consultation to Ionis, Sangamo, BD Medical, Lundbeck, Nobelpharma, and Gate Biosciences; and receives royalties from Wolters Kluwer. A.K., J.T.M., P.O., and K.G. report no conflicts of interest.
Funding Sources
This study was supported by CJD Foundation and Stivison Fund for CJD Research.
Author Contributions
A.K. participated in clinical visits, statistical analysis, literature review, and manuscript writing. J.T.M. participated in statistical analysis, literature review, and manuscript writing. K.G. contributed to study design, study approval, coordination of clinical visits, data management, and manuscript writing. P.O. contributed to study design and manuscript writing. B.S.A. was responsible for study design, study approval, clinical visits, statistical analysis, and manuscript preparation.
Funding Statement
This study was supported by CJD Foundation and Stivison Fund for CJD Research.
Data Availability Statement
The data that support the findings of this study are not publicly available due to privacy reasons but are available from the authors upon request by emailing bsa35@case.edu.
Supplementary Material.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are not publicly available due to privacy reasons but are available from the authors upon request by emailing bsa35@case.edu.