Transportation services in society for individuals living with dementia in long-term care facilities: A scoping review

Abstract

Objectives:

Significant numbers of adults with dementia require long-term care services. For example, around 750,000 people who live in nursing homes have a diagnosis of dementia. Transportation insecurity for the long-term care facility population has not received sufficient attention. This scoping review aims to explore the literature on non-emergency medical transportation for long-term care facility residents with dementia and identify research gaps related to transportation challenges faced by this vulnerable population.

Design:

A scoping review.

Setting and Participants:

This review included research studies published in peer-reviewed journals regarding transportation services for long-term care facility residents with dementia.

Methods:

Arksey and O’Malley’s framework and PRISMA-ScR checklist were followed. The search was performed in five databases, including PubMed, CINAHL, PsycINFO, SCOPUS, and EMBASE. Titles, abstracts, and full-text articles were reviewed by two reviewers independently and all discrepancies were resolved by a consensus discussion.

Results:

Out of 1,405 publications screened, five studies met the inclusion criteria for analysis and synthesis for this review. The need for adequate transportation services was expressed by caregivers, healthcare professionals, and individuals with dementia. Dementia-specific challenges and other transportation insecurity issues related to social determinants of health, such as finance and rural and urban contexts, were disclosed. Surprisingly, no studies explored transportation insecurity as a primary focus for individuals with dementia in long-term care facilities, representing a significant literature gap.

Conclusions and Implications:

The findings of this review address critical literature gaps related to transportation challenges faced by long-term care facility residents with dementia and provide evidence to guide and develop transportation service systems as well as potential interventions for long-term care residents, especially those with dementia. Further explorations and experiments are needed to establish long-term care facilities with dementia-friendly features, which enhance accessibility and quality of life for these residents.

Brief summary:

Challenges related to social determinants of health were disclosed in the context of supporting transportation services in society for individuals living with dementia in long-term care facilities.

Introduction

Significant numbers of people with Alzheimer’s disease and related dementias (ADRD) require long-term care (LTC) services.¹ In this study, we define LTC services as those people needing care in a nursing home (NH) or assisted living (AL) setting. In the United States, approximately 46% of NH residents and 42% of AL residents have ADRD.¹ Among people with ADRD in LTC, transportation insecurity (a situation where one cannot move from place to place safely, promptly, and independently because of the lack of necessary transportation resources) has been addressed as a critical social determinant of health (SDOH).^2–5 This is particularly true for older adults with ADRD. One review study reported that the need for dementia-friendly transportation was reported by over 20% up to 70% of study participants, with high demand, especially in rural areas, although the actual use of transportation services is very low, around 20–30%.⁶

Non-Emergency Transportation Needs Specific to LTC Facility Residents

In the case of non-emergency visits, despite support from the U.S. federal government for non-emergency medical transportation, there are numerous challenges, such as rising costs, a lack of continuity among transportation vendors, long wait times, and frequent driver no-shows.⁷ Thus, some LTC residents rely on their families or caregivers for transportation assistance. Without transportation support, some residents might hesitate to seek help from healthcare providers or even fail to attend important follow-up appointments. Furthermore, arranging transportation for all resident appointments is burdensome for LTC staff and caregivers. Ensuring evidence-based models of care that enable accessible, safe transportation services for people within and outside the NH is an important area of study.⁸

Challenges Experienced by LTC Residents with ADRD

Patients who continuously require specialty care for a certain diagnosis showed a significant, consistent drop in specialist visits, ranging from 0.9% (for a diagnosis of multiple sclerosis) to 67.1% (for a diagnosis of severe mental illness, including ADRD) in specialist use, despite having telehealth support, after the transition to a NH.⁹ Furthermore, this study highlights the barriers to continuous specialty care among LTC residents with ADRD, which is associated with a lack of available transportation or dementia-friendly transportation for specialized physical examinations or procedures that cannot be performed through telehealth.⁹

Additionally, persons with ADRD experience unique challenges in using transportation services: emotional (e.g., stigmatization, isolation), physio-behavioral (e.g., inability to get transportation independently), cognitive decline and orientation-related factors (e.g., forgetfulness, locating oneself geographically), and financial (e.g., unable to afford services).^6,10 Due to these challenges, it may be essential to have an accompanying caregiver, such as family or NH staff, during travel.

