Assessment of the Validity of the Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem)

doi:10.21203/rs.3.rs-3781319/v1

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Assessment of the Validity of the Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem)

https://doi.org/10.21203/rs.3.rs-3781319/v1

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Background

To support informal caregivers of people with dementia, it is crucial to identify sources of stress and burden, recognize early warning signs for timely intervention, and actively promote resilience. The Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem) has been developed to identify particularly vulnerable caregivers as early as possible and to derive specific recommendations for action. This article examines its reliability and construct validity.

Methods

The ResQ-Care-Dem was completed online by n = 243 informal caregivers of people with dementia. The reliability of the two resilience and two burden scales was assessed using Cronbach's alpha as a measure of internal consistency. The factorial structure was examined using a principal axis factor analysis. The convergent validity of the burden scales was assessed by correlations with the Zarit Burden Interview (ZBI-7). The convergent validity of the resilience scales was assessed using the Caregiver Self-Efficacy Scale (CES-8), the Gain in Alzheimer Care Instrument (GAIN), and the Quality of the Carer-Patient Relationship (QCPR) Questionnaire.

Results

The scales’ internal consistencies ranged between .65 and .81. The factorial structure could largely be confirmed, with the items of the four scales primarily loading on four factors. The burden scales demonstrated the expected high correlations with the ZBI-7 (.51 – .55). As expected, the resilience scales showed moderate to strong correlations with the CES-8 (.50 – .57), the GAIN (.27 – .50), and the QCPR (.28 – .59).

Conclusions

Overall, this study provided evidence supporting the reliability and construct validity of the ResQ-Care-Dem. In particular, the high correlations with other measures of the caregiver's situation suggest that the questionnaire is a concise yet comprehensive instrument for measuring stress and burden, as well as resilience factors in informal dementia caregivers simultaneously.

caregiver

dementia

resilience

burden

stress

homeostasis

In Germany, there are currently an estimated 1.8 million people living with dementia (1), and globally, the number exceeds 50 million and is expected to rise (2). Dementia is one of the primary causes for disability and dependency in later life (2). The majority of people with dementia is cared for by family members (3). Informal caregivers can experience significant stress and burden and are at risk of physical or psychological illnesses themselves (4, 5). Yet they are frequently overlooked within the healthcare system, which is why they are sometimes referred to as the "invisible second patient" (3).

In the past, the focus has been primarily on measuring caregiver burden (6) and examining its predictors, such as challenging behaviors of the person with dementia or the caregiver's own health status (7). Recently, attention has shifted toward factors associated with increased caregiver resilience, including caregiver self-efficacy and support from the social environment (8, 9). To support informal caregivers and to enable them to create stable care arrangements for the person living with dementia (10), it is crucial to identify sources of stress and burden, recognize early warning signs for timely intervention, and actively promote resilience.

The Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem)

Existing caregiver questionnaires often assess caregiver burden only indirectly, namely by principally assessing the situation of the person with dementia and thus not focusing on the caregiver per se. Wuttke-Linnemann et al. (11) aimed to develop a concise questionnaire with the twofold aim to a) identify particularly vulnerable caregivers as early as possible and b) to derive specific recommendations for action (11, 12).

The authors utilized the homeostasis model as their foundational framework. Individuals strive for homeostasis, a balanced state in which they can function optimally (13). In the face of stress, they respond with adaptive processes, known as allostatic processes, to return to homeostasis. When the challenge surpasses an individual’s coping abilities, for example because it occurs chronically, the allostatic system becomes overstimulated. This condition is referred to as allostatic load, and it is associated with poorer health outcomes (14). There are substantial interindividual differences in how people react to potentially stressful situations, which also depend on individual resilience factors (14). Therefore, for the effective counseling of informal caregivers, it is crucial to assess not only stress and burden but also resilience factors and to relate them to one another.

The development of the Resilience and Strain Questionnaire in Caregivers (ResQ-Care) was based on a literature review of predictors of stress and caregiver burden, as well as caregiver resilience (11, 12). There is a general version for informal caregivers (ResQ-Care) and a questionnaire version for informal caregivers of people with dementia, the Resilience and Strain Questionnaire for Dementia Caregivers (ResQ-Care-Dem). Both questionnaires consist of four scales, two of them are resilience scales that assess psychological aspects (“my inner attitude”, e.g., self-efficacy, growth) and social aspects (“my sources of energy”, e.g., social support) of caregiver resilience. Two further scales assess caregiver burden and stress factors. The first one measuring interpersonal burden (“difficulties in dealing with the person with dementia”, e.g., aggressive behaviour, wandering). This scale is where the general and the dementia-specific version of the questionnaire differ, with the dementia-specific version focusing on typical challenges in caring for a person with dementia, whereas the general version captures difficulties in dealing with the person in need of care more broadly. The other burden scale focuses on stress related to the caregiver's life situation (e.g., health issues or role conflicts).

