Background and objectives
People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature.
A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis.
All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature.
Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.
Citation: Elliot V, Morgan D, Kosteniuk J, Bayly M, Froehlich Chow A, Cammer A, et al. (2021) Palliative and end-of-life care for people living with dementia in rural areas: A scoping review. PLoS ONE 16(1): e0244976. https://doi.org/10.1371/journal.pone.0244976
Editor: Stephen D. Ginsberg, Nathan S Kline Institute, UNITED STATES
Received: July 1, 2020; Accepted: December 18, 2020; Published: January 14, 2021
Copyright: © 2021 Elliot et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the manuscript and its Supporting Information files.
Funding: Study funding was provided by the Canadian Consortium on Neurodegeneration in Aging (CCNA) and a Canadian Institutes of Health Research (CIHR) Foundation Grant to DGM (grant number 148444). The CCNA is supported by a grant from the Canadian Institutes of Health Research (CAN 137794) with funding from several partners including the Alzheimer Society of Canada, the Centre for Aging and Brain Health Innovation, and the Saskatchewan Health Research Foundation.
Competing interests: The authors have declared that no competing interests exist.
Dementia is caused by a group of diseases that are typically progressive in nature, affect cognitive abilities (such as memory and decision-making) and behaviors, and affect the ability to perform activities of daily life . Globally, it is estimated that over 50 million people are currently living with dementia . This number is projected to increase by approximately 10 million each year, reaching 152 million by the year 2050 . As a chronic, terminal disease, experiences, abilities, and needs vary across the different disease stages . The World Health Organization describes palliative and end-of-life care as essential in advanced, late- or end-stage dementia .
Although there are several terms related to care provided during the end of life (for example hospice care, end-of-life care, and palliative care), these terms are at times used collectively to represent care that is intended to better the quality of life and death for people dealing with a terminal illness . While palliative care and end-of-life care share common goals, most often palliative care can, and should, begin much earlier in the continuum of care than the end of life stage. In fact, advance planning for both palliative and end-of-life care can begin soon after diagnosis . For the purposes of this review, the terms palliative care and end-of-life care are used the way they were referred to in the literature cited.
The Worldwide Hospice Palliative Care Alliance and the World Health Organization recognize that the benefits of palliative care extend to individuals living with chronic and life-limiting, terminal conditions . However, there are many barriers to accessing palliative care for people with dementia such as misconceptions that dementia is not terminal, insufficient policy and resources, a lack of health professionals with training in palliative care and dementia, a deficit in advance directives regarding end-of-life care, and cultural and social beliefs related to death and dying [5–7]. It has been recognized that the palliative care needs of people with dementia are likely underestimated, under-assessed, and under-treated, on a global level . In addition, people living in rural or remote areas more often consist of older populations  and experience additional unique barriers to accessing care and services  compared to their urban counterparts [8,9].
The purpose of this review was to scope the literature pertaining to palliative and end-of-life care for people with dementia and their families who live in rural areas. Specifically, to comprehensively review and summarize the evidence regarding palliative and end-of-life care for people with dementia living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. The findings from this review contribute to existing knowledge on palliative/end-of-life care for people with dementia and their families while incorporating unique challenges or facilitators associated with living rurally.
The protocol used to conduct this scoping review was based on the methodological framework of Arksey and O'Malley , built on by Levac et al , and later revised and updated by the Joanna Briggs Institute [12,13]. The protocol was developed a priori and was not registered. The five-step framework  included the following: (i) identifying the research questions, (ii) identifying the relevant studies, (iii) study selection, (iv) data charting, and (v) collating, summarizing, and reporting the results. A collaborative research team approach was used in the iterative process of developing the research questions, search strategies, and data extraction form. Further, the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR)  checklist was used post-hoc as a rigorous reporting guideline (S1 Appendix).
Step one: Identifying the research questions
The following research questions were explored: What were the main themes identified across the literature pertaining to dementia-related palliative and end of life care? Were there gaps in knowledge identified in the literature? In literature that reported on both rural and urban populations, were there any differences in findings between rural and urban? Were there any differences in findings based on individual characteristics such as sex and gender or study characteristics such as the country in which the literature originated?
