Abstract
Background
Caregiving in Alzheimer’s disease (AD) is often provided by informal care partners, who spend more hours per week on average than care partners of individuals with conditions other than AD. However, the burden of care in partners of individuals with AD has not been systematically compared to that of other chronic diseases.
Objective
The current study therefore aims to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review.
Methods
Data was collected from journal articles published in the last 10 years, using two unique search strings in PubMed and analysed using pre-defined patient-reported outcome measures (PROMs) including the EQ-5D-5L, GAD-7, GHQ-12, PHQ-9, WPAI and the ZBI. The data was grouped according to the included PROMs and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted to reflect the number of participants in studies reporting care partner burden in other chronic diseases.
Results
All results in this study are reported as a mean value and standard deviation (SD). The ZBI measurement was the most frequently used PROM to collect care partner burden (15 studies) and showed a moderate burden (mean 36.80, SD 18.35) on care partners of individuals with AD, higher than most of the other included diseases except for those characterized by psychiatric symptoms (mean scores 55.92 and 59.11). Other PROMs such as PHQ-9 (six studies) and GHQ-12 (four studies) showed a greater burden on care partners of individuals with other chronic diseases such as heart failure, haematopoietic cell transplantations, cancer and depression compared to AD. Likewise, GAD-7 and EQ-5D-5L measurements showed a lesser burden on care partners of individuals with AD compared to care partners of individuals with anxiety, cancer, asthma and chronic obstructive pulmonary disease. The current study suggests that care partners of individuals with AD experience a moderate burden, but with some variations depending on the PROMs used.
Conclusion
The results of this study were mixed with some PROMs indicating a greater burden for care partners of individuals with AD versus other chronic diseases, and other PROMs showing a greater burden for care partners of individuals with other chronic diseases. Psychiatric disorders imposed a greater burden on care partners compared to AD, while somatic diseases in the musculoskeletal system resulted in a significantly smaller burden on care partners compared to AD.
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The care of individuals with chronic diseases can often be a challenging and demanding task, particularly for those who act as informal care partners. |
This study examines the care partner burden of Alzheimer’s disease and compares it to that of other chronic diseases. |
The most important patient-reported outcome measure (PROM) showed a higher care partner burden for Alzheimer’s disease: 36.8 scale points compared to a range of 0.8–28.9 for other chronic diseases, the exception being psychiatric diseases with 59.11 scale points. The other PROMS studied showed mixed results. |
Introduction
The care of individuals with chronic diseases can often be a challenging and demanding task, particularly for those who act as informal care partners. Informal care partners often provide physical, emotional and logistical support to individuals with chronic diseases. The burden of care can negatively impact the well-being and quality of life (QoL) of both the care partner and the individual with the chronic disease [1]. Most research has focused on the QoL of the patients. Less is known about the impact of chronic diseases on the QoL of relatives and informal care partners [2].
Alzheimer’s disease (AD) is a chronic and progressive neurological disease characterized by the deterioration of cognitive functions causing neuropsychiatric symptoms, impairments in activities of daily living with multiple social and individual consequences [3]. AD is the most frequent cause of dementia, accounting for 60% to 70% of cases [4]. The accumulation of beta-amyloid plaques and tau tangles induces neurodegeneration which impairs cognitive function and manifests as the symptoms of AD [5]. The progression of AD follows a three-stage continuum, beginning with the preclinical disease, in which the beta-amyloid is abnormal, but cognition is unaffected. This can progress into mild cognitive impairment (MCI) which can ultimately evolve into clinically apparent AD dementia [6]. More than 400 million people are affected across the AD continuum on a global scale, costing more than a trillion US dollars annually [7]. In addition, dementia is the most prevalent chronic neurological disease that requires caregiving [3]. As with many other chronic diseases, caregiving in AD is often provided by informal care partners, and a recent study has shown that care partners of individuals living with AD spend more hours per week on average than care partners of individuals with conditions other than AD [8].
There is an increased focus on the care of individuals with AD and a reduction of the burden of care in partners has become a public focus area [9, 10]. One way of measuring the care partner burden is through patient-reported outcome measures (PROMs) as they provide a standardized way to measure the perceptions and experiences of the care partners [11].
In addition to the PROMs themselves, it is relevant to look at the minimal clinically important difference (MCID). The concept pertains to the smallest quantifiable alteration in a score that is deemed clinically significant and is perceived by patients as a noteworthy improvement or deterioration in their health status. It is important to recognize that a statistical variation does not necessarily correspond to a clinically relevant modification, particularly when evaluating PROMs [12].
Few studies report direct comparisons of the burden of care in partners of individuals with AD with the burden of care in partners of individuals with other chronic diseases, and no studies have systematically compared AD with numerous other chronic diseases in the same study.
The current study therefore aimed to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review including studies investigating care partner burden of individual chronic diseases through PROMs.
Methods
Two search strings were created to identify relevant data on care partner burden of AD and other chronic diseases (Supplementary Table 1). The two searches were conducted on PubMed in September and October 2022 to identify data on care partner burden for AD and other chronic diseases from the last decade. One researcher screened titles and abstracts to determine if they met the eligibility criteria.
Eligibility Criteria
Journal articles published during the last 10 years were included in both searches. No geographical restrictions were imposed on the search in this study. The inclusion criteria were:
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Care partners of individuals with AD or another chronic disease
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Completion of one or more PROMs in the article
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Studies in English language only
Exclusion criteria for the screened articles were:
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Studies not reporting either mean or standard deviation (SD) of the PROM values
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Another type of dementia than AD
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Studies reporting PROM values based on more than one disease (comorbidities)
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Randomized clinical trials and method papers
Data Extraction and Analysis
Data about diseases, PROMs and study results, including mean and SD, if reported, were entered into a data extraction table. Data collection was grouped according to the PROMs employed and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted according to the number of participants in the studies reporting care partner burden in other chronic diseases. This was done to obtain an estimate of the total and to obtain the correct weight of the respective studies for each PROM. All values are reported as mean and standard deviation (SD) in this study.
