The experiences and needs of unpaid family caregivers for persons living with dementia in rural settings: A qualitative systematic review

Abstract

Purpose

Unpaid family caregivers provide extensive support for community-dwelling persons living with dementia, impacting family caregivers’ health and wellbeing. Further, unpaid family caregiving in rural settings has additional challenges because of lower access to services. This systematic review examines qualitative evidence to summarize the experiences and needs of rural unpaid family caregivers of persons living with dementia.

Methods

CINAHL, SCOPUS, EMBASE, Web of Science, PsychINFO, ProQuest, and Medline were searched for articles investigating the experience and needs of rural family caregivers of persons living with dementia. Eligibility criteria were: 1) original qualitative research; 2) written in the English language; 3) focused on the perspectives of caregivers of community-dwelling persons with dementia; 4) focused on rural settings. Study findings were extracted from each article and a meta-aggregate process was used to synthesize the findings.

Findings

Of the 510 articles screened, 36 studies were included in this review. Studies were of moderate to high quality and produced 245 findings that were analyzed to produce three synthesized findings: 1) the challenge of dementia care; 2) rural limitations; 3) rural opportunities.

Conclusions

Rurality is perceived as a limitation for family caregivers in relation to the scope of services provided but can be perceived as a benefit when caregivers experience trustworthy and helpful social networks in rural settings. Implications for practice include establishing and empowering community groups to partner in the provision of care. Further research must be conducted to better understand the strengths and limitations of rurality on caregiving.

Introduction

Dementia is an umbrella term for diseases characterized by the progressive deterioration of cognitive abilities and functional ability [1] that impact approximately 55 million people worldwide [2]. With 10 million new diagnoses every year, the global prevalence of dementia is projected to be 139 million people in 2050 [2]. While dementia is a key cause of dependency and disability for older adults [3], many persons with dementia live at home in community settings [4]. In Canada, for example, 61% of older persons with a dementia diagnosis live outside of institutional facilities (i.e., long-term care) [5]. While many of these individuals have mild or moderate dementias and low-care needs, some have complex care needs which can result in heavy caregiver burden. Canadian data show that 20% of community-dwelling persons with dementia have severe cognitive impairment, 25% exhibit responsive behaviours, 25% show signs of depression, and 28% require extensive assistance or are completely dependent on others for activities of daily living tasks like dressing and eating [5].

Unpaid family caregivers provide extensive support to community-dwelling people living with dementia. For example, they provide essential tasks such as supervision for persons with dementia and assistance with their activities of daily living. This care would account for over 40% of the total cost of dementia care if family caregivers were financially compensated for their work [6]. While most people living with dementia prefer to live at home, many are transferred to institutions when the care burden becomes too great for family caregivers [7].

While unpaid family caregivers recognize and report positive impacts of their caregiving [8], the demands of this care can negatively impact them by decreasing their overall psychological wellbeing and overall health [9], increasing health care use [9], and increasing chronic stress [4], social isolation and depression [10]. A recent systematic review [11] of family caregiver needs highlighted that they have specific needs (e.g., information, formal and informal support needs) related to the management of persons with dementia and also related to their own personal lives (e.g., helping to manage their own physical and psychological health) [11].

It is important to note that the geographical location where persons living with dementia and their caregivers reside influences their experiences and needs [12]. While definitions of rurality vary, most are based on population size or distance from services [12,13]. While rural unpaid family caregivers provide more hours of caregiving per week than their urban counterparts [14], it is unclear whether this is due to the inaccessibility or limited availability of formal services, the lack of other family and/or social support in rural settings, isolation exacerbated by geography and/or demographics, or some combination of these factors [12,15]. While family caregiver burden has been reported as being no different in rural areas than in urban areas, this may be because rural family caregivers have adapted to a lack of services by relying on informal supports [16]. Previous reviews on unpaid family caregiving in rural areas have not focussed on dementia care [13] or the qualitative experience of these caregivers [13,17].