Step two: Identifying the relevant studies
A broad search strategy was designed with the guidance of a university health sciences librarian. Searches were conducted across four scholarly databases (MEDLINE, EMBASE, PSYCINFO, and CINAHL) that included key search terms related to “palliative” or “end-of-life”, “dementia”, and “rural”. Search strategies were customized to each specific database and are included in S2 Appendix. Final searches were completed on November 13, 2018, and restricted to English language only. The reference lists of studies selected for inclusion were hand-searched as a supplemental approach to identify any additional relevant studies.
In addition, grey literature and organization sites were searched. Grey search strategies are itemized and described in S3 Appendix.
Step three: Study selection
All records were first imported to EndNote Desktop Version X8 (Clarivate Analytics, Philadelphia, United States) reference management software and then exported to DistillerSR (Evidence Partners, Ottawa, Canada) systematic review software. After deduplication, remaining items were screened for inclusion. Inclusion and exclusion criteria are itemized in Table 1.
Forms were created and piloted in DistillerSR to screen the peer-reviewed literature across two levels. The first author screened all records and three coauthors each screened one-third of all records at the first level (title/abstract), followed by second level screening (full-text) conducted independently by two reviewers. The grey literature underwent an initial screen for relevance by the first author and all remaining records were screened in-depth by the first author and one coauthor. All types of original research methodologies and designs were eligible for inclusion. Inclusion criteria required the literature was relevant to the research questions regarding palliative or end-of-life care for rural people with dementia and their families (see Table 1). Unresolved screening conflicts were resolved by the second author.
The reference lists of peer-reviewed studies ultimately selected for inclusion were hand-searched and three additional studies were identified for inclusion.
Step four: Data charting
The first author extracted key characteristics of the literature including author, year, country, objective/topic, study design/document type, and sample), findings, limitations, and conclusions relevant to this review. Additional information included whether the study was rural or rural-urban and the definition of rural used (when provided).
Step five: Collating, summarizing, and reporting the results
Following the methodological framework of Arksey and O’Malley  and enhanced by Levac et al , this review incorporated both numerical summary data and thematic analysis. Peer-reviewed literature were collated by study methodology, publication year, and country and grey literature was collated by document type, publication year, and country. Thematic analysis of the main findings of the included literature was conducted. An inductive approach to thematic analysis was used to search for repeated patterns of meaning within the main findings of the charted data. The main findings were read and re-read thoroughly and analytically using a semantic approach to identify common, re-occurring explicit words or surface meanings in the data. Annotation and color highlighting were used to code the data as themes emerged and ultimately, data were named and grouped according to similarities or patterns.
Twenty-four items (n = 12 peer-reviewed research articles and n = 12 grey literature) were identified for inclusion in this review following the search and screen process represented in the modified PRISMA  flow diagram (Fig 1).
Overall, the literature included for synthesis used similar definitions or conceptualizations of the terms palliative care and end-of-life care as those presented earlier in this review.
Frequency distribution of the country of origin for the peer-reviewed literature and the grey literature (as well as additional numerical information regarding year, study design/document type, and whether rural or rural-urban) are illustrated graphically in Figs 2 and 3, respectively and charted data are presented in Tables 2 and 3, respectively. Analysis of the main findings identified five key overarching themes related to: 1) dementia knowledge, 2) services and supports, 3) decision-making, a person-centered approach and collaborative care, 4) artificial nutrition, hydration, and comfort care, and 5) quality of life and death. Themes are described in detail below and each of the five themes were mapped to the literature in Table 4.
Most peer-reviewed studies were quantitative (n = 7) [16–22], with publication dates ranging from 2001 to 2018, six of which focused on both rural and urban populations [16,17,19–22]. Quantitative study designs included three retrospective cohort [16,20,21], two retrospective cross-sectional [17,22], one retrospective longitudinal and cross-sectional , and one randomized control trial . Five peer-reviewed studies were qualitative [23–27] published from 2006 to 2018, four of which focused solely on rural populations [23–26]. Qualitative study designs employed the following methods: focus groups [23,26,27], in-person interviews , and a biographical narrative . Studies were most commonly conducted in the United States (n = 9) [16,18–23,26,27]. One was conducted in each of Australia , Canada , and Sweden . Overall, studies involved more female participants than males [16,18–23,25–27]. One study had more males than females  and in one study participant sex or gender was not reported .
