Long-Distance Family Caregivers’ Perceptions of Burden and Strain Scales Developed for Proximate Family Caregivers

Abstract

There is a growing number of long-distance family caregivers (LDCs) of older adults with dementia, yet burden and strain scales have not been designed to consider their unique needs, challenges, and experiences. This report draws on open-ended responses from 40 LDCs in a pilot intervention study regarding the Zarit Burden Interview-12 (ZBI-12) and Pearlin’s Family Conflict, Job-Caregiving Conflict, and Role Captivity scales. Participants provided insights on the relevance of these scales to the LDC experience and whether they encountered challenges in responding to specific items. Some participants remarked that lower hands-on, everyday caregiving engagement and geographic distance made questions difficult to answer or irrelevant to their experiences. Across scales, most participants stated that the questions captured their experiences as LDCs. Findings suggest that these scales developed for the use of proximate caregivers may be appropriate to use with LDCs, though results merit confirmation in larger studies with more representative samples.

Introduction

In the United States, over 11 million family caregivers (CGs) provide the bulk of care for to an individual with dementia (Alzheimer’s Association, 2024). Long-distance caregivers (LDCs) – family CGs s who live at least one hour away from their care recipient (CR; AARP/NAC, 2020; Thompsell & Lovestone, 2002) – are a significant and growing population of caregivers. Estimates suggest that 1.7 million family caregivers are managing care from a distance (Alzheimer’s Association, 2013;). LDCs engage in a wide variety of caregiving tasks including finding and managing adequate healthcare for their CR, and resolving unexpected issues (e.g., coordinating medical visits, ensuring new medication adherence) all from a distance (Cagle & Munn, 2012; Edwards, 2014; Hicks et al., 2018). Plus, LDCs’ frequent travel to visit their CR can be physically, emotionally, and financially draining (Hicks et al., 2018; Lewis, 2008). Research suggests that when compared to proximate caregivers, although LDCs report less physical strain, they experience similar or higher levels of emotional distress (Chou et al., 2001; Thompsell & Lovestone, 2002), and more often face family conflicts regarding care management (Bledsoe et al., 2010; Koerin &. Harrigan, 2003).

Although a substantial amount of research continues to address the challenges that family caregivers undergo when supporting an individual with dementia, the vast majority of this work has focused on geographically close caregivers (Bledsoe et al., 2010; Cagle & Munn, 2012). An emerging literature base has shown that LDCs experience unique difficulties such as communicating with health care providers (Falzarano et al., 2020), disruptions in employment (Falzarano et al., 2022), and significant caregiver burden (Cimarolli et al., 2018). The limited research conducted with LDCs has relied on existing caregiver burden and strain scales developed and psychometrically validated predominantly with proximate caregivers, but do not capture the unique challenges faced by LDCs face. It is unknown if these widely used scales can adequately and fully capture the unique burdens and strains that LDCs face. Hence, it is critical to examine the suitability of such scales to ensure their appropriateness for the use with LDCs of individuals with dementia. Therefore, the purpose of this study was to ascertain if LDCs perceived items/questions of commonly used caregiver burden and strain scales as challenging to answer and whether scales are perceived as relevant to their experiences as LDCs.

Methods

Participant Recruitment

Participants were part of a pilot study focused on developing and feasibility testing a psychoeducational intervention for LDCs (Cimarolli et al., 2025). Recruitment occurred via study recruitment flyer distribution to various clinical trial websites, newsletters, and non-medical home care provider organizations.

Procedures and Measures

Before engaging in the intervention, participants completed a pre-intervention baseline interview via Zoom, which included several caregiver burden and strain measures. The scales administered were the 12-item Zarit Burden Interview (ZBI-12; Cronbach’s Alpha = 0.79); and Pearlin’s Family Conflict (FCS; Cronbach’s Alpha = 0.83); Job Caregiving Conflict (JCS; Cronbach’s Alpha = 0.67); and Role Captivity Scales (RCS; Pearlin et al., 1990; Cronbach’s Alpha = 0.82). After each caregiver burden and strain scale was administered, two open-ended questions were asked in relation to each scale: “Did you find any of the previous questions about how you may feel when caring for your [care recipient] challenging to answer? If yes, which and why?”, and “How well do you feel these questions describe your thoughts and feelings as a caregiver?” All scale items and open-ended questions were administered by trained interviewers at baseline with no missing responses occurring.