New knowledge is needed to address gaps in dementia care literature, including the paucity of information on the experiences of family caregivers in rural communities, as well as their supportive care needs. Understanding how rurality influences family caregiving is necessary so family caregivers can be better supported, and family members can, in turn, better support persons living with dementia to live in their community settings as long as possible.

Accordingly, a systematic review was undertaken to address these gaps. A qualitative review was required to synthesize data across previous studies which represent the experiences of family caregivers in their own words. Thus, we conducted a systematic review of qualitative studies to summarize the experiences and needs of unpaid family caregivers living in rural settings while caring for persons living with dementia. Our overall question was “What are the experiences and needs of unpaid family caregivers of persons living with dementia in rural settings”? This review is intended to increase understanding of the family caregiver experience for health system leaders and health care providers who distribute resources to rural areas, as well as for organizations providing dementia education to families and communities. We also aim for this review to encourage further research to contribute to an expansive understanding of the experiences and needs of family caregivers in rural settings.

Methods

A review protocol was registered and published with the PROSPERO database (ID: CRD42020163912). The PICo (population, phenomenon of interest, context) framework [18] was used to guide the development of this qualitative review. Accordingly, we focused on to the population of interest (family caregivers for persons living with dementia), the phenomenon of interest (experience and needs in relation to caregiver burden and stress and interactions with informal and formal care systems), and the context (rural setting). The Joanna Briggs Institute (JBI) method for qualitative systematic reviews was followed and a meta-aggregation method was used to collect and analyze the data [19]. Meta-aggregation is rooted in pragmatism and aims to examine qualitative evidence (e.g., experiences and meanings) and produce results in the form of generalizable statements applicable to policy or practice [19]. According to Lockwood et al. (2015), meta-aggregative reviews feature a defined objective or question, detailed inclusion and exclusion criteria, a comprehensive search strategy, quality appraisal of the included studies, analysis of data extracted, presentation and synthesis of findings, and transparency in the approach taken.

All authors participated in designing this review. The search strategy was designed in consultation with a university librarian. Three authors conducted the literature search, article selection, quality appraisal, data extraction, and synthesis of the data. An initial review took place from December 2019 to September 2020, but writing the review was paused due to the slowing of research activities during the COVID-19 pandemic. As a result, a second search was conducted in Feb 2022 to capture and add new literature. All authors provided feedback on the synthesis and were involved in writing the resulting report.

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].

Results

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).

[Figure omitted. See PDF.]

[Figure omitted. See PDF.]

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.

[Figure omitted. See PDF.]

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.

Discussion

Given the growing incidence of dementia in rural and urban settings, it is important to understand how rurality affects the experiences and needs of caregivers of persons living with dementia in rural communities u. This systematic review of qualitative research uniquely summarizes the experiences and needs of rural family caregivers of persons living with dementia. A meta-aggregate approach was used to establish the synthesized results via coding and categorizing each finding from all included studies and then synthesizing the categories.

These synthesized findings provide new knowledge about unpaid family caregivers’ perspectives relating to the limitations and opportunities of living in rural areas while providing care for persons living with dementia. The findings reveal the challenges posed by dementia from the perspectives of caregivers as well as ways in which rural settings may pose limitations and/or provide opportunities when caring for community-dwelling persons living with dementia.

Of note is the importance of relationships to unpaid family caregivers in rural settings. On one hand, caregivers described this setting as limiting due to experiences of stigma yet, on the other hand, the rural setting also benefited caregivers when they experienced trustworthy and helpful relationships in close-knit communities. The importance of addressing stigma in rural settings is documented by others [56,57]. This present review both supports and enriches these findings by demonstrating that unpaid family caregivers may experience stigma in rural communities while, at the same time, often appreciate and rely on close-knit rural relationships. These important relationships are built on small social networks that can help to foster feelings of comfort and safety in rural areas. They also provide crucial opportunities for persons living with dementia to participate in meaningful activities while being supervised by others, thus providing a form of informal respite for unpaid family caregivers when formal respite services may not be available. This is significant in that trustworthy and helpful relationships in rural communities may be protective for unpaid family caregivers. While rural living contributes to challenges for caregivers, this review also captures the experience of rural living as an asset due to the existing social networks in these settings.