Grey literature included mainly conference abstracts (n = 9) [28–36], and one of each of the following: metadata table , media release , and personal reflection . Conference abstracts were published from 2011 to 2018 and were primarily from the United States (8/9) [28,29,31–36]. Five of these had a focus on rural populations [29,30,33,34,36], three on rural-urban [28,31,32], and one  that was unspecified. One abstract  was from Scotland which had a rural focus. The 2017 metadata table contained global rural data from the Global Dementia Observatory, World Health Organization Indicator Metadata Registry . The media release  was from Australia dated March 14, 2018 and the personal reflection  was from the United States (no date). Both of these involved a rural-urban focus.
Sex and gender was not addressed in the grey literature; however, almost all of the peer-reviewed studies reported on the sex of participants and none reported on gender. Overall, there were greater numbers of female participants in all but one study , and in one study sex was not reported . Sex differences in outcomes were identified in four studies [18–20,22]. Specifically, hospice recipients with dementia were generally female , as were hospice decedents with advanced dementia . Among nursing home residents, being male was significantly associated with feeding tube use  with females over three times more likely to receive comfort care versus feeding tubes .
The following themes emerged: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. Each of the peer-reviewed studies and grey literature are mapped to themes (Table 4) and their frequency of occurrence by theme is illustrated graphically (Fig 3).
Knowledge about dementia
Six peer-reviewed studies reported on knowledge about dementia which varied among people in general living in the community, people with dementia and their families, and health care and service providers [17,18,23–26]. Three of these studies explored knowledge about life-prolonging care [18,23,26].
A Swedish study that examined dementia care and service systems in nine municipalities reported on the educational level of professional care providers such as physicians, specialists, nurses, occupational therapists, physiotherapists, and social workers . Professional care providers with specialized knowledge about dementia were reportedly rare, and those with such knowledge were typically employed in residential homes . Further, the educational level (Master’s, Bachelor’s, short-cycle tertiary, post-secondary non-tertiary, upper secondary) of professional care providers was lower in general for those working in palliative care compared to those involved with screening, diagnostics, and treatment . Home healthcare nurses reported feelings of helplessness in their [lack of] knowledge about how to help people with dementia .
Healthcare providers acknowledged the importance of informing patients and family caregivers about end-of-life care to facilitate discussion about their expectations and discuss available treatment and support options . Professional care providers stated that although caregivers were often grateful for having these discussions, many avoided them and instead accessed information through avenues such as community organizations, family members involved in health care, support groups, and the internet . In a case study of one rural couple living with dementia, information was provided by a multidisciplinary community dementia care service through regular discussion with a case manager to identify and address their changing needs over the course of one year prior to the death of the spouse with dementia .
Among older rural adults, goals of care (life prolonging, limited, or comfort care) in advanced dementia were associated with levels of health literacy, where those with the highest health literacy levels were more likely (12x) to choose comfort care compared to those with the lowest health literacy levels . Knowledge about feeding tubes was found to be similarly high (average 91%) between African Americans and Caucasians .
Eight grey sources included information about dementia knowledge [30–34,36,38,39]. Five of these were conference abstracts that presented technology-assisted remote delivery of information and education, that could be optimally used in rural or remote settings [30,32–34,36]. These focused on providing information and education to health care providers in primary care  and long-term care settings [30–33], and to patients and families in hospital settings .
Positive effects of learning among health care providers included improvements in skills [30,33,34], perceptions of team-based care [30–33], attitudes , perceptions of self-efficacy and confidence [33,34], feeling more valued in their role , and improvements in knowledge related to geriatrics and palliative care [33,34], including their ability to share this knowledge with other providers . Rural care home staff and residents acknowledged that the ability to access dementia-related specialist expertise remotely allowed for faster assessment and treatment management . Various technology-assisted methods were discussed as a means to effectively address dementia knowledge and information needs in rural and remote areas [30–32] and enhance the ability of healthcare providers to provide better care . Among health care providers who received remote education, more than half reported this modality was as effective as in-person training . Key knowledge-related issues were presented regarding palliative care specifically intended to improve quality of life for people living with Parkinson’s Disease (PD) and its range of associated symptoms [such as PD dementia] including confusion about the term ‘palliative care’, a lack of patient and family education post-diagnosis, and physician attitudes and training .
The importance of increasing knowledge and education about dementia care for aged care providers and family members was also highlighted in a 2018 media release and personal reflection written by a daughter caregiver, respectively [38,39].
Availability, accessibility, and utilization of palliative and end-of-life care services and supports
Peer reviewed studies.