The four scales are analyzed separately. Moreover, the level of stress and burden and the level of resilience factors are compared in relation to each other to obtain a comprehensive understanding of the caregiver’s situation. The goal is to identify vulnerable caregivers at risk for adverse health outcomes and to identify counseling and intervention needs to support informal caregivers (e.g. learning relaxation techniques and problem-solving skills, providing information about support services). The accompanying manual includes guidance on how to interpret questionnaire results, as well as instructions for deriving specific recommendations for counselling.

An initial validation study of the general version of the questionnaire provided information on the reliability and construct validity of the questionnaire (11). Internal consistency as a measure of reliability of the scales were within the moderate range. Regarding its factor structure, an exploratory factor analysis revealed four factors that largely corresponded to the four scales. Concerning convergent validity, as expected, there were moderate to high correlations between the resilience scales and the Brief Resilience Scale (BRS) (15), as well as between the burden scales and the Perceived Stress Scale (PSS-4) (16).

The Present Study

Validation is important to assess whether the questionnaire indeed measures what it purports to measure and to ensure that interpretations based on the questionnaire results are justified. An examination of the construct validity of the ResQ-Care-Dem, the questionnaire version for informal caregivers of people with dementia, has not been carried out yet. This study aims to address this research gap by investigating the reliability and construct validity (factor structure and convergent validity) of the questionnaire in a sample of informal dementia caregivers.

Regarding factorial validity, the study explored the factor structure, assessing the extent to which the four scales of the questionnaire formed four latent factors. To assess the convergent validity of the resilience scales, the GAin in Alzheimer Care INstrument (GAIN) was used, which measures aspects such as personal gains (“strength”, “resilience”) and higher level gains (“meaning of life”) through caregiving for a family member (17). Additionally, the Caregiver Self-Efficacy Scale (CSES-8) was employed (9). Self-efficacy is the belief in one's ability to handle difficult situations and challenges (18), and is a psychological resource associated with positive outcomes in challenging life situations (19). Particularly high correlations are expected between the ResQ-Care-Dem’s psychological resilience scale, which includes items related to caregiving self-efficacy and personal growth, and the GAIN and CSES-8 questionnaires. Furthermore, positive associations between the resilience scales and the quality of the caregiver-patient relationship, as measured by the Caregiver-Patient Relationship Questionnaire (QCPR), are anticipated.

To examine convergent validity of the subjective burden scales, the perhaps most widely used instrument for assessing subjective caregiver burden (20, 21), the Zarit Burden Interview (in the brief ZBI-7 version) (22), was employed. The ZBI-7 covers a wide range of aspects of caregiver burden, ranging from role conflicts to too many obligations to burdens related to role conflicts and health problems. High correlations between the burden scales of the ResQ-Care-Dem and the ZBI-7 are expected, as many of these aspects are also covered in the stress and burden scales of the ResQ-Care-Dem. Conversely, high negative associations of the ResQ-Care-Dem’s interpersonal burden scale "difficulties in the caregiver-patient relationship" with the QCPR are hypothesized.

Participants and Procedure

The data collection was conducted in collaboration with the German Alzheimer Society (Deutsche Alzheimer Gesellschaft e. V.), a German self-help organization for people living with dementia and their informal caregivers. In the December 2022 issue of the members' magazine, a questionnaire for informal caregivers of people with dementia, along with a QR code leading to an online version with a more extensive caregiver survey, was published. Furthermore, the questionnaire was promoted through the Alzheimer Society's newsletter and on social media platforms.

In total, 562 individuals started the online questionnaire. Of these, 243 completed the whole ResQ-Care-Dem questionnaire and formed the sample for the analyses. The participants had an average age of 59.7 years (standard deviation: 10.9, range: 27 to 92). The majority of caregivers, 84.8%, were female. The majority of the respondents took care of their parent (47.3%) or their partner (42.3%), a small percentage took care of their mother- or father-in-law (3.3%). The majority of the respondents had a job, 25.5% full-time and 37.5% part-time. Across all levels of education (school, vocational school, further education, university), respondents had invested an average of 15.2 years (standard deviation: 4.1) into their education.