People with ADRD can feel confined and trapped in certain environments because of restrictions in mobility (e.g., locked doors and gates),¹¹ which may increase perceptions of transportation insecurity. Due to the unique, challenging characteristics of ADRD and physical and environmental restrictions, a multidimensional approach to supporting transportation for persons with ADRD is needed. With more supportive dementia-friendly transportation services, people with ADRD may become more mobile and independent and experience higher levels of transportation security, leading to better outcomes.¹² For example, the use of effective transportation services was associated with lower mortality rates among older adults because it enabled the delivery of personalized LTC services.¹³ Nevertheless, there is scant research exploring the desires, challenges, and experiences of LTC residents with ADRD regarding transportation services and travel outside the facility.

Importance of Dementia-Friendly Transportation Services in LTC

In a recently published scoping review, investigators identified five necessary components of dementia-friendly transportation services, including availability, accessibility, acceptability, affordability, and adaptability.^6,14 In this review, investigators highlighted that the impact of poor transportation services is more serious in rural areas compared to urban areas.⁶ However, this review did not specify the setting of included studies and did not limit the year of publication. As the needs of older adults in LTC differ from those in other settings, it is essential to investigate the needs, including transportation needs, of older adults with ADRD specifically in LTC. Therefore, our research question for this scoping review is: How has transportation insecurity been conceived as a SDOH for people with ADRD in LTC facilities?

Methods

The protocol of this scoping review was registered on the Open Science Framework (OSF) Registries on July 11^th, 2024 (http://osf.io/swneh). Arksey and O’Malley’s framework and PRISMA-ScR checklist were used to guide our study (Table S1).^15,16 The literature search was carried out in five databases, namely PubMed, CINAHL, EMBASE, SCOPUS, and PsycINFO. The inclusion criteria for this review are research articles written in English and published as original research studies in a peer-reviewed journal. Included articles must investigate transportation use and challenges among persons with ADRD in LTC facilities. We included publications about LTC facilities as a primary care setting, but some publications included other settings along with LTC (e.g., hospitals). International studies were included. We limited our search to articles written in English and published from 2015 to July 5^th, 2024. We selected 2015 as our search start date due to substantial policy changes occurring at the time (e.g., staffing), which may have potentially contributed to increased instability regarding transportation support for NH residents, thereby exacerbating transportation insecurity.^17–19 We excluded dissertations, reviews, protocols, books, book chapters, poster presentations, editorials, letters, abstracts with no full text available, and other unpublished works. The final list of keywords was established after consulting with a librarian at Columbia University Health Sciences Library to improve search quality (Table 1).

Table 1.

An overview of key search terms (n = 1405)

Databases	Keywords
PubMed: 34 publications identified.	(transportation[MeSH Terms] OR transportation*) AND ("cognitive dysfunction"[MeSH Terms] OR "dementia"[MeSH Terms] OR "Alzheimer disease"[MeSH Terms] OR "cognitive defect*" OR "cognitive dysfunction*" OR "cognitive* impair*" OR dement* OR alzheimer*) AND ("nursing homes"[MeSH Terms] OR "nursing home*" OR "assisted living*" OR "independent living*" OR "skilled nursing*")
EMBASE: 177 publications identified.	(('traffic and transport'/exp) OR transportation*) AND (('cognitive defect'/exp) OR ‘cognitive dysfunction’ OR ‘cognitive defect*’ OR 'cognitive* impair*' OR dement* OR alzheimer*) AND (('nursing home’/exp) OR 'nursing home*' OR ‘assisted living*’ OR ‘independent living*’ OR ‘skilled nursing*’)
CINAHL: 17 publications identified.	((MH "Transportation+") OR transportation*) AND ((MH "Cognition Disorders+") OR (MH "Dementia+") OR (MH "Alzheimer's Disease") OR ("cognitive disorder*") OR (“cognitive dysfunction*”) OR (“cognitive defect*”) OR (“cognitive* impair*”) OR Dement* OR Alzheimer*) AND ((MH "Nursing Homes+") OR “nursing home*” OR “assisted living*” OR “independent living*” OR “skilled nursing*”)
PsycINFO: 12 publications identified.	(transportation* OR (DE "Transportation")) AND ((DE "Cognitive Impairment") OR (DE "Dementia") OR (DE "Alzheimer's Disease") OR (“cognitive dysfunction*”) OR (“cognitive defect*”) OR (“cognitive disorder*”) OR ("cognitive* impair*") OR dement* OR Alzheimer*) AND (“nursing home*” OR (DE "Nursing Homes") OR “assisted living*” OR “independent living*” OR “skilled nursing*”)
SCOPUS: 1165 publications identified.	(transportation*) AND ((“cognitive* impair*”) OR (“cognitive dysfunction*”) OR (“cognitive disorder*”) OR ("cognitive defect*") OR dement* OR Alzheimer*) AND (“nursing home*” OR “assisted living*” OR “independent living*” OR “skilled nursing*”)