Seven studies reported findings related to dementia-related palliative and end-of-life care, support services, and/or preferred care settings [16,17,19–21,24,25]. Three of these studies were focused on hospice care [16,19,20].
Across rural and urban participants, availability and utilization of care services were lower for palliative care compared to screening, diagnostics, and treatment . Although palliative care was largely available and well-utilized in most of the municipalities under study within the home, in nursing homes, residential homes, and institutional care, dementia-specific care was less available . Where dementia-specific care units were available, they were used by most study participants . Advance directive services were available in just two of the nine municipalities involved and were available across all disease stages however, whether these municipalities were rural or urban was not identified, and few people reportedly used these services and only did so during the end-of-life stage . Rural nursing homes were smaller and less likely ‘for profit’ compared to urban nursing homes and rural nursing home residents with severe dementia were more likely than were urban residents to have advance directives . Overall greater service use was associated with being nonwhite and having had a stroke . Having an advance directive in place was associated with less likelihood of hospitalization and intensive care for both rural and urban nursing home residents .
Hospices caring for people with dementia were more likely for-profit, larger, provided care for five or more years, and served more patients from nursing homes . Among discharged hospice patients, patients with dementia were more likely to have long stays compared to patients without dementia, particularly in smaller hospices . Hospice access and use among nursing home decedents with advanced dementia tripled between 1999 and 2006 and length-of-stay increased from 46 to 118 days however, the lowest rates of hospice use for this group were found among states described as ‘more rural’ . Compared to the mild-moderate dementia group, advanced dementia hospice decedents were more often younger and female, with advance planning in place regarding do-not-hospitalize or do-not-resuscitate orders, and had stays of 90 days or more . Findings from the Family Evaluation of Hospice Care survey showed that just 12% of hospices were identified as rural and hospice recipients with dementia were more likely female, had a longer length of stay, and were less likely to receive in-hospital or for-profit hospice care, compared to those with other diseases .
Information about access to end-of-life care services and supports for rural people living with dementia often came from other unspecified family members, health centers, physicians, community care organizations, support groups, and the internet . A case study described access to and utilization of a local multi-disciplinary community dementia care service that effectively met the needs of a rural couple living with dementia whose preferred care setting was to remain in their home throughout the end-of-life stage . The non-institutional care options provided (such as ongoing support via telephone and in-home) allowed the wife to provide end-of-life care to her husband at home until his death .
All of the grey literature referred to availability, accessibility, and utilization of relevant care and support services, and/or preferred care settings [28–39]. Most of these (9/12) were conference abstracts that referred to the potential for [31,32], or implementation of [28–30,33–36] technology-assisted care support or service delivery for people with dementia and their families, particularly for those living in rural or remote areas.
The need for increased access to palliative or end-of-life care services and support was reflected in a 2018 media release from Australia that referred to a political call for increased funding of the Nightingale Nurses program to improve end-of-life care and support dementia care and support in South Australia . Indicator metadata  from the World Health Organization identified just seven countries as having available palliative and end-of-life care services for dementia in the community in rural areas (Australia, Chile, France, Italy, Netherlands, Sweden, and Switzerland). In the United States, a daughter’s personal reflection of her rural parents’ dementia care journey described the limited options for local care and the effect this had on the ability of family to visit, and identified a need for support networks in rural areas .
Remote technology was presented as a potential means to increase access to palliative or end-of-life care services or supports for people living with dementia [28–36], especially those in rural areas, which might allow them to remain in their preferred care setting (i.e. place of residence or in their local community). Telehealth and other videoconferencing methods to deliver specialist care in rural areas often results in benefits to both healthcare providers and people with dementia and their families, including more frequent follow-up, and increased capacity of providers to manage challenging cases locally which may reduce hospitalization  and patient and family travel burden [28,30,35]. Strategies for successful sustainability of remote specialist care delivery include buy-in from key stakeholders, anticipation of potential scheduling and administrative issues, ongoing communication, and provision of tech support . Participation in a telephone-based initiative for community-living veterans with dementia and other high-risk conditions upon discharge from hospital increased palliative care and hospice referrals by 5% and 4%, respectively .
Decision-making about care, the value of a person-centered approach and collaborative support
Eight studies reported findings related to palliative or end-of-life care decision-making, a person-centered approach and/or collaborative support for people with dementia [18,21–27]. Four of these were focused on preferences for life-sustaining options [18,22,23,26].