This review has implications for health systems and organizations. If unpaid family caregivers experience their communities to be potential assets in the provision of dementia care, health systems and health organizations could engage and empower existing social networks in rural communities to reduce dementia-related stigma and to co-produce dementia care with community partners. This co-production of care may be facilitated by integrated community care, an approach to care which values the role of the informal care sector, including family caregivers [58]. Intersectoral partners have a role in linking dementia education to communities, increasing access to technology in rural areas through better infrastructure, increasing funding for community-driven programs, and developing local and regional policies to increase community involvement in care.

Implications for research include the need to further investigate both the positive and the negative impacts of rural life on unpaid family caregiving, including identifying outcomes most important to caregivers in rural settings and examining factors that can improve outcomes. Investigating these outcomes and factors will facilitate the development of needed interventions in rural contexts. Methodologically, research using a community-based research approach [59] will build capacity in rural settings for unpaid family caregivers and their communities to direct research projects to best meet their needs and to involve local and regional governments in improving outcomes for caregivers in rural settings.

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.

Conclusion

This meta-aggregate analysis of qualitative studies describes the experience and needs of rural unpaid family caregivers for persons living with dementia. We have identified three synthesized findings. The first synthesized finding describes the challenges posed by dementia for caregivers, the second describes how caregiving is limited in rural settings, and the third describes the opportunities experienced by family caregivers due to their rural settings. We suggest healthcare systems build on the strengths of rural areas and work with communities to provide dementia care. We also call for future research to utilize community-based approaches to identify outcomes important to rural caregivers.

Supporting information

S1 Checklist. PRISMA 2009 checklist.

https://doi.org/10.1371/journal.pone.0286548.s001

(DOC)

Acknowledgments

Victor Froese, PhD, Library Director at Canadian Mennonite University, aided in the search strategy design for this review.

Citation: Campbell-Enns HJ, Bornstein S, Hutchings VMM, Janzen M, Kampen M, O’Brien K, et al. (2023) The experiences and needs of unpaid family caregivers for persons living with dementia in rural settings: A qualitative systematic review. PLoS ONE 18(6): e0286548. https://doi.org/10.1371/journal.pone.0286548

About the Authors:

Heather J. Campbell-Enns

Roles: Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing – original draft, Writing – review & editing

E-mail: [email protected]

Affiliation: Department of Psychology, Canadian Mennonite University, Winnipeg, Manitoba, Canada

ORICD: https://orcid.org/0000-0002-9920-5254

Stephen Bornstein

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliations: Department of Political Science, Memorial University, St. John’s, Newfoundland, Canada, Faculty of Medicine, Memorial University, St. John’s, Newfoundland, Canada

Veronica M. M. Hutchings

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliation: Aging Research Centre-NL, Grenfell Campus, Memorial University, Corner Brook, Newfoundland and Labrador, St. John’s, Canada

Maya Janzen

Roles: Data curation, Formal analysis, Investigation, Writing – review & editing

¶‡ These authors also contributed equally to this work.

Affiliation: School of Public Policy and Administration, Carleton University, Ottawa, Ontario, Canada

Melanie Kampen

Roles: Data curation, Formal analysis, Investigation, Writing – review & editing

¶‡ These authors also contributed equally to this work.