Review Manager (RevMan 5.4, Cochrane Collaboration, Oxford, England) was used to create forest plots, illustrating comparisons between burden of caregiving in AD and burden of caregiving in other chronic diseases. Mean differences and SD were calculated across studies to allow for comparisons between AD and other chronic diseases.
Patient-Reported Outcome Measures
The included PROMs were pre-defined as EuroQol-5 Domain-5 Level (EQ-5D-5L), General Anxiety Disorder-7 (GAD-7), General Health Questionnaire-12 (GHQ-12), Patient Health Questionnaire-9 (PHQ-9), Work Productivity and Activity Impairment (WPAI) and Zarit Burden Interview (ZBI). These measurements allowed for comparisons to be made across studies and provided a nuanced perspective on the burden in care partners of individuals with AD and care partners of individuals with other chronic diseases.
Minimal Clinically Important Difference
MCID in each unique PROM is defined as the smallest change in a score that is perceived as meaningful by the patient or care partner [12, 13].
EuroQol-5 Domain-5 Level
EQ-5D-5L is a standardized measure of QoL consisting of five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. Each dimension has five levels of severity: no problems, slight problems, moderate problems, severe problems and unable to perform or extreme severity. The measurement was conducted with a visual analogue scale and provided a single value of the global QoL ranging from 0 (worst imaginable health) to 1 (perfect health) [14, 15]. The MCID for the EQ-5D-5L was defined as 0.1 based on a single study of patients with stroke [13].
General Anxiety Disorder-7
GAD-7 is a self-report questionnaire used to assess the generalized anxiety in adults. It consists of seven questions about anxiety symptoms and their frequency in the past 2 weeks. The frequency is rated on a four-point scale ranging from not at all (1 point), several days (2 points), more than half the days (3 points) to nearly every day (4 points). The point range for the GAD-7 is from 0 to 21 points [16]. The MCID for GAD-7 ranges from 1.5 to 3.8 and is based on individuals with comorbid depression and anxiety symptoms [17, 18].
General Health Questionnaire-12
GHQ-12 is a self-report questionnaire consisting of 12 statements regarding mental health symptoms, sleeping troubles and feelings of being unable to cope. It uses a four-point scale to rate the severity of these common mental health symptoms, ranging from not at all (0 points), no more than usual (1 point), somewhat more than usual (2 points), to much more than usual (3 points). The total score ranges from 0 to 36 points with a higher score indicating increased psychological distress [19]. The MCID has yet to be defined for the GHQ-12.
Patient Health Questionnaire-9
PHQ-9 is a self-administered 9-item questionnaire measuring the severity of depression. The sum of scores determines the severity of depression, where a score of 1 to 4 indicates no depression severity, a score of 5–9 indicates mild depression, a score of 10–14 indicates moderate, a score of 15–19 indicates moderately severe depression and a score of more than 20 indicates severe depression. The total score ranges from 0 to 27 points [20]. The MCID for PHQ-9 ranged from 1.7 to 4.78 in depression [17, 21].
Work Productivity and Activity Impairment
WPAI is a self-report questionnaire assessing the impact of health conditions on work productivity and activity impairment. The sum of score captures the impact of a health condition on overall productivity and functioning, including absenteeism and presenteeism. It covers the following domains, all affected as a result of the health condition: absence from work, reduction in work productivity while at work, impairment in daily activities, impairment in leisure activities and overall impairment in work productivity and activity. The responses are used to calculate a percentage of work productivity and activity impairment, thus having a total score ranging from 0 to 100, with higher scores indicating a greater impairment [22]. The MCID for WPAI was defined for each domain: absenteeism ranged from 6.3 [23] to 8.9 [24], presenteeism ranged from 32.4 [24] to 37 [23], work productivity loss ranged from 20 [25] to 41.3 [23] and activity impairment ranged from 20 [25] to 47.5 [23].
Zarit Burden Interview
ZBI is a structured interview specifically assessing the burden of caring for a person with a chronic illness. It consists of 22 questions that elicit information about the physical, emotional and social impact of caregiving on the care partner. A five-point scale is used to rate the frequency of specific tasks and responsibilities for the care partner: never (0 points), rarely (1 point), sometimes (2 points), often (3 points) and almost always (4 points). The overall score of the ZBI ranges from 0 to 88 points [11, 26] and has four levels of burden: no or little burden (0–20 points), mild to moderate burden (21–40 points), moderate to severe burden (41–60 points) and severe burden (61–88 points) [27]. There is no defined MCID value for the ZBI.
Compliance with Ethics Guidelines
This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.
Results
The search string for AD resulted in 542 studies and the search string for other chronic diseases resulted in 636 studies totalling 1178 published articles. Of these, 860 studies and six duplicates were excluded on the basis of title and abstract screening. The resulting 312 studies were screened. This led to the inclusion of 15 studies relating to the care partner burden in AD and 39 studies relating to the care partner burden in other chronic diseases (Fig. 1).
The 15 studies relating to AD reported data from a total of 2277 care partners of individuals with AD at any stage. A majority of the included care partners of individuals with AD, 1860 individuals, belonged to studies using the ZBI. The number of participants in the studies reporting data on care partner burden in AD ranged from 12 to 454 participants per study. Six studies reported data from Europe, five studies reported data from Asia, two studies reported data from North America, one study reported data from South America and one study reported data from Australia and Oceania (Table 1).