Decision-making for persons with dementia and their care partners typically involved consultation with their physician and other family members . Decisions were at times delayed by family members who avoided conversations about the future . The importance of person-centered, collaborative care in decision-making was illustrated in a rural case study where a couple living with dementia decided to discontinue residential respite care . Support was provided in-home using a person-centered, case-management approach within a community collaborative model of care for end-stage dementia. Collaboration between the couple, their case manager, and other care providers, along with a focus on the desires and needs of the couple, facilitated spiritual reflection and a sense of relief during end of life at their home.
Both rural and urban family members of older adults with dementia living in a nursing home identified as advocates for their family member, and expressed few desires regarding death beyond hoping it would come both quickly and peacefully . A study that examined end-of-life service use for those with severe dementia in rural and urban nursing homes reported that during the last 90 days of life, rural nursing home residents were more likely than urban residents to have do-not-resuscitate orders and/or living wills and less likely to have used feeding tubes .
Decision-making about end-of-life care was reportedly influenced by a decision-aid video among rural older adults who participated in a randomized control study . Those who viewed the decision-aid video (the intervention group) were more likely to opt for comfort care (symptom relief) (91%) compared to the control group (70%) . Nine percent of the intervention group opted for limited care (hospitalization but no life-saving measures) versus 5% of the control group and none of the intervention group opted for life-prolonging care compared to 16% of the control group .
An exploration of views about end-of-life care among rural community members showed that while they wanted their desires and beliefs considered in end-of-life decision-making, adequate information to help make such decisions was lacking . While many participants recognized the value of early planning and decision-making, there was concern about whether advance directives would be implemented or overruled by health professionals .
Introducing video conferencing technology in rural care homes to provide specialist psychiatric consultation for staff and residents allowed for quicker assessments, treatment review, and regular monitoring which residents and family members recognized as being “more responsive to their needs” . Regular collaboration with specialists using a telehealth consultative model for dementia and palliative care in rural areas was reportedly beneficial, and authors suggested this increased the capacity of primary care practitioners to retain responsibility for patient management . Finding alternative ways (e.g. via technology) to reach patients and caregivers is also necessary to facilitate exploration of their wants and needs and advance planning before later disease stages  and should include a multidisciplinary team approach to delivery of palliative care in remote areas .
In South Australia, another approach to improve palliative care for people living with dementia in rural areas is specialized support provided by “Nightingale Nurses” . This approach allows for persons with dementia to remain cared for in-home when this is their preferred care setting . Rural settings were referred to as often ill equipped to deliver end-of-life care and meet the complex, individual needs of people with dementia, and building a collaborative support network was seen as essential .
Perspectives on artificial nutrition, hydration, and comfort care
Two studies reported differences in feeding tube use among rural and urban nursing home residents with dementia in the United States, both of which found increased use of feeding tubes among urban residents [21,22]. First, using data for nursing home residents over age 65 years with severe dementia living in rural, midsize, and urban counties in Kansas between January 1, 1994 and June 30, 1998, feeding tube use was greater among urban nursing home residents (19.3%) compared to nursing home residents in midsize (8%) and rural (6.4%) counties . Specifically, the use of feeding tubes was associated with living in an urban nursing home, being nonwhite (compared to white) and male (versus female), having either Alzheimer’s disease or stroke and a greater level of dependency as well as having difficulties with swallowing . Second, rural residents were less likely than urban residents to be hospitalized for long periods or in intensive care and less likely to use a feeding tube in the last 90 days of life . Further, use of feeding tubes and services in general were most common among nonwhite urban nursing home residents .
Home healthcare nurses working in rural North Carolina were interviewed regarding their perspectives of artificial nutrition and hydration for people with late stage dementia . Some nurses identified this as a complex issue in end-of-life decision-making with difficulty in determining the degree of the patients’ pain and suffering when they have lost their capability for ‘purposive language’ . Most nurses expressed a focus on providing comfort for both patient and family where artificial nutrition and hydration were used as comfort measures for both. However, many nurses admitted feeling that while these measures can extend a patient’s life and provide comfort to the family, they can also increase patient suffering (i.e. painful procedure, risk of patient restraint to avoid tube removal, risk of infection, aspiration, discomfort, nausea, vomiting, and diarrhea) . Many nurses acknowledged that although they felt such measures were futile, they always discussed options and considered the wishes of patients and their families .