The people with dementia who were cared for by their family members had an average age of 78.0 years (standard deviation: 10.5, range: 45 to 97). The majority of those receiving care, 59,3%, were female. According to the caregivers, the majority of those receiving care had moderate dementia (52.7%), followed by severe dementia (26.7%), mild dementia (17.3%), and mild cognitive impairment (2.9%).

Measures

Resilience and Strain Questionnaire for Dementia Caregivers (ResQ-Care-Dem) (11, 12)

The ResQ-Care-Dem questionnaire comprises four scales, two resilience and two burden scales, each consisting of five items. In addition, there is a basic scale with sociodemographic questions, which was not utilized in this questionnaire as sociodemographic information had already been collected in the survey. Respondents answered the items on a four-point scale ranging from 0 ("no") to 3 ("yes"). A sum score was calculated for each scale, with values ranging from 0 to 15. Higher scores on the resilience scales indicated higher resilience, while higher scores on the burden scales indicated higher caregiver burden.

Further Caregiver Questionnaires for Investigating Convergent Validity

Zarit Burden Interview (ZBI-7). The ZBI-7 is a 7-item short version (20, 23) of the original questionnaire, which consists of 22 items (22). It includes items such as whether the caregiver feels they do not have enough time for themselves, experiences stress balancing caregiving tasks and other responsibilities or notices negative health effects. Subjective caregiver burden was assessed on a five-point Likert scale ranging from 0 (never) to 4 (nearly always). The mean was computed as the total score, with higher values indicating higher burden.

Gain in Alzheimer Care INstrument (GAIN) (17). Nine items from the GAIN questionnaire were used to assess positive outcomes in dementia caregiving, including personal gains (e.g., "Providing care has made me stronger and more resilient"), gains in relationships (e.g., "Providing care has helped to bond my family closer"), and higher-level gains (e.g., "Providing care has given me deeper insights into the meaning of life"). The response scale ranged from 0 (disagree a lot) to 4 (agree a lot). The total score was calculated as the mean of the answered items, with higher values indicating higher gains in caregiving.

Caregiver Self-Efficacy Scale (CSES-8) (9). The CSES-8 is an 8-item questionnaire designed to assess self-efficacy in caregiving. An example item is: "How sure or confident are you that you can cope with unexpected or new situations that may come up with your care partner?" The response scale ranged from 0 (not at all confident) to 9 (totally confident). The total score was calculated as the mean, with higher values indicating higher self-efficacy.

Quality of the Carer-Patient Relationship Questionnaire (QCPR) (24). The 14 items of the QCPR were used to assess the quality of the dyadic carer-patient relationship. These items cover two areas: warmth and affection (e.g., "we accept each other as we are") and conflict and criticism (e.g., "we often disagree"). The response options ranged from 0 (totally disagree) to 4 (totally agree). Items were recoded so that higher values indicate a better quality of the relationship. The total score was calculated as the mean of the answered items.

Data Analysis

Construct Validity: Factor Structure

The dimensional structure of the ResQ-Care-Dem was examined using an exploratory factor analysis, the factor structure of the dementia-specific version of the questionnaire has not been examined before. As the goal was to examine underlying factors of the scales, a Principal Axis Factor Analysis was conducted. Since it was assumed that the scales are correlated with each other, an oblique rotation was performed and Promax was chosen as the rotation method. For factor extraction, the Kaiser criterion (25), a scree plot (26), and a parallel analysis (27) were employed.

Construct Validity: Convergent Validity

Correlations with the ZBI-7, GAIN, CSES-8, and QCPR were examined.

Reliability

The reliability of the four subscales was assessed using Cronbach's alpha as an indicator of internal consistency.

Construct Validity: Factor Structure

According to the Kaiser-Meyer-Olkin criterion (28), KMO = .81, the data were deemed suitable for this analysis ("meritorious" according to Kaiser & Rice (29)). Regarding the number of factors, different criteria for factor extraction yielded different results. Six factors met the Kaiser criterion of an eigenvalue greater than one. The Scree plot (26) was ambiguous, showing inflections that could justify both four or six factors. In the parallel analysis (27), five factors were above the intersection point of the line representing the sample and the one derived from random data. Based on these conflicting information, the more conservative Kaiser criterion was chosen, and all six factors with eigenvalues greater than 1 were extracted.

