Eligibility criteria

To be included, studies must have been original qualitative research written in English and focused on the experiences and needs of unpaid family caregivers of persons living with dementia in rural communities. Mixed-methods studies with a qualitative component were accepted if the qualitative data could be extracted for this review. Several terms were broadly defined to capture as many pertinent studies as possible: 1) “family” was defined as anyone a person living with dementia would consider to be family; 2) “caregiver” was defined as an unpaid family carer; 3) “dementia” captured both Alzheimer’s Disease and any other type of dementia; and, 4) “rural” included studies using the terms rural or remote to describe their settings. As well, studies were included with representatives of both rural and urban caregivers only in cases where the rural caregiver perspective could be extracted from the article.

Studies were excluded from this review if they did not: 1) focus on the experiences or needs of unpaid family caregivers of community-dwelling persons living with dementia; 2) include quotations from caregivers to support their findings; or, 3) focus on rural settings. Articles were also excluded if: 4) the full paper could not be found; and 5) the paper was not original research.

Search

The following search strategy was developed in consultation with a university librarian, and the following terms were used consistently across the online databases: (dementia OR alzheimer* OR aging) AND (rural OR remote) AND (care* OR caregiver burden) AND (interview OR qualitative). Online databases were searched from their inception to December 2021, including CINAHL, SCOPUS, EMBASE, Web of Science, PsychINFO, ProQuest Dissertations & Theses, and MEDLINE. Google Scholar and Open Access Theses and Dissertations and other relevant websites were searched, as well as the reference lists of relevant articles and reviews.

Article selection

All titles and abstracts were screened by two independent reviewers to determine if they met the inclusion criteria. Full text versions of potentially relevant studies were retrieved and independently assessed by two reviewers to confirm their eligibility. Disagreements were resolved through discussion and, in the case of disagreement or uncertainty on article inclusion, a third reviewer was consulted. All eligible articles were assessed using the JBI Critical Appraisal Tool for Qualitative Research.

Data extraction

Authors developed a data extraction form to extract study details. The form was tested on three initial study articles and then revised as needed. Two authors extracted data independently and consolidated the data through discussion. If there was uncertainty, a third reviewer was involved. The form included study location, year of publication, purpose as stated by authors, methods, sample size, participant characteristics, setting, specific study findings, and an illustrative participant quotation for each study finding. The findings from each study were located and documented by examining the results sections of the included studies and were not derived through re-interpretation by this review.

Data analysis and synthesis

Data analysis software (ATLAS.ti) was utilized to support the comparison of the extracted findings (e.g., themes) in the meta-aggregative process. All extracted findings (e.g., themes) and representative quotations were coded independently for their meanings and compared by three authors. Extracted findings were also coded for whether they explicitly referred to experiences or needs related to rural settings. Extracted findings were assembled into categories based on similarity of concept meaning (multiple findings per category) and the categories were then synthesized (with multiple categories being represented in each synthesized finding). These synthesized findings are overall descriptions of a group of categories derived from combining findings and aim to be representative of the evidence being combined [19].

Study characteristics

The search strategy (Fig 1) retrieved 704 citations. After duplicates were removed, 510 articles were identified as potentially relevant to the objectives of the review. Titles and abstracts of the articles were examined, and 425 articles were excluded from the review because they did not meet the inclusion criteria. The full text of the remaining 85 articles were reviewed. After a full review, 49 further articles were excluded, and the remaining 36 articles were included in this review (Table 1) [20–53]. These 36 studies represented a total of 847 unpaid family caregiver participants (ranging from 3 to 166 participants). Thirty-four studies focused solely on rural caregivers and two studies included both rural and urban caregivers [32,38]. As reported in Table 1, studies were conducted by authors who were affiliated with institutions in Canada (n = 15), the United States (n = 7), Australia (n = 3), Scotland (n = 3), Norway (n = 1), Sweden (n = 1), South Africa (n = 1), Kenya (n = 1), Ghana (n = 1), and Japan (n = 1).