Affiliation: Centre for Transnational Mennonite Studies, University of Winnipeg, Winnipeg, Manitoba, Canada

Kelli O’Brien

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliations: St. Joseph’s Care Group, Thunder Bay, Ontario, Canada, Western Health, Corner Brook, Newfoundland and Labrador, Canada

Kendra L. Rieger

Roles: Methodology, Writing – original draft, Writing – review & editing

Affiliation: School of Nursing, Trinity Western University, Langley, British Columbia, Canada

Tara Stewart

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliation: Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada

Benjamin Rich Zendel

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliations: Faculty of Medicine, Memorial University, St. John’s, Newfoundland, Canada, Aging Research Centre-NL, Grenfell Campus, Memorial University, Corner Brook, Newfoundland and Labrador, St. John’s, Canada

Malcolm B. Doupe

Contributed equally to this work with: Stephen Bornstein, Veronica M. M. Hutchings, Kelli O’Brien, Tara Stewart, Benjamin Rich Zendel, Malcolm B. Doupe

Roles: Conceptualization, Funding acquisition, Writing – original draft, Writing – review & editing

Affiliation: Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada

References

1. Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organization; 2017.

2. Dementia [Internet]. World Health Organ. 2021 [cited 2022 Feb 17]. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia.

3. Prince M, Albanese E, Guerchet M, et al. Dementia and risk reduction: an analysis of protective and modifiable risk factors [Internet]. London, UK: Alzheimer’s Disease International; 2014 [cited 2022 Feb 17]. Available from: https://www.alzint.org/u/WorldAlzheimerReport2014.pdf.

4. Zhou Y , O’Hara A, Ishado E, et al. Developing a New Behavioral Framework for Dementia Care Partner Resilience: A Mixed Research Synthesis. The Gerontologist. 2020;gnaa218.

5. Dementia in Canada: Summary [Internet]. Can. Inst. Health Inf. [cited 2022 Feb 17]. Available from: https://www.cihi.ca/en/dementia-in-canada/dementia-in-canada-summary.

6. Wimo A, Guerchet M, Ali G-C, et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement J Alzheimers Assoc. 2017;13:1–7. pmid:27583652

7. Afram B, Stephan A, Verbeek H, et al. Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries. J Am Med Dir Assoc. 2014;15:108–116. pmid:24238605

8. Cheng S-T, Mak EPM, Lau RWL, et al. Voices of Alzheimer Caregivers on Positive Aspects of Caregiving. The Gerontologist. 2016;56:451–460. pmid:25614608

9. Bremer P, Cabrera E, Leino-Kilpi H, et al. Informal dementia care: Consequences for caregivers’ health and health care use in 8 European countries. Health Policy Amst Neth. 2015;119:1459–1471. pmid:26518906

10. Bass DM, Judge KS, Snow AL, et al. Negative Caregiving Effects Among Caregivers of Veterans With Dementia. Am J Geriatr Psychiatry. 2012;20:239–247. pmid:22251867

11. McCabe M, You E, Tatangelo G. Hearing Their Voice: A Systematic Review of Dementia Family Caregivers’ Needs. The Gerontologist. 2016;56:e70–e88. pmid:27102056

12. O’Connell ME, Germaine N, Burton R, et al. Degree of Rurality is not Related to Dementia Caregiver Distress, Burden, and Coping in a Predominantly Rural Sample. J Appl Gerontol. 2013;32:1015–1029. pmid:25474826

13. Goins RT, Spencer SM, Byrd JC. Research on Rural Caregiving: A Literature Review. J Appl Gerontol. 2009;28:139–170.

14. Cohen SA, Ahmed N, Brown MJ, et al. Rural-urban differences in informal caregiving and health-related quality of life. J Rural Health. 2022;38:442–456. pmid:33956360

15. Stewart NJ, Morgan DG, Karunanayake CP, et al. Rural Caregivers for a Family Member With Dementia: Models of Burden and Distress Differ for Women and Men. J Appl Gerontol. 2016;35:150–178. pmid:24652927

16. Byrd J, Spencer SM, Goins RT. Differences in Caregiving: Does Residence Matter? J Appl Gerontol. 2011;30:407–421.

17. Morgan D, Innes A, Kostineuk J. Dementia care in rural and remote settings: A systematic review of informal/family caregiving. Maturitas. 2011;68:34–46. pmid:21093996

18. Stern C, Jordan Z, McArthur A. Developing the review question and inclusion criteria: The first steps in conducting a systematic review. Am J Nurs. 2014;114:53–56.

19. Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc. 2015;13:179–187. pmid:26262565

20. Agyeman N, Guerchet M, Nyame S, et al. “When someone becomes old then every part of the body too becomes old”: Experiences of living with dementia in Kintampo, rural Ghana. Transcult Psychiatry. 2019;56:895–917. pmid:31046632

21. Arai Y, Sugiura M, Miura H, et al. Undue concern for others opinions deters caregivers of impaired elderly from using public services in rural Japan. Int J Geriatr Psychiatry. 2000;15:961–968. pmid:11044879

22. Blackstock KL, Innes A, Cox S, et al. Living with dementia in rural and remote Scotland: Diverse experiences of people with dementia and their carers. J Rural Stud. 2006;22:161–176.

23. Branger C, Burton R, O’Connell ME, et al. Coping with cognitive impairment and dementia: Rural caregivers’ perspectives. Dementia. 2016;15:814–831. pmid:24951255

24. Cox T, Hoang H, Goldberg LR, et al. Aboriginal community understandings of dementia and responses to dementia care. Public Health. 2019;172:15–21. pmid:31153045

25. Di Gregorio D, Ferguson S, Wiersma E. From beginning to end: perspectives of the dementia journey in northern Ontario. Can J Aging Rev Can Vieil. 2015;34:100–112. pmid:25631706

26. Duggleby W, Williams A, Wright K, et al. Renewing everyday hope: the hope experience of family caregivers of persons with dementia. Issues Ment Health Nurs. 2009;30:514–521. pmid:19591026

27. Ehrlich K, Emami A, Heikkilä K. The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: a qualitative study. Int J Qual Stud Health Well-Being. 2017;12:1275107. pmid:28452593

28. Forbes D, Blake C, Thiessen E, et al. Dementia Care Knowledge Sharing within a First Nations Community. Can J Aging Rev Can Vieil. 2013;32:360–374. pmid:24112288

29. Forbes DA, Finkelstein S, Blake CM, et al. Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: an interpretive descriptive study. Rural Remote Health. 2012;12:2201. pmid:23176308

30. Forbes DA, Markle-Reid M, Hawranik P, et al. Availability and acceptability of Canadian home and community-based services: perspectives of family caregivers of persons with dementia. Home Health Care Serv Q. 2008;27:75–99. pmid:18928206

31. Gibson A, Holmes SD, Fields NL, et al. Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services. J Gerontol Soc Work. 2019;62:630–648. pmid:31250733

32. Gray-Vickrey M. The lived experience of caring for a spouse with Alzheimer’s Disease: An investigation of rural and urban caregivers. [Buffalo, NY]: University of Buffalo; 1993.

33. Gurayah T. Caregiving for people with dementia in a rural context in South Africa: research. South Afr Fam Pract. 2015;57:1–4.

34. Herron RV, Rosenberg MW. “Not there yet”: Examining community support from the perspective of people with dementia and their partners in care. Soc Sci Med 1982. 2017;173:81–87. pmid:27930919

35. Herron RV, Rosenberg MW. Dementia in rural settings: examining the experiences of former partners in care. Ageing Soc. 2019;39:340–357.

36. Herron RV, Rosenberg MW, Skinner MW. The dynamics of voluntarism in rural dementia care. Health Place. 2016;41:34–41. pmid:27522270

37. Herron RV, Skinner MW. The emotional overlay: older person and carer perspectives on negotiating aging and care in rural Ontario. Soc Sci Med 1982. 2013;91:186–193. pmid:23102752

38. Hughes T, Tyler K, Danner D, et al. African American caregivers: An exploration of pathways and barriers to a diagnosis of Alzheimer’s disease for a family member with dementia. Dementia. 2009;8:95–116.