Table 1 displays the rotated factor loadings (pattern matrix) for all six factors with eigenvalues greater than 1, and the variance explained by each factor. The first factor can be interpreted as caregiver burden and stress related to the general living situation, as all items from the scale "general burdens of my living situation" show high loadings on it. Additionally, two resilience items (quick recovery from stress and pursuing personal interests) load highly negatively on this factor. The second factor represents burden related to caregiving for the person with dementia, with all items from the scale "difficulties in dealing with the person with dementia" loading on it, except for the item that asks about difficulties in assisting with activities of daily living. The third factor represents social resilience, items from the scale "my sources of energy" assessing, among others, support from the social environment and joy in everyday life, load highly on this factor. On the fourth factor, three items from the psychological resilience scale "my inner attitude," which assesses positive experiences in caregiving and the voluntary decision to take on caregiving responsibilities, show moderate to high loadings. The fifth factor is formed by additional items from this scale that assess self-efficacy and a sense of competence in caregiving. On the sixth factor, particularly one item from the scale "difficulties in dealing with the person with dementia", assessing difficulties due to the high demand of assistance with activities of daily living, shows a high factor loading.

Construct Validity: Convergent Validity

Table 2 displays the correlations of the ResQ-Care-Dem scales with other instruments assessing the situation of informal caregivers of people with dementia. As expected, the resilience scales "my inner attitude" and "my sources of energy" were positively correlated with scales measuring positive outcomes in caregiving (GAIN), caregiver self-efficacy (CSES-8), and the quality of the relationship (QCPR), which supports the convergent validity of the two resilience scales. As anticipated, there were particularly strong positive correlations between the resilience scale "my inner attitude" and positive outcomes in caregiving (GAIN) and caregiver self-efficacy (CSES-8).

Table 2

Descriptive statistics, reliability estimates, and bivariate correlations of the different questionnaires of the caregiver perspective in dementia care.
		M	SD	Min	Max	1	2	3	4	5	6	7	8
	ResQ-Care-Dem Dimensions
1	Resilience: My Inner Attitude	9.53	2.76	2.00	15.00	(.68)
2	Resilience: My Energy Sources	8.92	3.07	0.00	15.00	.36^**	(.70)
3	Burden: Difficulties in Dealing with the PwD	7.02	3.18	0.00	15.00	− .49^**	− .33^**	(.65)
4	Burden: General Burdens of my Living Situation	8.27	3.76	0.00	15.00	− .39^**	− .50^**	.37^**	(.81)
5	Zarit Burden Interview (ZBI-7)	2.26	0.77	0.43	4.00	− .50^**	− .45^**	.51^**	.55^**	(.88)
6	Gain in Alzheimer Care Instrument (GAIN)	2.04	0.73	0.00	3.89	.50^**	.27^**	− .21^**	− .22^**	− .27^**	(.83)
7	Caregiver Self-Efficacy Scale (CSES-8)	4.10	1.89	0.00	9.00	.57^**	.50^**	− .56^**	− .52^**	− .62^**	.36^**	(.86)
8	Quality of the Carer-Patient Relationship Questionnaire (QCPR)	2.51	0.70	0.64	4.00	.59^**	.28^**	− .57^**	− .29^**	− .47^**	.43^**	.44^**	(.29)

As expected, the two burden scales correlated highly with subjective caregiver burden as assessed by the ZBI-7. Moreover, as anticipated, there was a strong negative correlation between the burden scale "difficulties in dealing with the person with dementia" and the QCPR.

Reliability

Table 2 displays Cronbach’s alpha as a measure of internal consistency of the ResQ-Care-Dem scales. Reliability of the scales was moderate and ranged from .65 ("difficulties in dealing with the person with dementia") to .81 ("general burdens of my living situation").

The ResQ-Care-Dem is a recently developed questionnaire designed to assess stress and burden, as well as resilience factors among informal caregivers of people with dementia simultaneously. The questionnaire’s aim is to identify caregivers at risk for adverse health outcomes as early as possible and to derive themes for counselling. In the present study, the reliability and construct validity of the ResQ-Care-Dem was examined. Its construct validity was assessed by analysing its factor structure and the convergent validity with other instruments measuring the caregiver’s situation.

Reliability and Factor Structure

In accordance with the validation study of the ResQ-Care (11), Cronbach's alpha, as a measure of internal consistency of the scales, ranged from the lower to upper moderate range. This can be explained by the brevity of the scales, varying item difficulties within a scale, and the complexity of the constructs of interest. All of these factors reduce the intercorrelations of the items and, consequently, Cronbach's alpha (30, 31). The complexity within the scales can be illustrated, for example, by the psychological resilience scale "my inner attitude", which encompasses multiple psychological aspects of resilience, from self-efficacy and a sense of competence in caregiving to growth through caregiving, each of which is inherently complex. Acceptance of lower internal consistency scores is a trade-off to ensure a comprehensive coverage of burden and resilience within a compact scale.