Coding of Open-ended Responses

Upon completion of all 40 baseline interviews, two members of the research team coded participants’ responses - REC, a PhD candidate trained in mixed methods and VC, a health services PhD with expertise on the needs of LDCs. Both had extensive coding experience and maintained an audit trail of analytic decisions (Lincoln & Guba, 1985). Codes were developed inductively by identifying expressed narrative elements across participants.

Initially, the two coders identified and compiled a list of codes representing narrative concepts from the first 10 participants’ responses. Through discussion and iterative refinement, overlapping or redundant codes were merged to create a final codebook. To assess interrater reliability, the same two coders independently applied the final codebook to the next 10 participants’ responses for each scale and met to calculate percent agreement, which was 91%. Discrepancies were resolved through discussion. One coder then applied the established codebook to the remaining responses. Coded data were analyzed descriptively as categorical variables to examine the prevalence of certain narrative concepts within and across scales. Illustrative quotes were used to provide context and highlight participants’ perceptions.

Results

Participants

The majority of the 40 LDCs were women (90%) and their average age was 51 years (SD = 11.62; Range = 28–77). Approximately 32% of participants were non-White. Most participants were married or had a partner (73%). The sample was well-educated, with 95% of participants having graduated college or attended graduate school and most participants were employed full time (57%). Table 1 depicts the full socio-demographic characteristics of the sample.

Table 1.

Participant Sociodemographic Characteristics (N=40)

Variables	M (SD; Range)1/% (n)2
Age	51.33 (11.62; 28–77)
Female	90.0 (36)
Marital status
Married/partnered	72.5 (29)
Separated/divorced	7.5 (3)
Never married	20.0 (8)
Race/ethnicity
Non-Hispanic White	67.5 (27)
Hispanic	20.0 (8)
Non-Hispanic Asian	7.5 (3)
More than one race	2.5 (1)
Non-Hispanic Black	2.5 (1)
Education
Some college	5.0 (2)
College graduate	47.5 (19)
Graduate school	47.5 (19)
Employment status
Working full-time	57.5 (23)
Working part-time	25.0 (10)
Unemployed	2.5 (1)
Retired	12.5 (5)
Homemaker	2.5 (1)

Notes.

¹For continuous variables

²For categorical variables

Participants’ Evaluation of Burden and Strain Scales

Across scales, participants’ responses to the open-ended follow up questions fell into several broad categories, including ‘questions were not challenging,’ ‘questions were challenging,’ ‘questions described my thoughts and feelings well in general,’ ‘not all questions are relevant to long-distance caregivers,’ ‘not all questions are relevant because of care recipient’s cognitive status.’ Table 2 reports the frequencies of each code applied to the participants’ responses, organized by scale, and Table 3 includes additional exemplary participant quotes. Quantification of the narrative data was used preliminarily to assist in understanding the frequencies of the participant narratives that fell within each category, and to understand the variations between scales. Narrative findings are described within each of the categories below.

Table 2.

Frequencies of Codes for Baseline Open-Ended Responses (N=40)

Codes	ZBI-12	FCS	JCS	RCS
	% (n)	% (n)	% (n)	% (n)
Perceptions of questions being challenging
Questions were not challenging	53 (21)	85 (34)	63 (25)	58 (23)
Questions were challenging	25 (10)	3 (1)	8 (3)	30 (12)
Relevance of questions to long-distance caregiving experience
Questions described my thoughts and feelings well in general	63 (25)	75 (30)	53 (21)	58 (23)
Not all questions are relevant to long-distance caregivers	25 (10)	3 (1)	13 (5)	18 (7)
Not all questions are relevant because of care recipient’s cognitive status	0 (0)	5 (2)	0 (0)	0 (0)

Notes. Code families’ titles are in bold and codes are listed below in regular font. ZBI-12 = 12-item Zarit Burden Interview; FCS = Pearlin’s Family Conflict Scale; JCS = Pearlin’s Job Caregiving Conflict Scale; RCS = Pearlin’s Role Captivity Scale (Pearlin et al., 1990).