Data from a total of 7957 care partners of individuals with other chronic diseases were reported in the 39 studies. Again, a majority of studies utilised ZBI to assess the care partner burden, comprising data from a total of 4331 participants. The sample size ranged from 26 to 1380 in the studies reporting data on care partner burden in other chronic diseases. Eighteen studies reported data from Asia, nine studies reported data from North America, 11 studies reported data from Europe, two studies reported data from Australia and Oceania, two studies reported data from Africa while one study reported data from South America (Table 2).
In total, 10,234 care partners were included in this study, of which 2919 were care partners of individuals with AD and 7957 were care partners of individuals with various other chronic diseases.
ZBI was the most frequently utilized PROM in both searches to capture care partner burden (12 studies in AD and 26 studies in other chronic diseases), reporting a mean value of 36.80 with a SD of 18.35 indicating a moderate burden of care of individuals with AD (Table 3). The burden of care experienced by care partners of individuals with AD as measured by ZBI was higher for most of the other included diseases, although not higher for bipolar affective disorder (mean 59.11, SD 17.8), schizophrenia (mean 55.92, SD 17.43) and motor neuron disease (mean 37.43, SD 18.75). Across diseases, the highest value reported for ZBI was 59.11 (bipolar affective disorder) [28], while the lowest value reported was 0.77 (chronic musculoskeletal pain) [29] (Fig. 2). The total mean difference from the meta-analysis (Fig. 3) with 95% confidence interval was 13.68 [12.78, 14.58] for a greater care partner burden of AD.
According to the PHQ-9 (one study in AD and five studies in other chronic diseases), the burden of care in partners of individuals with AD (mean 4.7, SD 4.7) was found to be greater in comparison to care partners of individuals with heart failure (mean 3.53, SD 4.9) and individuals receiving haematopoietic cell transplantations (mean 2.4, SD 1.8) [30, 31], while caring for individuals with cancer (mean 6.47, SD 6.07) and depression (mean 10.26, SD 5.35) led to a greater burden compared to caring for individuals with AD [32, 33]. Overall, there was no significant difference between AD and the other diseases in this PROM with a mean difference of − 0.74 [− 3.76, 2.28] (Table 3).
GHQ-12 measurements (one study in AD and three studies in other chronic diseases) showed a much higher burden of care in partners of individuals with thalassaemia (mean 32, SD 4.25) compared to care partners of individuals with AD (mean 13.23, SD 6.85) [34]. A mean value for the burden on care partners of individuals with rare lung diseases such as cystic fibrosis, interstitial lung disease and primary ciliary dyskinesia (mean 13.1, SD 4.1) was calculated, and was similar to that for the care partners of individuals with AD [35]. Finally, a greater burden was reported among the care partners of individuals with AD than both care partners of individuals with acquired brain injuries (mean 9.3, SD 5.9) and care partners of individuals with chronic developmental diseases (mean 8.1, SD 5.3) [36]. The combined result was not significant with a wide 95% confidence interval due to a high level of heterogeneity and a relatively low number of patients in the studies (Table 3).
The GAD-7 (one study in AD and three studies in other chronic diseases) showed that care partners of individuals with AD experienced generalized anxiety (mean 5.18, SD 4.9) to a lesser degree than care partners of individuals with anxiety (mean 8.55, SD 5.03) [32] and cancer (mean 13.36, SD 5.93) [33, 37] with a total mean difference of − 5.82 [− 10.53, − 1.11] (Table 3). This was significant and the mean difference was notably bigger than the reported MCID value range.
The EQ-5D-5L (one study in AD and one study in other chronic diseases) compared the QoL in care partners of individuals with AD (mean 0.885, SD 0.126) to that of care partners of individuals with asthma (mean 0.88, SD 0.13) and chronic obstructive pulmonary disease (mean 0.85, SD 0.17) [38]. The QoL assessed by the EQ-5D-5L showed no overall difference between the care partners of the different conditions (Table 3).
The WPAI (one study in AD and five studies in other chronic diseases) showed that care partners of individuals with depression (mean 41.72, SD 32.03) had the highest levels of overall impairment in work productivity and activity [39]. Care partners of individuals with asthma (mean 30.75, SD 23.13) and cystic fibrosis (mean 32.8, SD 37.8) also showed slightly higher levels of overall impairment compared to care partners of individuals with AD (mean 28.9, SD 32.8) [38, 40], while care partners of individuals with chronic obstructive pulmonary disease (mean 12.69, SD 8.4) showed the lowest levels [38, 41]. Finally, the overall impairment in work productivity and activity was found to be similar between care partners of individuals with AD and care partners of individuals with rheumatoid arthritis (mean 29, SD 26) [42]. The combined result was not significant.
Minimal Clinically Important Difference
The MCID has been established for four of the health measures included in the study (namely EQ-5D-5L, GAD-7, PHQ-9 and WPAI), however it has yet to be defined for the remaining two measures (GHQ-12 and ZBI). In the EQ-5D-5L, the MCID values were determined to be 0.1 measured on patients with stroke [13]. The MCID values for depression as measured by the GAD-7 scale ranged between 1.5 [17] and 3.8 [18]. The PHQ-9 MCID values revealed a modestly low score in depression [17, 43]. The MCID values of the WPAI were only evaluated in the context of dermatological and rheumatoid diseases and indicated that absenteeism was lower in rheumatoid arthritis [23] compared to psoriatic arthritis [24], presenteeism was higher in rheumatoid arthritis [23], work productivity loss was lower in psoriasis [25], and activity impairment was lower in psoriasis [25] in comparison to the aforementioned diseases. For further information, see Supplementary Table 2. The results obtained from the MCID analysis were restricted by the paucity of available data. There is no available information on MCID values in GHQ-12 and ZBI, and the current information is not based on dementia.