In the principal axis factor analysis, the factorial structure of the ResQ-Care-Dem could be largely confirmed, with the items of the four scales primarily loading on four factors. However, there were also some secondary loadings and, depending on the criterion for factor extraction, one to two additional factors, representing the sense of competence and self-efficacy in caregiving and difficulties due to high demand of assistance with activities of daily living. This result aligns with the findings of the reliability analysis, indicating that the scales measure complex constructs.

In line with Wuttke-Linnemann et al. (2021), the burden scales explain more variance than the resilience scales confirming that burden currently weighs even more heavily than resilience. In this regard, the scale assessing the general living situation of the caregivers explained the highest proportion of variance, adding the importance of not only assessing the situation of the PwD as many burden scales do but to also assess the situation of the caregivers independently from the PwD.

Convergent Validity

Convergent validity was assessed through associations with other instruments measuring the caregiver’s situation. As expected, the burden scales demonstrated high and positive correlations with the most widely used questionnaire assessing subjective caregiver burden, the Zarit Burden Interview (20). As expected, the resilience scales were highly correlated with scales measuring positive caregiving outcomes, caregiver self-efficacy, and the quality of the caregiver-patient relationship. These anticipated strong associations support the construct validity of the questionnaire and its scales. They indicate that the burden scales validly assess the construct of subjective stress und burden, and that the resilience scales validly assess resources and positive outcomes in caregiving.

Limitations

The sample used for these analyses is not representative of informal caregivers of people with dementia in Germany as the questionnaire was promoted through the members' magazine of the German Alzheimer's Society and social media, and as it was conducted online. It therefore likely attracted slightly younger informal caregivers and caregivers who had already sought information and support on the topic, which is also reflected in higher scale scores on the resilience than on the burden scales. Moreover, the questionnaire was developed for use in counselling of informal caregivers, which was not the context of this study. In subsequent studies, it would be valuable to validate the questionnaire within this particular setting to further refine the questionnaire.

Overall, this study provided evidence supporting the psychometric quality of the ResQ-Care-Dem. The ResQ-Care-Dem is a concise yet comprehensive instrument for measuring burden and resilience factors in informal caregivers of people with dementia. It was developed for use in the context of counseling and should be further validated in that setting as the next step in its development.

ResQ-Care

Resilience and Strain Questionnaire in Caregivers

ResQ-Care-Dem

Resilience and Strain Questionnaire in Caregivers of People with Dementia

ZBI-7

Zarit Burden Interview (brief 7-item version)

GAIN

GAin in Alzheimer Care INstrument

CSES-8

Caregiver Self-Efficacy Scale

QCPR

Caregiver-Patient Relationship Questionnaire

Ethics approval and consent to participate

Ethical approval has been obtained from the Ethical Committee of the University Medicine Greifswald (Registry number BB154/22). Participation in the study was voluntary. Participants independently accessed the website with the online questionnaire, which was promoted through the German Alzheimer's Society (Deutsche Alzheimer Gesellschaft e. V.) and social media. At the beginning of the online questionnaire, participants were informed that data collection would be anonymous, participation in the study was voluntary, and they could withdraw at any time.

Availability of data and materials

The dataset analysed during the current study is available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

The study was funded by the Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung; BMBF). MB receives funding for her PhD studies from the Hans and Ilse Breuer Stiftung.

Authors' contributions

Conception of the current study: all authors

Analysis and interpretation of data: IB, RT

Drafting of the manuscript: IB

Critical revision of the manuscript: all authors

Acknowledgements

We sincerely thank the participants of the study.

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Table 1 is available in the Supplementary Files section.

No competing interests reported.

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Assessment of the Validity of the Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem)

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Version 1

Abstract

Background

Methods

Results

Conclusions

Background

The Resilience and Strain Questionnaire in Caregivers of People with Dementia (ResQ-Care-Dem)

The Present Study

Methods

Participants and Procedure

Measures

Resilience and Strain Questionnaire for Dementia Caregivers (ResQ-Care-Dem) (11, 12)

Further Caregiver Questionnaires for Investigating Convergent Validity

Data Analysis

Construct Validity: Factor Structure

Construct Validity: Convergent Validity

Reliability

Results

Construct Validity: Factor Structure

Construct Validity: Convergent Validity

Reliability

Discussion

Reliability and Factor Structure

Convergent Validity

Limitations

Conclusions

List Of Abbreviations

Declarations

Ethics approval and consent to participate

Availability of data and materials

Competing interests

Funding

Authors' contributions

Acknowledgements

References

Tables

Additional Declarations

Supplementary Files

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