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Fig 1. Flow diagram of research process.

https://doi.org/10.1371/journal.pone.0286548.g001

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Table 1. Included studies and numbered findings.

https://doi.org/10.1371/journal.pone.0286548.t001

Study quality

The quality appraisal checklist consisted of 10 items, and, except for one low-quality article, all the studies were of moderate to good quality overall. No article included all 10 items (average = 7.1 of 10; range = 3 to 9 of 10) (Table 1). The most frequently excluded quality items were a statement locating the researcher culturally or theoretically (n = 35), the influence of the researcher on the research and vice-versa (n = 32), and a stated philosophical perspective and research methodology (n = 21).

We also report on whether and how rurality was defined. In half of the studies, the authors did not objectively define this term [21,24,26,28,30,31,33,38,41,46–52,54,55]. In the remaining studies, authors defined rurality by various criteria–geographic location [36,39,40], proximity to urban centres or distance to services [23,29,34,37,43,45], population density [27,42], by the agricultural or resource-based economy of the area [20,35], or the perceived rural identity of participants [34,36]. As well, several studies used a combination of the above factors in defining rurality; various studies utilized a combination of population density and proximity to urban centres [22,25,32,53], a combination of population density and type of economy [44], or a combination of geographic location, economic factors, and perceived rural identity [36].

Synthesized findings

Data extraction resulted in 245 study findings from the 36 included articles. Extracted findings were numbered to track their contributions to the synthesized findings (Table 1). After coding each extracted finding, codes were aggregated into 11 categories. These categories were 1) coping, 2) stress and emotions, 3) finances, 4) role/identity of caregiver, 5) noticing health changes, 6) family support, 7) getting help and/or adapting, 8) communication, 9) decision-making, 10) services provided and, 11) information and understanding. Then, through a process of reading and re-reading category contents, categories were then synthesized into three synthesized findings to describe the unpaid family caregiver experience, with two findings particular to the rural setting. Table 2 shows how categories contributed to synthesized findings by referring to extracted finding numbers. No extracted findings were omitted from the synthesis. The three synthesized findings are described below.

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Table 2. Finding numbers related to each synthesized finding and category.

https://doi.org/10.1371/journal.pone.0286548.t002

Synthesized finding 1: The challenge posed by dementia for rural caregivers

“The challenge posed by dementia” describes the difficult or demanding experiences related to being an unpaid family caregiver of a person with dementia, as perceived by participants living in rural areas. As participants did not explicitly link many of these experiences with providing unpaid care in rural settings, it is unknown if these experiences are related to, or exacerbated by, the rural context. Since this synthesized finding captures the overall experience of unpaid family caregiving, all 11 categories (Table 2) contributed to this synthesized finding.

First, unpaid family caregivers reported that seeking a dementia diagnosis was challenging. They met with healthcare providers who initially dismissed the possibility of a dementia diagnosis because the person with dementia was too young or because memory loss was an expected characteristic of older age [20,24,38,44,46,50,54]. Living with pre-diagnosed dementia was difficult for caregivers [25,29,38,40,54] and caregivers described the need for improved dementia information and education [20,23–26,29,32,38–40,42,46,48,50,51]. They also needed improved communication with and among healthcare providers to be better informed about dementia and the future course of the illness [28,40,42,46,50].

Second, unpaid family caregivers found formal healthcare services (e.g., home care) to be lacking, inflexible and/or uncoordinated [23,29,30,35,39–42,44–46,48,50,51]. As a result, caregivers were left to fill gaps in services by providing services themselves and/or by developing personal networks to help provide care [22,28,34–36,42,44,47]. To alleviate this burden, caregivers wished to have someone who could guide the process of facilitating connections among and across services and providers [40,46,51], especially when providing care became too burdensome for the caregiver to continue safely [41,42,44,48–50].

Third, unpaid family caregivers experienced negative emotions (e.g., sadness, anger) as a part of their caregiving and this was a source of stress [23,25,27–30,32,33,37–41,41,42,44–46,48–52,55]. While many caregivers found ways to cope with, or adapt to, these negative emotions by seeking support or taking time for self-care activities, participants often reported challenges with finding the support to alleviate their responsibilities and enable them to practice self care [23,28,30,32,42,43,46,49,52,55].