Discussion
The aim of this systematic literature review was to compare the care partner burden of AD to that of other chronic diseases. Two search strings were conducted for care partners of AD and care partners of other chronic diseases, respectively. Data was extracted from six pre-defined PROMs from which mean values and SD were calculated and compared.
The findings from this review were mixed. The results of the published literature, as measured by the EQ-5D-5L, WPAI and the ZBI, indicate a greater burden of care in partners of individuals with AD. Conversely, the results from the GAD-7 and GHQ-12 suggest that care partners of individuals with other chronic diseases experience a greater burden. Lastly, the PHQ-9 shows the same burden experienced in care partners of individuals with AD and care partners of individuals with other chronic diseases.
The results of multiple PROMs have indicated a greater burden among care partners of individuals diagnosed with psychiatric disorders as compared to those diagnosed with AD. Specifically, the ZBI revealed a higher experienced burden in care partners of individuals diagnosed with bipolar affective disorder and schizophrenia, while the PHQ-9 and the WPAI revealed heightened levels of impairment in care partners of individuals diagnosed with depression. In general, neuropsychiatric diseases demonstrated a greater burden in the ZBI compared to somatic diseases. Furthermore, the GAD-7 revealed a greater burden in care partners of individuals diagnosed with anxiety disorders.
However, it is important to note that the results of the PROMs for heart failure, as measured by the ZBI and the PHQ-9, suggested a lesser burden and fewer depressive symptoms in care partners. Additionally, the results for PROMs measuring cancer were found to be divergent in comparison to AD. The values in ZBI suggested that cancer imposed a lesser burden on care partners than AD but led to more frequent depressive symptoms and greater anxiety. The discrepancy may be attributed to the various subtypes of cancer and the differing symptomatology and associated burden on care partners.
Tu et al. [8] conducted a similar, but not identical, systematic review of 15 PROMs focusing on four PROMs: the ZBI, the Screen for Caregiver Burden (SCB), the Caregiver Burden Inventory (CBI) and the Burden Scale for Family Caregivers (BSFC). These PROMs were developed to assess the burden experienced by care partners of individuals with various conditions. However, the SCB and BSFC are specifically aimed at evaluating the burden of spousal care partners and family care partners of individuals with dementia [8]. According to Tu et al. [8], the ZBI may be the most appropriate PROM for comparing the burden among unpaid family caregivers. Despite this, the SCB offers a more comprehensive examination of the burden and its variations while the CBI, on the other hand, is capable of precisely identifying disparities in the burden of care among care partners [44]. Furthermore, the BSFC has been recognized to possess two important advantages over the ZBI: firstly, it includes 11 items compared to the ZBI’s four items, reducing the risk of response bias [45]. Secondly, the BSFC items encompass the care partner’s unfulfilled wishes in addition to the interactions between the care receiver and the care partner, whereas the ZBI items are limited to the recipient of care. Future studies could benefit from including these PROMs (SCB, CBI, BSFC and ZBI) to better illuminate the burden of care from all perspectives.
Relevance of Minimal Clinically Important Difference
The use of PROMs and their respective MCID is of great significance for healthcare professionals, who can use the data to deliver better treatment and improve the well-being of both care recipients and care partners. The findings of the MCID are restricted to only a few diseases, highlighting the need for further research in this area to gain a more comprehensive understanding of its utility in clinical practice. More research is needed to assess the MCID of the GHQ-12 and the ZBI.
Limitations
Only studies from 2012 to 2022 were included, of which the pre-specified PROMs were selected and analysed. These PROMs are susceptible to bias and may be influenced by factors such as the emotional state of care partners during the completion of the survey. Missing data such as SD may be due to selection bias or the affected manner of the informal care partners, as some may be cautious when reporting the informal burden for personal reasons (guilty conscience, self-reproach, or sympathy to the care-recipient). Confounding factors such as age, sex, socioeconomic status and lifestyle factors including diet, exercise, smoking and alcohol consumption have not been adjusted for, potentially leading to a biased estimation of the actual burden imposed on care partners. Brandt et al. found a lesser burden in informal care partners with higher socioeconomic status and more resources resulting in a higher QoL score [46].
There is a persistent lack of consistency in the definition and reporting of care partners burden and the characteristics of both the care-recipient and the care partner in the literature [47,48,49,50]. It is important to consider the impact of the disease on the care partner burden experienced by the informal care partner in this study. The variability of the disease symptoms and care requirements among the studies should be taken into account when interpreting the results [51, 52]. In this study, diseases are reported without considering their various stages. For instance, AD is reported as a single value despite encompassing mild, moderate and severe dementia, with mild cognitive impairment preceding these stages of AD [53]. It is expected that as the disease progresses, the burden on care partners increases. Similar expectations apply to different types and stages of cancer, as well as different severities of other diseases.
Additionally, the PROMs assess the informal care burden at a single point in time and they do not provide information on changes in burden over time.
The most frequently used PROM in this study, the ZBI, has multiple limitations. It only assesses the care partner burden at a global level and it does not provide information on specific domains of burden, such as physical, emotional or financial strain and, therefore, the remaining questionnaires were included. Overall, while the ZBI is a useful tool for assessing care partner burden, it is important to consider its limitations and considerations should be given to using it in conjunction with other PROMs to obtain a comprehensive understanding of the care partner’s experience of providing care.