Among interviewed families of rural and urban nursing home residents with dementia, most rural participants were against the use of life-sustaining measures simply to delay death whereas many urban participants were open to such measures and preferred more ‘aggressive’ treatment . African-American and Caucasian community members living in ‘largely rural’ areas expressed similar concern and support in general regarding feeding tube use for people with dementia during end-of-life . While many perceived tube feeding as prolonging suffering, others noted its importance in preventing starvation, providing comfortability, and extending life until all family members could be present . Some also noted the important symbolism of food and caring where denying food to a sick person goes against human nature . Others noted that decision-making about feeding tube use can be impacted by providing information about goals of care  and should involve consideration of key individual factors such as age and cognitive status .
Quality of life and death
Rural home health nurses believed that quality of life can be negatively impacted by prolonging patients’ suffering through the use of life-sustaining measures such as artificial nutrition and hydration . Rural African-American and Caucasian community members acknowledged that when known, honoring the wishes of the person with dementia was important and many reported valuing a natural death without life-sustaining measures where tube feeding was described as worse than death . Many also expressed religious views of life and death as being in God’s hands .
Many rural and urban family members of residents with dementia living in nursing homes were more accepting of eventual death versus imminent death . Most rural family members described an unconditional acceptance of death as a natural process they hoped would be both quick and peaceful . While urban family members (many of whom did not refer to ‘death’ at all) also wished for a peaceful death, they also placed conditions on their acceptance of death, particularly in terms of the timing . As illustrated in the case study of a person centered, community collaborate model of end of life care, such supports have the potential to enhance spiritual reflection and comfort during end of life .
In a 2018 news release, Dementia Australia called for policy and funding to support services such as specialized dementia nurses for rural palliative and end-of-life care, to help people stay in their preferred care setting thereby increasing their quality of life . Similarly, a personal reflection mentioned the importance of addressing the care needs of people living with dementia in rural settings, to avoid non-local placement which decreases the quality of end-of-life for the person with dementia .
Despite the growing numbers of people living with dementia around the world, the need for knowledge about dementia in general and as a terminal disease with an unpredictable trajectory remains. In this review, we identified three key areas for improvement, including: increasing knowledge about dementia in general, especially about the advanced and end-of-life stages of the disease, among health care providers, people with dementia, their families, and caregivers; having informed, early conversations and decision-making about palliative and end-of-life care options; providing a person-centered approach and allowing for palliative and end-of-life care to occur in preferred care settings. These key areas are discussed in terms of access and use in rural areas, and the potential for technological solutions to address these issues. Other findings of this review are considered, including rural-urban differences, the impact of sex and gender, and gaps in the literature.
Access and use of palliative and end-of-life care supports
The lack of available, accessible health services in general in rural settings due to geographical barriers is well-known . The World Health Organization (2017) reported just seven countries as having palliative and end-of-life care services for dementia available at the community-level in rural areas . In this review, the availability and utilization of palliative and end-of-life care services for people with dementia and their families was reported as lower compared to that of screening, diagnostics, and treatment . Further, although hospice access, use, and length of stay among nursing home decedents with advanced dementia was reportedly increasing, rural areas had the lowest rates of use , rural hospice care was reportedly lacking in general , and service use appeared to be relatively mixed. In addition, this review identified the need to overcome rural barriers to providing person-centred, collaborative care, to enable provision of palliative and end-of-life care in-home [25,38,39]. Such options are feasible by increasing home visits and utilizing modern technology, thus increasing equity in care provision . Alternative methods of delivering care and support were presented within the literature synthesized in this review, such as providing in-home visits and telephone support  and using remote technology [28–36]. Using alternative methods to increase support and service access was perceived to facilitate the ability of people with advanced dementia to remain cared for in their preferred care setting and community [28–36].
Potential for technological solutions in rural areas
Alternate ways to deliver health care services and supports that are not face-to-face continue to be developed and implemented across both rural and urban areas to improve accessibility, availability, and utilization  and more specifically, for rural people living with dementia [43–46]. Key benefits of using remote technology in this review included increased provider capacity to gain and provide specialist expertise and retain management of patient care, more frequent follow-ups, decreased likelihood of hospitalization , and reduced travel burden for patients and families [28–30,35]. This review supports the findings of previous reviews regarding the desire to remain cared for at home during end-of-life  and the benefits of technology to support care delivery, including education, in the home, particularly in rural areas that are limited by distance, isolation, and transportation . Potential barriers to using technology in this way were also identified in this review such as a lack of key stakeholder buy-in, scheduling, and tech-support , which are similar to barriers reported in a recent systematic review regarding technology-based interventions to support healthcare .