Titles, abstracts, and full-text articles of all extracted studies from databases were independently screened and reviewed by two reviewers (SH and SN) using Rayyan, a web-based review platform.²⁰ Any disagreements between these two reviewers were resolved by discussion. We conducted a narrative synthesis of the included studies. The included studies were categorized based on country, care setting, study design, dementia measures, dimensions of transportation services, and transportation challenges.

Results

Characteristics of Included Studies

A total of 1405 publications were retrieved from five databases after initial searches (Figure 1). A total of 290 full-text publications were reviewed. Ultimately, five publications were included in this review. The place, setting, specific aims, design, methods, and relevant findings of all included studies are presented in Table 2.

Figure 1.

PRISMA Flow Diagram for the scoping review process.

Table 2.

Characteristics of included studies (n = 5)

Last name of first Author (Year)	Country, Setting	Study Design, Sample Size	Aim	Study Description	Main Relevant Findings
Bartley (2023) 21	United States of America (USA), Various types of settings	Retrospectiv e cohort study, 3,224 people (1,853 people with dementia and 1,371 with mild cognitive impairment [MCI])	To examine relationship between physical activity and social determinants of health (SDOH) among older adults with MCI or dementia	SDOH domains (education, depression, alcohol use, stress, financial resource strain, social connections, food insecurity, and transportation needs) were compared according to physical activity level among people aged over 55 years with MCI or dementia.	41 people reported living in nursing home, 441 living in assisted living facility, 2,742 reported other living arrangements. The findings revealed no statistically significant association between the likelihood of physical activity and transportation needs.
Han (2021) 22	South Korea, Various types of settings	Retrospective observational study, 457,524 adults with dementia and 2,625 family caregivers	To examine costs of dementia care based on the utilization of healthcare and long-term care (LTC) services	The data from two national insurance databases (457,524 adults who had a record of codes of dementia), and survey study (2,625 family caregivers completed the survey) was used to examine expenditures on both direct medical and indirect costs. Indirect costs included healthcare-related transportation, foods, diapers, and paid care workers. The definition of transportation costs is annual expenditures on transportation for hospital or outpatient visits and LTC service use of a patient with dementia. The data from 891 family caregivers was used for analysis.	Among 891 family caregivers of persons with dementia, 523 individuals used home- and community-based services, 143 used nursing home services, and 225 did not use LTC insurance benefits. General indirect cost (expenditures on transportation, foods, diaper, and paid care workers) per person was similar between LTC users and non-users.
Hohen berg (2021) 24	Australia, Various types of settings	Qualitative study, interview with 49 and focus group with 59	To explore current service provision with the purpose of developing Community Geriatrics service that addresses the needs of older adults	Interview with 49 general practitioners and focus group with 59 people including older adults, caregivers, workers, and nursing home directors were carried out.	Five themes emerged: 1) active health conditions, 2) active social challenges, 3) referrals, 4) access, and 5) awareness. Theme 4 access included two subthemes: lack of transport options and inaccessibility of local geriatrics clinics and specialists. In rural and suburban areas, less accessible and inadequate transportation options lead to social isolation.
Mehdi panah (2022) 25	USA, Various settings	Mixed Methods study, Caregivers (18 Mexican Americans and 11 non-Hispanic Whites) and healthcare professionals (16 completed the first session and 14 completed the second session)	To determine the perceived needs of informal caregivers, (both Mexican American and Non-Hispanic White) of individuals with cognitive impairment and dementia; and identify specific ethnic differences need among target population	This population-based study was part and based of the Brain Attack Surveillance in Corpus Christi - Cognitive (BASCI-C) project in 2022 aiming to assess the prevalence and trajectory of cognitive impairment and dementia via concept mapping, mixed-method design. The study consisted of three groups: two groups of caregivers and one of health professional group. The informal caregivers were recruited through a door-to-door case ascertainment process to recruit community-residing and nursing home residents and their informal care providers.	Access to transportation for medical visits were addressed by both caregivers and professionals.
Wolff (2018) 23	USA, Nursing homes	Retrospectiv e cohort study, 2,676 community-living older adults and their caregivers (944, 31.9% of the study sample had dementia)	To examine factors related to long-term nursing home entry, develop a prognostic model for the entry, and translate the model to guide the use of the model in risk stratification	National survey data linked with Minimum Data Set data was used. Outcome measures included nursing home entry and mortality. The study also developed a model to predict entry based on risk factors.	Having dementia was independently associated with nursing home entry, while caregiving-related strain, such as helping with transportation, was inversely associated with nursing home entry.

