Peer-reviewed studies.

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 [17]. Professional care providers with specialized knowledge about dementia were reportedly rare, and those with such knowledge were typically employed in residential homes [17]. 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 [17]. Home healthcare nurses reported feelings of helplessness in their [lack of] knowledge about how to help people with dementia [23].

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 [24]. 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 [24]. 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 [25].

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 [18]. Knowledge about feeding tubes was found to be similarly high (average 91%) between African Americans and Caucasians [26].

Grey literature.

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 [34] and long-term care settings [30–33], and to patients and families in hospital settings [36].

Positive effects of learning among health care providers included improvements in skills [30,33,34], perceptions of team-based care [30–33], attitudes [33], perceptions of self-efficacy and confidence [33,34], feeling more valued in their role [30], and improvements in knowledge related to geriatrics and palliative care [33,34], including their ability to share this knowledge with other providers [34]. Rural care home staff and residents acknowledged that the ability to access dementia-related specialist expertise remotely allowed for faster assessment and treatment management [30]. 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 [32]. Among health care providers who received remote education, more than half reported this modality was as effective as in-person training [33]. 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 [31].

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].

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 [17]. 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 [17]. Where dementia-specific care units were available, they were used by most study participants [17]. 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 [17]. 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 [21]. Overall greater service use was associated with being nonwhite and having had a stroke [21]. Having an advance directive in place was associated with less likelihood of hospitalization and intensive care for both rural and urban nursing home residents [21].

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 [16]. Among discharged hospice patients, patients with dementia were more likely to have long stays compared to patients without dementia, particularly in smaller hospices [16]. 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’ [19]. 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 [19]. 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 [20].

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 [24]. 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 [25]. 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 [25].

Grey literature.

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 [38]. Indicator metadata [37] 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 [39].

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 [30] 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 [29]. 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 [35].

Peer-reviewed studies.

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 [24]. Decisions were at times delayed by family members who avoided conversations about the future [24]. 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 [25]. 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 [27]. 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 [21].

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 [18]. 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%) [18]. 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 [18].

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 [26]. 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 [26].

Grey literature.

Six grey sources referred to decision-making, the importance of a person-centered approach, and/or collaborative support [30–32,34,38,39].

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” [30]. 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 [34]. 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 [31] and should include a multidisciplinary team approach to delivery of palliative care in remote areas [32].

In South Australia, another approach to improve palliative care for people living with dementia in rural areas is specialized support provided by “Nightingale Nurses” [38]. This approach allows for persons with dementia to remain cared for in-home when this is their preferred care setting [38]. 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 [39].

Peer-reviewed studies.

Six studies reported on perspectives about artificial nutrition, hydration, and/or comfort care during palliative or end-of-life stages of dementia [18,21–23,26,27].

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 [22]. 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 [22]. 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 [21]. Further, use of feeding tubes and services in general were most common among nonwhite urban nursing home residents [21].

Home healthcare nurses working in rural North Carolina were interviewed regarding their perspectives of artificial nutrition and hydration for people with late stage dementia [23]. 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’ [23]. 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) [23]. Many nurses acknowledged that although they felt such measures were futile, they always discussed options and considered the wishes of patients and their families [23].

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 [27]. 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 [26]. 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 [26]. Some also noted the important symbolism of food and caring where denying food to a sick person goes against human nature [26]. Others noted that decision-making about feeding tube use can be impacted by providing information about goals of care [18] and should involve consideration of key individual factors such as age and cognitive status [26].

Grey literature.

No articles in the grey literature reported on perspectives about artificial nutrition, hydration, and/or comfort care during palliative or end-of-life stages of dementia.

Peer-reviewed studies.

Four studies, all qualitative, discussed the quality of life and death during palliative or end-of-life stages of dementia [23,25–27].

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 [23]. 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 [26]. Many also expressed religious views of life and death as being in God’s hands [26].

Many rural and urban family members of residents with dementia living in nursing homes were more accepting of eventual death versus imminent death [27]. Most rural family members described an unconditional acceptance of death as a natural process they hoped would be both quick and peaceful [27]. 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 [27]. 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 [25].

Grey literature.

Two grey sources reported content related to the quality of life and death during palliative or end-of-life stages of dementia [38,39].

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 [38]. 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 [39].