In this review, providing various methods of delivery of information, care, and support services enhanced the ability of people with dementia and their families to make collaborative, informed decisions. Overcoming barriers to early decision-making is vital and can be facilitated in various ways, including the use of technology to collaborate remotely with specialists [30,34]. A recent review of decision aids to assist family caregivers of people with advanced dementia with end-of-life decision-making found that often technology was underutilized, in spite of the advances made in information and communication technologies (such as interactive websites or mobile apps) .
Sex and gender differences
Most of the peer-reviewed literature considered sex in their analysis and differences were found in four studies [18–20,22]. Firstly, hospice recipients with dementia  and decedents with advanced dementia  were more frequently female . It is possible these findings could be attributed to the longer life span of females in general  and that the risk of dementia increases with age however, it is likely that there are more complex factors involved . Secondly, among nursing home residents with advanced dementia, females were far more likely to receive comfort care (more focus on symptom control and pain relief) versus feeding tubes (more focus on prolonging life) than males [18,22]. Other studies have shown similarly high rates of feeding tube use among males compared to females but the purported reasons for this are unclear [52,53]. Both studies also reported that men were slightly younger than the women [52,53], and one of these studies found that younger age was also associated with better functional status .
Continuing to include sex- and gender-based information and analysis in future studies on palliative and end-of-life care for rural people living with dementia is important to identify any existing differences, which could support the development and implementation of more tailored services and supports that would effectively address needs and preferences that differ across sex and gender.
In studies that examined both rural and urban populations, some rural-urban differences were reported [21,22,27]. One study found that among nursing home residents with severe dementia, rural nursing home residents compared to urban were more likely to have advanced directives in place and were less likely to be hospitalized for long periods or in intensive care . Similar findings were reported among all three studies where rural participants were less inclined to use feeding tubes compared to their urban counterparts. Specifically, two studies found that among nursing home residents with severe dementia, rural nursing home residents were less likely to have used feeding tubes [21,22]. The third study found that among the families of rural and urban nursing home residents with dementia, most rural family members expressed opposition to the use of life-sustaining measures to delay death whereas many urban family members were more open to such measures .
It is perhaps not surprising that the topic of nutrition care at end of life was found to be a concern in this review. The aim of nutrition care at end of life is to provide comfort, and artificial nutrition and hydration can be an invasive measure that increases discomfort, and for these reasons is often not recommended for dementia palliation [54–58]. Little is known about the rural-urban differences in attitude related to artificial nutrition and hydration at end of life. In this review, the attitudinal differences demonstrated between urban and rural represent a facet of end of life care that warrants further inquiry. A better understanding of the reported differences between rural and urban preference for artificial nutrition and hydration at end of life is urgently needed.
In one study, most rural family members viewed death with unconditional acceptance, as a natural process while many urban family members were less inclined to mention death at all and placed conditions on their acceptance of death, especially in terms of when death would occur . These findings are also consistent with those found in two systematic reviews that suggested rural people may have a more deterministic view of illness  and that rural people were more accepting of ill health in general, where ‘good health’ was regarded more in terms of maintaining independence, the ability to work, and their social relationships . Factors that affect attitudes toward death and dying include previous experience, culture, and social networks . This could explain rural-urban differences where experiences, culture, and social connectedness may be distinct in rural communities. Although not all rural areas are inherently the same, rural communities may share more common experiences, beliefs, values, and customs, compared to their more diverse urban counterparts.
Peer-reviewed–grey literature differences
The inclusion of grey literature is a strength of this review which allowed the authors to identify differences and similarities with that of the peer-reviewed literature (which are illustrated by theme in Table 4). Although 75% of both the peer-reviewed and grey literature were similarly conducted in the United States, just one (1/12) peer-reviewed study mentioned the use of remote methods of care for people with dementia and their families during palliative and end of life stages, such as telephone support , particularly for those living in rural or remote areas. In contrast, most (9/12) of the grey literature (primarily conference abstracts), reported on the potential for [31,32], or implementation of [28–30,33–36], remote methods such as technology-assisted care support or service delivery that appeared to be beneficial in increasing access to supports and services and remaining cared for in preferred care settings and communities.