Abbreviations: USA, United States of America; SDOH, social determinants of health; MCI, mild cognitive impairment; LTC, long-term care; BASCI-C, Brain Attack Surveillance in Corpus Christi-Cognitive.

In terms of the study design, three studies were quantitative,^21–23 one was qualitative,²⁴ and one was mixed methods.²⁵ Four studies included various care settings, including NH, AL, home care, and other (no description about other).^21,22,24,25, and one study included only NHs.²³ Three studies were situated in the United States,^21,23,25 one study was in South Korea,²² and one in Australia,²⁴

In terms of characteristics of study participants, one study included persons with ADRD.²¹ Two studies included both persons with ADRD and their families.^22,23 One study included various participants, including healthcare professionals, older adults with ADRD, caregivers, and NH directors.²⁴ One study included caregivers and healthcare professionals.²⁵

Identified Measures for Dementia

In terms of information or descriptions about ADRD, two studies included participants with a diagnosis of either mild cognitive impairment (MCI) or dementia using the International Classification of Diseases (ICD) codes.^21,22 One study included caregivers of persons with MCI or dementia based on the Montreal Cognitive Assessment (MoCA) scores.²⁵ Two studies did not provide information about how ADRD was identified.^23,24 None of the included studies provided information about the types and/or stages of dementia (e.g., types such as Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, vascular dementia, and mixed dementia, and stages such as early, middle, and late stage).^26–29

Identified Dimensions of Transportation Services

One study described information about SDOH variables, including transportation needs.²¹ This study revealed no relationship between transportation needs and physical activity levels.²¹ Another study explored the perceived transportation needs of informal caregivers, including Mexican-Americans (n=18) and Non-Hispanic White people (n=11) with dementia and healthcare professionals (n=16).²⁵ Access to transportation for medical visits was a perceived area of concern for both informal caregivers and professionals. Another study considered transportation costs as expenditures for hospital or outpatient visits and LTC service use of persons with ADRD.²² Two studies did not provide detailed descriptions of the dimensions of transportation services, such as the needs, availability, accessibility, or quality of transportation services.^23,24

Other SDOH Challenges Related to Transportation

1). Finance

The cost of arranging and using transportation services is a significant indirect cost of dementia care. For instance, one study, conducted in South Korea, highlighted dementia-related expenditures, including a greater proportion of transportation costs among LTC insurance users compared to LTC insurance non-users.²² However, there is no comparable study based in the United States regarding the expenditures on transportation services for the ADRD population, across different insurance statuses or types.

2). Rural and urban contexts

In terms of transportation services based on urban versus rural contexts, one study included mixed residence locations, including urban/rural areas, but there was no information about the associations between urban/rural contexts and transportation services.²¹ Two studies did not include information about whether the location of residence was in rural or urban areas.^22,23 One study included mixed locations, including urban and rural, and results indicate there was greater concern about transportation and social isolation, most likely due to a lack of accessible transportation, in rural areas.²⁴ One study included participants in Nueces County, Texas, which is primarily urban, and caregivers and healthcare professionals affirmed the need for the critical need for transportation for medical visits for community-residing and older adults with ADRD in NHs.²⁵

Discussion

The findings of this review showed that further exploration and development of dementia-friendly transportation services is needed for individuals with ADRD in LTC. Although only a few studies have emphasized the importance and need of transportation services, there is no study exploring the use and challenges of transportation services in LTC.^30,31 The fact that only a few studies have been published about this issue raises the question of whether the transportation needs of people with ADRD have been de-emphasized or overlooked in the context of LTC services and supports. People with ADRD who require LTC services should have access to necessary transportation to lower perceptions of transportation insecurity and improve their quality of life and well-being.