Synthesized finding 2: Rural limitations

“Rural limitations” describes the barriers or limitations experienced by unpaid family caregivers for persons living with dementia when providing care in rural settings. Six categories contributed to this synthesized finding (stress and emotions, role/identity of caregiver, family support, getting help and/or adapting, services provided, information and understanding).

First, several studies reported that caregivers of persons living with dementia in rural communities felt stigmatized in their community and that the challenges they experienced were not understood by community members [20,22,25,44,45,52,54]. A lack of community member education about dementia (e.g., defining dementia, understanding dementia symptoms, understanding the needs of caregivers) was a challenge which precipitated negative emotions for caregivers [24,25,29,45,54]. Where formal community-based programming for persons living with dementia and their caregivers existed (e.g., day programs, support groups), caregivers noted that they perceived the programming to be more suitable for women than for men (i.e., for both caregivers and persons living with dementia) [34,50].

Second, unpaid family caregivers reported that rural communities had changed due to population aging and the departure of family members for urban areas. As rural communities changed over time, caregivers hesitated to ask for support from remaining community members who had their own health concerns and limitations, as fewer family members were available to provide them with support in rural settings [32,35,43,47,55]. Some caregivers felt that governments did not have the will to provide better supports to help older people age in place in rural areas [37].

Third, unpaid family caregivers felt that the quality of health services in rural communities was inferior to that provided in urban communities. Distance to specialized services led to transportation challenges and excessive time away from home to travel long distances [32,39,40,51]. Where services were provided in their rural communities, caregivers noted a lack of specialized knowledge about dementia (e.g., by family physicians, respite workers, and home care workers who lacked dementia training) [31,48,55] or that, even when a provider had some dementia training, they may not have knowledge appropriate to the specific community and/or culture. For example, participants noted a lack of Indigenous workers in communities with large Indigenous populations [24,51]. As well, rural communities experienced a lack of and/or high turnover in home care and respite workers resulting in inflexible care schedules, inconsistent care providers, and a lack of respite for caregivers [29,30,39,42,44,51,55].

Synthesized finding 3: Rural opportunities

Study participants often described the benefits and opportunities available for persons living with dementia in rural communities and their unpaid family caregivers. Seven categories contributed to this synthesized finding (coping, stress and emotions, family support, getting help and/or adapting, communication, services provided, information and understanding).

Participants most often cited the strong personal networks in close-knit rural communities and how these affected them positively when caregiving for someone with dementia. These networks are not capable of providing specialized dementia services, but they involve trusting relationships and feelings of mutual responsibility based on the specific local environment. At times, rural environments were described as positive because of the beauty of the landscape [22], yet positive comments were more often associated with caregivers’ feelings of trusting others, being known by others in their close-knit communities, and having community members help supervise persons living with dementia in the community [22,27,31,45,53].

Even where dementia-specific care might not be ideal because of distance from services and local challenges [22], caregivers described the rural setting as a place where they have ties to others, even when rural populations are shrinking [22,45,53]. As a result, participants felt that rural communities provided them with a sense of safety and opportunity when caring for persons living with dementia. A rural network provided a safety net when there was a personal connection to someone who had healthcare knowledge (e.g., a retired nurse), leading caregivers to feel they had someone whom they could call on in a crisis [47].

Family caregivers also felt that rural settings provided opportunities for persons living with dementia. Persons living with dementia were able to link with people and places to participate in activities that provided continuity with their lives before diagnoses (e.g., repairing mechanical parts, gardening, being outdoors with others) [28,31,34]. This was reported as enjoyable and meaningful for persons living with dementia and was beneficial for caregivers because it provided a form of respite for caregivers.

Limitations

This review is limited in that the definition of rurality was inconsistent or lacking across studies reviewed, and we cannot know how differing conceptualizations of rurality may have impacted this review. Second, the included studies vary in quality which may have impacted our findings. Lastly, each finding is associated with the experiences and needs of caregivers of persons living with dementia in rural communities, yet we do not directly compare the experiences of rural and urban caregivers in this review. As such, we cannot claim these findings to be unique to rural caregivers, yet our meta-aggregate analysis demonstrates that rural caregivers attribute some of their unmet needs, as well as some of their supports, specifically to their rural contexts.