Other differences between the peer-reviewed and grey literature also warrant mention. As noted earlier, perspectives on artificial nutrition, hydration, and comfort care were identified in half of the peer-reviewed literature included in this review (6/12) [18,21–23,26,27] but was not identified in any of the grey literature (0/12). In addition, the demand for policy and funding opportunities to address the needs of people with dementia and their families during palliative and end-of-life stages were exemplified in a 2018 media release (grey literature) . Dementia Australia called on the South Australia political sector for a commitment to various dementia policy and funding that could help address these needs, iterating the importance of service and support access that would allow them to remain cared for in their own community, particularly for those living in rural and remote areas. Other literature included in this review did not speak to the necessity of such policy and funding however, this should not be interpreted as indicating a lack of need.
Gaps in literature
This review found a lack of rural-specific research in general exploring palliative and end-of-life care for people living with dementia; this gap demands attention. Further, all of the literature included for synthesis in this review originated from advanced, industrialized nations (United States, Canada, Australia, Sweden, and the United Kingdom [Scotland]). In fact, most (75%) of the included literature originated from the United States, with no universal system of health care, and one of the richest countries in the world, which is very different from the broader spectrum of existing rural contexts across the globe. The availability of, and access to, health care in rural areas within low and middle income countries is quite different from that of more developed countries in terms of the health needs of the population and their ability to access and receive quality, affordable care by trained health professionals. People living in rural or remote areas encompass almost half of the world’s population  where there are a number of unique conditions that can be both beneficial (such as being supportive, close-knit communities) and detrimental (such as being geographically isolated) in terms of health . Thus, there is an important gap in the available literature regarding palliative and end-of-life care for people living with dementia in rural areas in general, particularly from non-industrialized nations and from countries other than the United States, where healthcare systems can be quite different in other countries
Further gaps were also identified. The literature included in this review was lacking in evidence regarding the financial and social implications of the responsibilities involved for informal/family caregivers’ caring for people with dementia, particularly in rural areas where formal care options and resources are limited. The need for more studies on a national level with large samples of rural caregivers to explore the effects of rurality on caregiving has been highlighted in previous literature . Another identified gap in the literature included in this review was regarding the use of collaborative, multidisciplinary dementia care teams. It is possible such teams are not widely available in rural areas, however one study in this review illustrated the benefits of using of such a model of care for end-stage dementia in their rural Australia community . Further evidence of a similar successful model in previous literature exemplifies the importance of interprofessional dementia care teams as a plausible, effective model in rural North Carolina (United States), as best practice in dementia care where further research is needed . Lastly, the absence of any definition of ‘rural’, or a common definition of ‘rural’, within the included literature illustrates and important gap in existing research, which contributes to the limited comparability described below.
Although the search strategy was intentionally broad with no restriction on publication year, and grey literature was also included (a strength of this review in terms of providing a comprehensive, balanced view of the existing evidence and reducing the potential for publication bias), the search was limited to studies published in English language only. It is possible that some literature sources were missed, which could limit the generalizability of the findings. Generalizability is further limited due to the majority of the literature coming from the United States, with a lack of literature from other countries and healthcare systems to explore differences in trends or patterns. In addition, comparability was limited due to the heterogeneity of the literature included for synthesis, however, thematic analysis of the extracted findings was performed to effectively draw conclusions based on common elements. Further, no quality assessment of peer-reviewed literature was conducted, although this is consistent with the scoping review methodology.
In summary, the literature synthesized in this review provided an understanding and overview of the experiences, needs, and shortfalls of dementia-related palliative and end-of-life care services and supports in rural areas. Key themes were identified and main areas for improvement were discussed. Although there was a paucity of research regarding rural palliative and end-of-life care for people with dementia, several areas were highlighted within the existing literature including the importance of extending further knowledge about dementia, having early conversations about advanced care and treatment options to allow for informed decision-making, and providing a person-centered approach to allow for individuals to remain cared for in their preferred care settings. The potential for using technological solutions to help address rural issues with access to services and supports was also discussed. These findings can be used to inform future research and policy and the development of services, supports, and intervention strategies to improve the lives of people living with dementia and further research is recommended.
S1 Appendix. Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) checklist.
S2 Appendix. Peer-reviewed literature search strategy.
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