The assessment of the burden of care partners in the context of AD and other chronic diseases was performed using instruments measuring anxiety, depression, psychological distress and experienced burden. The PROMs had a comprehensive range of reported data to obtain the most informative result.
The study may have included care partners of individuals with other subtypes, as there are few studies that confirm the diagnosis of AD using biomarkers in accordance with the NINCDS-ADRDA (National Institute of Neurological Disorders and Stroke–Alzheimer’s Disease and Related Disorders Association) criteria. Care partners may not be able to make the differentiation between dementia subtypes, hence the burden may be perceived as similar from a care partners perspective [3]. The use of biomarkers allows AD to be distinguished from other dementia subtypes with higher sensitivity and specificity [54]. The clinical diagnosis of AD is thus supported by biological markers according to the NINCDS-ADRDA criteria, but access to the use of biological markers in clinical settings is often limited [55]. However, with the development of blood biomarkers instead of cerebrospinal fluid markers, this will be greatly facilitated as described by Karikari et al., who measured tau-biomarkers in blood [54]. In the present study, the inclusion of other subtypes of dementia could result in an overestimation or an underestimation of the combined effect. Future research is needed to assess how different subtypes of dementia may affect care partners differently.
Lastly, a limitation in the comparisons of AD and the chronic diseases is that they vary in severity and duration. The progressive nature of the different diseases is very heterogeneous, but it has not been possible to correct for this as the data in the included articles did not provide these details.
Perspectives
The utilization of PROMs is of great significance in comprehending the cultural and societal patterns associated with the caregiving experience. These PROMs provide a systematic and quantifiable means of capturing the experience of burden in partners of individuals with chronic diseases, while also preserving meaningful insights into the experience [8].
For healthcare professionals, PROMs collected from informal care partners are essential to attaining a deeper comprehension of the disease’s dynamics and ensuring the delivery of optimal treatment. The assessment of burden of care in partners can not only enhance the psychological well-being of the care partner but also that of the care receiver. Hence, the completion of PROMs is beneficial to both the care receiver and the care partner [8].
PROMs are of benefit to the public as one of their purposes of measuring caregiving burden is to facilitate the development of services and interventions based on empirical evidence [56]. A more comprehensive understanding of caregiving burden can guide the focus areas of the health sector towards inclusiveness of both individuals with dementia and their care partners. However, researchers must exercise caution in the assessment of burden using PROMs as care partners may be hesitant or even unwilling to openly acknowledge their caregiving burden [45].
Conclusion
The results of this study were mixed, with some PROMs indicating a greater burden for care partners of individuals with AD versus other chronic diseases and other PROMs showing a greater burden for care partners of individuals with other chronic diseases. Psychiatric disorders imposed a greater burden on care partners compared to AD, while somatic diseases in the musculoskeletal system resulted in a significantly smaller burden on care partners compared to AD.
References
Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311:1052–9.
Golics CJ, Basra MKA, Finlay AY, Salek S. The impact of disease on family members: a critical aspect of medical care. J R Soc Med. 2013;106:399–407.
World Alzheimer Report 2022 – Life after diagnosis: Navigating treatment, care and support. https://www.alzint.org/resource/world-alzheimer-report-2022/. Accessed 9 Mar 2023.
Ferri CP, Prince M, Brayne C, et al. Global prevalence of dementia: a Delphi consensus study. Lancet. 2005;366(9503):2112–7.
Tiwari S, Atluri V, Kaushik A, Yndart A, Nair M. Alzheimer’s disease: pathogenesis, diagnostics, and therapeutics. Int J Nanomed. 2019;14:5541–54.
Molinuevo JL, Minguillon C, Rami L, Gispert JD. The rationale behind the new Alzheimer’s disease conceptualization: lessons learned during the last decades. J Alzheimers Dis. 2018;62:1067–77.
Gustavsson A, Norton N, Fast T, et al. Global estimates on the number of persons across the Alzheimer’s disease continuum. Alzheimers Dement. 2023;19:658–70.
Tu JY, Jin G, Chen JH, Chen YC. Caregiver burden and dementia: a systematic review of self-report instruments. J Alzheimers Dis. 2022;86:1527–43.
Jones RW, Lebrec J, Kahle-Wrobleski K, et al. Disease progression in mild dementia due to Alzheimer disease in an 18-month observational study (GERAS): the impact on costs and caregiver outcomes. Dement Geriatr Cogn Dis Extra. 2017;7(1):87–100.
Kawano Y, Terada S, Takenoshita S, et al. Patient affect and caregiver burden in dementia. Psychogeriatrics. 2020;20(2):189–95.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden 1. Gerontologist. 1980;20(6):649–55.
Hays RD, Woolley JM. The concept of clinically meaningful difference in health-related quality-of-life research how meaningful is it? Pharmacoeconomics. 2000;18:419–23.
Chen P, Lin KC, Liing RJ, Wu CY, Chen CL, Chang KC. Validity, responsiveness, and minimal clinically important difference of EQ-5D-5L in stroke patients undergoing rehabilitation. Qual Life Res. 2016;25(6):1585–96.
EuroQol Group. EuroQol–a new facility for the measurement of health-related quality of life. Health Policy. 1990;16:199–208.
Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.
Spitzer RL, Kroenke K, Williams JBW, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–7.
Kounali D, Button KS, Lewis G, et al. How much change is enough? Evidence from a longitudinal study on depression in UK primary care. Psychol Med. 2022;52(10):1875–82.