Table 3.

Additional Exemplar Quotes by Scale

	Additional Exemplar Quotes
Perceptions of questions being challenging
Zarit Burden Interview – 12	“Those last few questions are very hard and sobering. The toughest part is knowing that it will never be enough, and she will never get better.” “Where they present a little bit of challenge is that because my father is very involved in this and less cooperative. He is the one that causes me more stress than my mom does.” “They questions were good, but the answers really depend on when there is a crisis and that can vary a lot.”
Family Conflict Scale	“It’s a little hard because I don’t necessarily agree with people’s lack of involvement. Like people not even visiting or calling. I just don’t agree with how other family members are doing this.”
Job Caregiving Conflict	“Not challenging exactly, but it can be hard to tease out the causes of tiredness.” “If I were to say what would be my concern with work and caregiving is having enough flexibility with work. I think that’s important especially with long-distance caregiving. How much time I can take off and how understanding they are.”
Role Captivity Scale	“Challenging because they are very emotional questions and it’s hard to answer them.” “Challenging yes, because I have to be honest about something that feels bad to say.”
Relevance of questions to long-distance caregiving experience
Zarit Burden Interview – 12	“There were a few that felt like they were for caring in person, like the privacy one, that didn’t feel appropriate because I’m long-distance.” “Sometimes I feel like I have two different lives - my life when I’m home and my life when I’m there. I don’t think he impacts my privacy when I’m home, but he does when I’m there.” “They should be reworked for distance caregivers. I think you could ask about guilt from not being right there. Challenges navigating between the different involved parties (aide, care recipient, other caregivers).”
Family Conflict Scale	“This was a useful set of questions, definitely captures where we’ve been. One of my sisters is convinced that my mom can do more than I think she can do. Maybe she’s right, I don’t know. We are all varying degrees of optimism.”
Job Caregiving Conflict	“Because of my work situation, working from home, it’s flexible so I didn’t think it necessarily applied to me. I can deal with these things working from home and being salaried.” “I feel like I’m so far removed from the everyday experience that I’m able to take care of business. It’s just when things come up that they become hard, but mostly the day-to-day is okay since I’m at a distance.”
Role Captivity Scale	“Again, these are not really geared to long-distance. The reason I hesitated on the one about feeling trapped, it’s that I don’t feel trapped emotionally, but it leaves enough ambiguity that I could say somewhat.” “If I were living with them 24/7 I would be answering these questions differently. When I’m there, sometimes I feel overwhelmed but because I am long-distance, I feel like these things don’t apply as much.”

Perceived Challenges with Answering Questions

Across scales, most of the forty participants did not characterize the questions as challenging. The number of participants who explicitly described the questions as ‘challenging’ was particularly notable for the ZBI-12 (n=10). Participants who described the questions as ‘challenging’ did so for a variety of reasons. The most common reasons participants described questions on the ZBI-12 as ‘at least somewhat challenging’ included negative emotional reactivity to the nature of the questions (e.g., questions were “hard and sobering”), the confounding nature of the involvement of multiple caregivers (e.g., other involved family are the primary challenge), and the perceived irrelevance of some questions to their long-distance caregiving. One participant commented on the ZBI-12, “I guess I felt like they were a little challenging because my experience when I am staying with her is so different than when I’m at home” Another participant noted that, “Yes, they were [challenging to answer]. I think it’s primarily that there is distance, there is a mother daughter relationship that is different than maybe others and we don’t always see eye to eye. There are other people that we have to manage into the care.”