39. Innes A, Blackstock K, Mason A, et al. Dementia care provision in rural Scotland: service users’ and carers’ experiences. Health Soc Care Community. 2005;13:354–365. pmid:15969707

40. Innes A, Szymczynska P, Stark C. Dementia diagnosis and post-diagnostic support in Scottish rural communities: experiences of people with dementia and their families. Dement Lond Engl. 2014;13:233–247. pmid:24599816

41. Larsen LS, Normann HK, Hamran T. Processes of user participation among formal and family caregivers in home-based care for persons with dementia. Dement Lond Engl. 2017;16:158–177. pmid:25941046

42. Lilly MB, Robinson CA, Holtzman S, et al. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health Soc Care Community. 2012;20:103–112. pmid:21851447

43. Mattos MK, Burke LE, Baernholdt M, et al. Perceived Social Determinants of Health Among Older, Rural-Dwelling Adults with Early-Stage Cognitive Impairment. Dement Lond Engl. 2019;18:920–935. pmid:28361578

44. Morgan DG, Semchuk KM, Stewart NJ, et al. Rural families caring for a relative with dementia: barriers to use of formal services. Soc Sci Med 1982. 2002;55:1129–1142. pmid:12365526

45. Orpin P, Stirling C, Hetherington S, et al. Rural dementia carers: formal and informal sources of support. Ageing Soc. 2014;34:185–208. pmid:24453384

46. Prorok JC, Hussain M, Horgan S, et al. “I shouldn’t have had to push and fight”: health care experiences of persons with dementia and their caregivers in primary care. Aging Ment Health. 2017;21:797–804. pmid:26982159

47. Sanders S. Experiences of rural male caregivers of older adults with their informal support networks. J Gerontol Soc Work. 2007;49:97–115. pmid:17953064

48. Sanders S, McFarland P. Perceptions of caregiving role by son’s caring for a parent with Alzheimer’s disease: A qualitative study. J Gerontol Soc Work. 2002;37:61–76.

49. Sanders S, Power J. Roles, responsibilities, and relationships among older husbands caring for wives with progressive dementia and other chronic conditions. Health Soc Work. 2009;34:41–51. pmid:19281101

50. Smith AL, Lauret R, Peery A, et al. Caregiver Needs. Clin Gerontol. 2001;24:3–26.

51. Smith K, Flicker L, Shadforth G, et al. “Gotta be sit down and worked out together”: views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians. Rural Remote Health. 2011;11:1650. pmid:21688948

52. Vellone E, Piras G, Venturini G, et al. The experience of quality of life for caregivers of people with Alzheimer’s disease living in Sardinia, Italy. J Transcult Nurs Off J Transcult Nurs Soc. 2012;23:46–55. pmid:21807960

53. Wiersma EC, Denton A. From social network to safety net: Dementia-friendly communities in rural northern Ontario. Dement Lond Engl. 2016;15:51–68. pmid:24381217

54. Musyimi CW, Ndetei DM, Evans-Lacko S, et al. Perceptions and experiences of dementia and its care in rural Kenya. Dementia. 2021;20:2802–2819. pmid:33928810

55. Nguyen H, Nguyen T, Tran D, et al. “It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam. PloS One. 2021;16:e0259788. pmid:34843513

56. Bacsu J, Novik N, Johnson S, et al. Addressing the needs of rural and remote people in a national dementia strategy for Canada. Can J Public Health Rev Can Santé Publique. 2019;110:752–755.

57. Szymczynska P, Innes A, Mason A, et al. A Review of Diagnostic Process and Postdiagnostic Support for People With Dementia in Rural Areas. J Prim Care Community Health. 2011;2:262–276. pmid:23804844

58. Vandenbroeck P, Braes T. Integrated Community Care 4All Seven Principles for Care [Internet]. Brussels, Belgium: TransForm: the Trans-national Forum for Integreated Community Care; 2020 [cited 2022 Mar 22]. p. 1–20. Available from: https://transform-integratedcommunitycare.com/wp-content/uploads/2021/03/ICC4All-Strategy_EN.pdf.

59. Janzen R, Ochocka J, Stobbe A. Towards a Theory of Change for Community-based Research Projects. Engaged Sch J Community-Engaged Res Teach Learn. 2016;2:44–64.