Toussaint A, Hüsing P, Gumz A, et al. Sensitivity to change and minimal clinically important difference of the 7-item generalized anxiety disorder questionnaire (GAD-7). J Affect Disord. 2020;265:395–401.
del Sánchez-López MP, Dresch V. The 12-Item General Health Questionnaire (GHQ-12): reliability, external validity and factor structure in the Spanish population. Psicothema. 2008;20(4):839–43.
Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–13.
Löwe B, Unützer J, Callahan CM, Perkins AJ, Kroenke K. Monitoring depression treatment outcomes with the patient health questionnaire-9. Med Care. 2004;42:1194–201.
Prasad M, Wahlqvist P, Shikiar R, Chen Y, Shih T. A review of self-report instruments measuring health-related work productivity a patient-reported outcomes perspective. Pharmacoeconomics. 2004;22:225–44.
Tanaka Y, Takeuchi T, Izutsu H, et al. Patient- and physician-reported outcomes from two phase 3 randomized studies (RAJ3 and RAJ4) of peficitinib (ASP015K) in Asian patients with rheumatoid arthritis. Arthritis Res Ther. 2021;23(1):221.
Tillett W, Lin CY, Sprabery AT, et al. Clinically meaningful improvement in work productivity loss in active psoriatic arthritis: post-hoc analysis of SPIRIT-P1 and SPIRIT-P2 trials. Clin Exp Rheumatol. 2020;38:1227–30.
Wu JJ, Lin C, Sun L, et al. Minimal clinically important difference (MCID) for work productivity and activity impairment (WPAI) questionnaire in psoriasis patients. J Eur Acad Dermatol Venereol. 2019;33:257–8.
Seng BK, Luo N, Ng WY, et al. Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. 2014. https://www.researchgate.net/publication/47730030. Accessed 9 Mar 2023.
Dixit D, Spreadbury J, Orlando R, Hayward E, Kipps C. Quality of life assessments in individuals with young-onset dementia and their caregivers. J Geriatr Psychiatry Neurol. 2021;34(5):426–33.
Tanna K. Evaluation of burden felt by caregivers of patients with schizophrenia and bipolar disorder. Ind Psychiatry J. 2021;30(2):299.
Mohammadi S, de Boer MJ, Sanderman R, Hagedoorn M. Caregiving demands and caregivers’ psychological outcomes: the mediating role of perceived injustice. Clin Rehabil. 2017;31(3):403–13.
Durante A, Ahtisham Y, Cuoco A, et al. Informal caregivers of people with heart failure and resilience: a convergent mixed methods study. J Adv Nurs. 2022;78(1):264–75.
Gupta V, Raj M, Hoodin F, Yahng L, Braun T, Choi SW. Electronic health record portal use by family caregivers of patients undergoing hematopoietic cell transplantation: United States national survey study. JMIR Cancer. 2021;7:e26509.
Batmaz SB, Birinci G, Aslan EA. Quality of life of children with allergic disease: the effect of depression and anxiety of children and their mothers. J Asthma. 2022;59(9):1776–86.
Levesque JV, Farnsworth C, Luckey R, Hart R, Hegarty S. Fear, worry and sadness: an exploratory study of psychological wellbeing in men caring for their partner with ovarian cancer. Support Care Cancer. 2022;30(1):825–33.
Moradabadi A, Dadipoor S, Haghighi H, et al. Investigating the mental health and coping strategies of parents with major thalassemic children in Bandar Abbas. J Educ Health Promot. 2015;4(1):59.
Ademhan Tural D, Emiralioglu N, Tural Hesapcioglu S, et al. Psychiatric and general health effects of COVID-19 pandemic on children with chronic lung disease and parents’ coping styles. Pediatr Pulmonol. 2020;55(12):3579–86.
Silberg T, Brezner A, Gal G, Ahonniska-Assa J, Levav M. The role of maternal distress in the report of behavioral and emotional problems among children with chronic disabilities. Isr J Psychiatry Relat Sci. 2016;53:17–24.
Akkuş Y, Karacan Y, Ünlü K, Deniz M, Parlak A. The effect of anxiety and spiritual well-being on the care burden of caregivers of cancer patients during the COVID-19 pandemic. Support Care Cancer. 2022;30(2):1863–72.
Majellano EC, Clark VL, Gibson PG, Foster JM, McDonald VM. The needs and well-being of severe asthma and COPD carers: a cross-sectional study. Respirology. 2022;27(2):134–43.
Balkaran BL, Jaffe DH, Umuhire D, Rive B, Milz RU. Self-reported burden of caregiver of adults with depression: a cross-sectional study in five Western European countries. BMC Psychiatry. 2021;21(1):312.
Suthoff E, Mainz JG, Cox DW, et al. Caregiver burden due to pulmonary exacerbations in patients with cystic fibrosis. J Pediatr. 2019;215:164–171.e2.
Rehman AU, Muhammad SA, Tasleem Z, et al. Humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia. Sci Rep. 2021;11(1):22598.
Galloway J, Edwards J, Bhagat S, et al. Direct healthcare resource utilisation, health-related quality of life, and work productivity in patients with moderate rheumatoid arthritis: an observational study. BMC Musculoskelet Disord. 2021;22(1):277.
Bauer-Staeb C, Kounali DZ, Welton NJ, et al. Effective dose 50 method as the minimal clinically important difference: evidence from depression trials. J Clin Epidemiol. 2021;137:200–8.
Novak M, Guest C. Application of a Multidimensional Caregiver Burden Inventory 1. 1989. https://academic.oup.com/gerontologist/article/29/6/798/594539. Accessed 9 Mar 2023.