Relevance to Long-Distance Caregiving Experiences

Regarding the relevance of questions to their experiences as long-distance caregivers, across scales most participants indicated that the questions described their thoughts and feelings as LDCs well. However, several scales included a number of participants who stated that not all questions within the scale were relevant to LDCs, including the ZBI-12 (n=10) and the RCS (n=7). The reported reasons for irrelevance of questions included the everyday, hands-on caregiving engagement being low and the geographic distance making the questions irrelevant (e.g., questions pertaining to maintaining privacy). For the ZBI-12, a participant said: “Not well, because most of them don’t seem very relevant from a distance. Most of the time it’s quiet, and there’s not a whole lot to do from a caregiving perspective. She has help right now. I think this is different when there is an acute situation.” Some participants referenced specific items. The question, “Do you feel that you don’t have as much privacy as you would like because of your relative?” was commonly cited as less applicable at a distance. For the RCS, one participant expressed that because everyday engagement was lower, many of the questions were not relevant to LDCs. “I think the questions might better suit a hands-on caregiver than a remote caregiver”. Another participant described the “how much do you feel trapped” item as ambiguous in the context of long-distance caregiving. “These are not really geared to long-distance. The reason I hesitated on the one about feeling trapped is that I don’t feel trapped emotionally, but it leaves enough ambiguity that I could say somewhat”. These brief item-level remarks suggest targets for future item revision.

Discussion

Despite the significant number of LDCs in the U.S., there is a lack of available measures that were specifically designed for assessing the burden and strains of LDCs. As research efforts on long-distance caregiving are expanding, it is critical to ensure that scales are being used to adequately capture the experiences of LDCs. The present study examined how LDCs perceived several commonly used caregiver measures of burden and strain developed for proximate caregivers to gauge how challenging they perceived them to be and their relevance to LDCs. Findings provide important insights about what aspects of the ZBI-12, FCS, JCS, and RCS that LDCs suggest may or may not be relevant to their experiences.

Largely, LDCs in this study did not find the scales’ questions to be challenging to answer. Among participants who described the questions as challenging, several within the sample interpreted the challenge as deriving from the emotional nature of the questions and did not immediately list LDC-specific reasons for the reported difficulty. For those who did note LDC-specific reasons for difficulty, most comments pertained to the ZBI-12, where participants shared issues unique to LDCs, such as geographic distance (e.g., being less strained while afar but more when visiting) or because of uncertainty with how the question should be interpreted (e.g., what does loss of privacy look like among LDCs).

LDCs also expressed that the questions described their thoughts and feelings well in general. However, several participants noted that not all questions were relevant to LDCs. This sentiment was most prevalent with ZBI-12, where participants shared that geographic distance made some questions challenging to answer or irrelevant (e.g. question pertaining to maintaining privacy from CR). Some participants acknowledged that although the questions presented across the scales were relevant, the scales themselves could be modified to better capture experiences. For example, because some LDCs must rely on local family members or friends for support (Bevan & Sparks, 2011), some participants suggested reframing questions within the ZBI-12 having to do with whether they are doing enough as caregivers and including more about the interpersonal dynamics of other involved caregivers. Several LDCs in this sample appreciated the opportunity to provide additional context to their responses during the open-ended questions following each scale, suggesting that without explanation the scale responses could be misleading.

This study has several important limitations. First, the brevity of the open-ended questions limited our ability to probe emerging ideas. Additionally, because these questions were embedded within a broader interview protocol, we were constrained in how deeply we could explore participants’ perceptions of the scales. Since the subgroups endorsing ‘questions were challenging’ and ‘not all questions were relevant’ were small, we could not conduct quantitative subgroup comparisons. However, future research with larger samples should test these patterns formally. This future work should also conduct systematic item-level interviewing with LDCs to determine where item content and wording may need adaptation. These preliminary findings suggest that there may be a need for tailored questions designed to capture the unique experiences of LDCs, who represent a growing subgroup among family caregivers.

What this paper adds

• Many of the long-distance caregivers (LDCs) of older adults with dementia in this sample reported that commonly used burden and strain scales items were not challenging to answer and were generally relevant to their experiences.

• Among those participants reporting limitations regarding the relevance of existing scales to their experiences as LDCs, geographic distance and less intense everyday hands-on engagement in caregiving were most frequently described as making some questions difficult to answer or irrelevant.

Application of study findings

• Findings can help guide future modifications and adaptations of scales such as the Zarit Burden Interview-12 for the use with LDCs to ensure that the unique burdens of LDCs are adequately and fully captured.