Rural and urban disparities related to transportation are important issues. For example, prior research supports this as rural hospital discharge planners pointed out the lack of affordable transportation programs, especially for those who are in wheelchairs or for people requiring special equipment for a safe transfer.³² Furthermore, the discharge planners addressed that they sometimes need to use ambulances for non-emergency cases due to a lack of suitable transportation options in resource-constrained rural areas. Discharge planners highlighted higher poverty and disability rates, along with limited transportation infrastructure, including a lack of taxi services and public transportation in rural areas compared to urban areas.³² Moreover, discharge planners had more difficulty getting state approval for NH placement for complex patients with high transportation service needs, especially those with mental health, substance abuse disorders, or ADRD.³² They emphasized the need to increase specialized units for ADRD and provide additional training for the existing workforce, especially for dealing with mental health and ADRD.³² As our review also disclosed, addressing the issue of SDOH, such as rural-urban disparities and financial strain, is essential to improve the quality of transportation services.

Gaps in the Literature

Only one study highlighted transportation as a SDOH and presented findings that transportation needs were addressed in real-world practice.²¹ Nevertheless, none of the studies introduced a systematic measure or survey to assess transportation services nor investigated all dimensions of transportation services, including needs, availability, accessibility, affordability, and quality. Furthermore, no study explored experiences related to transportation insecurity as a primary focus among older adults with ADRD who reside in LTC facilities as well as LTC facility staff or providers who rely on outside transportation services for continuity of care. Finally, none of the studies scrutinized the types of transportation services and accommodations that might need to be made for people with various stages or types of dementia and their challenges in obtaining services in LTC facilities for patients with specific types of ADRD.

Future Research Directions

This review revealed the scarcity of evidence on how to effectively support transportation for LTC residents with ADRD. Exploring various perspectives, including LTC residents with ADRD, family caregivers, facility staff, healthcare providers, and other relevant stakeholders (e.g., policymakers), can provide fruitful insights into how to implement dementia-friendly, non-emergency transportation services through future research. A multidimensional approach is required to provide dementia-friendly transportation services. Multiple factors need to be in place for better care transitioning with the arrangement of transportation, such as sustainability factors (e.g., cost), social and cultural factors (e.g., reluctance to use, acceptability, family engagement), and contextual factors (e.g., workforce, health information exchange (HIE), infrastructure, and education/training). HIE holds special significance. HIE enables secure and seamless access to patient information across healthcare systems. The HIE systems can be leveraged for improved information flow during and after transportation events, ultimately improving care of LTC residents with ADRD.^7,33

As persons with ADRD are vulnerable populations, several studies excluded participants whose cognitive ability is compromised.^34–35 That could be because of ethical issues and the difficulty of transporting individuals with ADRD, but their health care needs should be heard, acknowledged, and valued like any other older adult.

Although telehealth has great potential and may help overcome transportation insecurity, there are some concerns about telehealth, such as difficulty building relationships, lack of technology resources and infrastructure, telehealth-related costs, and anxiety experienced by older adults with ADRD during telehealth encounters.^36,37 For these reasons, telehealth cannot fully replace in-person visits yet. While both telehealth and in-person visits still have room for improvement, combining strengths and benefits from each care delivery mode can yield the best outcomes. It is important to explore and improve the quality of both types of visits – transportation services for in-person visits and telehealth services for virtual consultations. More exploratory studies are warranted to explore dementia residents’ experiences with transportation services for in-person medical appointments.