Davis KL, Marin DB, Kane R, et al. The caregiver activity survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer’s disease. Int J Geriatr Psychiatry. 1997;12(10):978–88.
Brandt M, Kaschowitz J, Quashie NT. Socioeconomic inequalities in the wellbeing of informal caregivers across Europe. Aging Ment Health. 2022;26(8):1589–96.
van der Lee J, Bakker TJEM, Duivenvoorden HJ, Dröes RM. Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Res Rev. 2014;15:76–93.
Ge L, Mordiffi SZ. Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nurs. 2017;40(6):471–8.
Rigby H, Gubitz G, Phillips S. A systematic review of caregiver burden following stroke. Int J Stroke. 2009;4(4):285–92.
Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62:340–50.
Hughes TB, Black BS, Albert M, et al. Correlates of objective and subjective measures of caregiver burden among dementia caregivers: influence of unmet patient and caregiver dementia-related care needs. Int Psychogeriatr. 2014;26(11):1875–83.
Harding R, Gao W, Jackson D, Pearson C, Murray J, Higginson IJ. Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symptom Manage. 2015;50(4):445–52.
Breijyeh Z, Karaman R. Comprehensive review on Alzheimer’s disease: causes and treatment. Molecules. 2020;25:5789.
Karikari TK, Ashton NJ, Rodriguez JL, et al. Blood phosphorylated tau 181 as a biomarker for Alzheimer’s disease: a diagnostic performance and prediction modelling study using data from four prospective cohorts. Lancet Neurol. 2020;19(5):422–33.
McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7(3):263–9.
Keady J, Nolan M. Behavioural and instrumental stressors in dementia (BISID): refocussing the assessment of caregiver need in dementia. J Psychiatr Ment Health Nurs. 1996;3(3):163–72.
Huang WC, Chang MC, Wang WF, Jhang KM. A comparison of caregiver burden for different types of dementia: an 18-month retrospective cohort study. Front Psychol. 2022;12:798315.
Igarashi A, Fukuda A, Teng L, Ma FF, Dorey J, Onishi Y. Family caregiving in dementia and its impact on quality of life and economic burden in Japan-web based survey. J Mark Access Health Policy. 2020;8(1):1720068.
Kumfor F, Teo D, Miller L, et al. Examining the relationship between autobiographical memory impairment and carer burden in dementia syndromes. J Alzheimers Dis. 2016;51(1):237–48.
Lee SM, Lee Y, Choi SH, Lim TS, Moon SY. Clinical and demographic predictors of adverse outcomes in caregivers of patients with dementia. Dement Neurocogn Disord. 2019;18(1):10.
Lima-Silva TB, Bahia VS, Carvalho VA, et al. Neuropsychiatric symptoms, caregiver burden and distress in behavioral-variant frontotemporal dementia and Alzheimer’s disease. Dement Geriatr Cogn Disord. 2015;40(5–6):268–75.
Martinez M, Multani N, Anor CJ, et al. Emotion detection deficits and decreased empathy in patients with Alzheimer’s disease and Parkinson’s disease affect caregiver mood and burden. Front Aging Neurosci. 2018;10:120.
Mougias AA, Politis A, Mougias MA, et al. The burden of caring for patients with dementia and its predictors. Psychiatriki. 2015;26(1):28–37.
Mougias AA, Christidi F, Kontogianni E, Skaltsounaki E, Politis A, Politis A. Patient-and caregiver-related factors associated with caregiver assessed global deterioration scale scoring in demented patients. Curr Gerontol Geriatr Res. 2018;2018:9396160.
Sinha P, Desai NG, Prakash O, Kushwaha S, Tripathi CB. Caregiver burden in Alzheimer-type dementia and psychosis: a comparative study from India. Asian J Psychiatr. 2017;1(26):86–91.
Gonçalves-Pereira M, Zarit SH, Cardoso AM, da Silva JA, Papoila AL, Mateos R. A comparison of primary and secondary caregivers of persons with dementia. Psychol Aging. 2020;35(1):20–7.
Jennings LA, Reuben DB, Evertson LC, et al. Unmet needs of caregivers of individuals referred to a dementia care program. J Am Geriatr Soc. 2015;63(2):282–9.
Avargues-Navarro ML, Borda-Mas M, de las Campos-Puente AM, Pérez-San-Gregorio MÁ, Martín-Rodríguez A, Sánchez-Martín M. Caring for family members with Alzheimer’s and burnout syndrome: impairment of the health of housewives. Front Psychol. 2020;11:576.
Alexopoulos P, Soldatos R, Kontogianni E, et al. COVID-19 crisis effects on caregiver distress in neurocognitive disorder. J Alzheimers Dis. 2021;79(1):459–66.
Al Qadire M, Aloush S, Alkhalaileh M, Qandeel H, Al-Sabbah A. Burden among parents of children with cancer in jordan: prevalence and predictors. Cancer Nurs. 2020;43(5):396–401.
Arshad AR, Tahir T, Mir AW, Salahuddin. Psychological burden amongst caregivers of patients on maintenance haemodialysis. J Coll Physicians Surg Pak. 2021;31(6):743–5.
Bucak IH, Tumgor G, Almis H, Kose S, Dogan CN, Turgut M. Evaluation of burden and anxiety in caregivers of patients with pediatric celiac disease in the COVID-19 pandemic. Avicenna J Med. 2021;11(03):152–5.
Caro CC, Mendes PVB, Costa JD, Nock LJ, da Cruz DMC. Independence and cognition post-stroke and its relationship to burden and quality of life of family caregivers. Top Stroke Rehabil. 2017;24(3):194–9.