Practice and Policy Implications

To improve transportation services, we need interdisciplinary collaborations such as care facility administrators, transportation vendors or companies, economists, and policymakers, not limited to healthcare professionals with a deep understanding of NH residents’ transportation needs.³⁸ This review unveiled a lack of attention to the need, importance, and challenges of transportation services for LTC residents with ADRD. In our review, one publication regarding transportation services was published in 2018,²³ while 4 were published after the COVID-19 pandemic began.^21,22,24,25 Since then, more attention has been given to care access, not limited to transportation services, in this setting. The underlying issues and needs for transportation services remain essential. Thus, policymakers and decision-makers may need to acknowledge that persons with cognitive impairment still can have benefits from in-person visits through dementia-friendly transportation services compared to telehealth because of difficulties in virtual communication.³⁹

In addition, in the United States, the federal government allows each state to have some degree of flexibility on the regulations of transportation services, so there is a wide variability in non-emergency medical transportation across states.⁴⁰ Furthermore, although Medicaid typically covers non-emergency medical transportation, the proportion of Medicaid in LTC facility residents is about 60%.⁴¹ Therefore, some residents may need to rely on family assistance or pay out of pocket.

As an example of a supportive transportation system for older adults with ADRD, special transport service (Färdtjänst in Swedish) was initiated in 1975, which is a publicly funded transportation service for individuals with functional limitations, covering older adults even living in NHs. In this way, the implementation of transportation services should not be overlooked for LTC facility residents at the policy level.⁴²

New Paradigm of Dementia-Friendly Transportation

In today’s society, where the healthcare system is undergoing rapid changes with advanced technologies, the concept of transportation should not be just transportation modes. The meaning of transportation should go far beyond just the means of transfer or travel. Transportation services should become multifaceted, with multiple features that offer a range of services to support better travel and care coordination. Transportation services can involve effective real-time communication and data sharing between care settings for multiple parties with an enhanced HIE system.^33,43 In addition, other technologies can be considered for transportation among LTC residents with ADRD, such as assisted robots, mobile phone applications, and automated vehicles.^{10,14,44–46}

Transportation insecurity has impacts across countries. Therefore, we can review other countries’ recent moves to support transportation services for older adults with functional limitations, including cognitive impairment. For example, in Scandinavia, in-car technical support systems, also known as in-vehicle information and communication systems (IVIS) and advanced driver assistance systems (ADAS), are already on the market or in the development phase.⁴² The examples of IVIS and ADAS include parking assistance systems, collision warning systems, automated lane changing and merging systems, and system warning of upcoming situations. The advancement of technology in transportation services through continuous trials and evaluations can contribute to improving transportation services for LTC facility residents and may be generalized to U.S. facilities.

Limitations

There are several limitations to this review. First, we did not perform the quality assessment because we aimed to map and explore the existing evidence and identify research gaps. According to the guidelines by Arksey & O’Malley (2005), quality appraisal of included studies is not strictly required for scoping reviews.¹⁵ This topic is still in the early exploring phase. It can be stated that there is still a long way to go to support the population. Second, we limited our search to English-written studies, which can yield bias by over-presenting research mainly from English-speaking countries. Another thing to consider for future reviews is the selection of databases. To provide broader and deeper insights into the development of transportation services, the exploration of grey literature and other engineering- or transportation-focused databases such as Compendex, IEEE Xplore, TRID (Transport Research International Documentation), and ITRD (International Transport Research Documentation) is recommended for future reviews. Lastly, we broadly included publications that recruited individuals with ADRD in LTC care settings, either in part or in whole. We did not limit the age of individuals with ADRD to capture as many publications as possible. As there are some distinct characteristics based on the stage of dementia, care setting (e.g., NH vs AL), and age, future studies may need to account for those distinctions. Furthermore, given the diversity of terminologies referring to LTC, researchers and practitioners should consider how to carefully use terms, such as ‘AL’ versus ‘NH (skilled nursing facility)’ in the U.S., aligning with ‘residential care homes’ in China. It is important to use proper terminology and clarify the care setting of the study participants, whether they live independently in the community or reside in a certain care facility (AL versus NH), to identify groups of people who may require different levels of transportation services.

Conclusions and Implications

The findings of this scoping review present that older adults with ADRD experience unique challenges, and there is a need to overcome transportation insecurity, an important SDOH. Consequently, they need dementia-friendly, non-emergency medical transportation services in LTC facilities to meet many of their medical requirements. Despite the necessity and significance of such transportation services, there are few studies that examined their experiences and needs. Here, this review shows the need for attention to improve transportation while integrating considerations of SDOH for the population. Developing the process of transportation services requires reflecting upon the needs of persons with ADRD by exploring various perspectives from older adults with ADRD, healthcare providers, and administrators in LTC.