Hasuo H, Shizuma H, Fukunaga M. Factors associated with chronic thoracic spine and low back pain in caregivers of cancer patients. Ann Palliat Med. 2021;10(2):1224–36.
Hasuo H, Sakuma H, Fukunaga M. Alexithymia in family caregivers of advanced cancer patients is associated with high personalized pain goal scores: a pilot study. J Palliat Med. 2020;23(7):930–6.
Intas G, Rokana V, Stergiannis P, Chalari E, Anagnostopoulos F. Burden and sleeping disorders of family caregivers of hemodialysis patients with chronic kidney disease-end stage: a cross-sectional study. Adv Exp Med Biol. 2020;1196:33–40.
Jeong YG, Myong JP, Koo JW. The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients. Disabil Health J. 2015;8(4):619–25.
Kang A, Yu Z, Foo M, Chan CM, Griva K. Evaluating burden and quality of life among caregivers of patients receiving peritoneal dialysis. Perit Dial Int. 2019;39(2):176–80.
Kellner S, Morgan S, Gutierrez J, et al. Perceived embarrassment and caregiver burden in essential tremor caregivers. J Neurol Sci. 2017;383:205–10.
Lithin Z, Thomas P, Warrier G, et al. Palliative care needs and care giver burden in neurodegenerative diseases: a cross sectional study. Ann Indian Acad Neurol. 2020;23(3):313–7.
Macchi ZA, Koljack CE, Miyasaki JM, et al. Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach. Ann Cardiothorac Surg. 2020;9:S24–33.
Monarrez-Espino J, Delgado-Valles JA, Ramirez-Garcia G. Quality of life in primary caregivers of patients in peritoneal dialysis and hemodialysis. Braz J Nephrol. 2021;43:486–94.
Morgan S, Kellner S, Gutierrez J, et al. The experience of essential tremor caregivers: burden and its correlates. Front Neurol. 2017;8:396.
Nagarathnam M, Latheef S, Sivakumar V. Factors influencing scales of burden, coping mechanisms, and quality of life in caregivers of hemodialysis patients in Andhra Pradesh. Indian J Palliat Care. 2021;27(1):62–7.
Ogunmodede AJ, Abiodun O, Makanjuola AB, Olarinoye JK, Ogunmodede JA, Buhari OI. Burden of care and psychological distress in primary caregivers of patients with type -2 diabetes mellitus in a tertiary hospital in Nigeria. Ethiop J Health Sci. 2019;29(6):697–708.
Parekh NK, Shah S, McMaster K, et al. Effects of caregiver burden on quality of life and coping strategies utilized by caregivers of adult patients with inflammatory bowel disease. Ann Gastroenterol. 2017;30(1):89–95.
Rady A, Mouloukheya T, Gamal E. Posttraumatic stress symptoms, quality of life, and stress burden in caregivers of patients with severe mental illness: an underestimated health concern. Front Psychiatry. 2021;12:623499.
Ramos-Campos M, Redolat R, Mesa-Gresa P. The mediational role of burden and perceived stress in subjective memory complaints in informal cancer caregivers. Int J Environ Res Public Health. 2020;17(7):2190.
Roy A, Minaya M, Monegro M, et al. Partner burden: a common entity in celiac disease. Dig Dis Sci. 2016;61(12):3451–9.
Semere W, Althouse AD, Rosland AM, et al. Poor patient health is associated with higher caregiver burden for older adults with advanced cancer. J Geriatr Oncol. 2021;12(5):771–8.
Shamsaei F, Cheraghi F, Bashirian S. Burden on family caregivers for schizophrenia burden on family caregivers caring for patients with schizophrenia. Iran J Psychiatry. 2015;10:239–45.
Toledano-Toledano F, de la Rubia JM, Nabors LA, et al. Predictors of quality of life among parents of children with chronic diseases: a cross-sectional study. Healthcare (Basel). 2020;8(4):456.
Jeyagurunathan A, Sagayadevan V, Abdin E, et al. Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study. Health Qual Life Outcomes. 2017;15(1):106.
Yin X, Xie Q, Huang L, et al. Assessment of the psychological burden among family caregivers of people living with Alzheimer’s disease using the Zarit Burden Interview. J Alzheimers Dis. 2021;82:285–91.
Acknowledgements
The authors would like to thank all the participants in the studies used in this meta-analysis.
Funding
The Rapid Service Fee is funded by Novo Nordisk inc. (Bagsvaerd, Denmark).
Medical Writing and Editorial Assistance
The authors did not have any medical writing or editorial assistance for the manuscript.
Disclosures
Julie H. Hahn-Pedersen is employed by Novo Nordisk inc. (Bagsvaerd, Denmark). Henrik L. Jørgensen and Murat Demirbas have nothing to disclose.
Author Contributions
Murat Demirbas: Design and planning of the study, drafted the manuscript, statistical analysis. Julie Hviid Hahn-Pedersen: Design and planning of the study. Henrik Lovendahl Jorgensen: Design and planning of the study. All authors critically revised the manuscript for important intellectual content and approved the final manuscript.
Compliance with Ethics Guidelines
This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors.
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The data used in this meta-analysis is derived from original papers freely available in the public domain.
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Demirbas, M., Hahn-Pedersen, J.H. & Jørgensen, H.L. Comparison Between Burden of Care Partners of Individuals with Alzheimer’s Disease Versus Individuals with Other Chronic Diseases. Neurol Ther 12, 1051–1068 (2023). https://doi.org/10.1007/s40120-023-00493-6
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DOI: https://doi.org/10.1007/s40120-023-00493-6