Background
The term ‘dementia’ refers to a number of disorders resulting in a progressive decline in cognition [
1]. Symptoms of memory loss and communication difficulty often precipitate dependence in activities of daily living (ADLs) with consequences for quality of life [
1‐
5]. Dementia is often complicated by comorbid conditions and polypharmacy, necessitating care by multiple providers in multiple care settings [
6]. Older adults with dementia use health care services more frequently than older adults without cognitive impairment [
7].
Approximately 1.5% of the Canadian population has a diagnosis of dementia, and this proportion will nearly double over the next 30 years [
1]. This growth will be accompanied by increases in economic consequences, system constraints related to demand for long-term care beds and community services, and an increase in unpaid informal caregiving hours from 231 million to 756 million hours per year [
1]. There is thus an urgent need for effective coordination of health care and community support services for individuals living with dementia and their informal caregivers [
8].
The nature of dementia frequently requires individuals and their caregivers to contact multiple health care sectors, and to experience transitional periods in which they need to navigate through an often-fragmented system [
6,
7,
9‐
11]. A health care transition can be defined as “the movement patients make between health care practitioners and settings as their condition and care needs change during the course of a chronic or acute illness” [
12]. The care transition process is one of increased vulnerability and risk, due to the potential for inadequate transfers of information, medication errors, and other adverse events impacting patient safety, care quality, and outcomes [
5,
13‐
15]. The dementia experience exists amid current system- and organizational-level inadequacies in care coordination and continuity; overlaps and gaps in health care services further complicate transitions [
11,
16‐
18]. Transitional care is a concept that has been previously described as “a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location” [
19].
Although system navigation and transitional care for persons with dementia have been recognized as priorities for policy [
1], research [
20], and performance improvement [
21], there remains a lack of understanding of how these challenges might best be addressed. Most research on care transitions has overlooked older adults living with dementia [
22]. In fact, a review of studies of transitional care programs [
23] found that some studies purposefully excluded persons with dementia. Literature on transitions has largely focused on specific transitions (e.g., hospital-to-home) [
18,
24,
25]. This trend is echoed in recent studies exploring transitions for persons with dementia [
26‐
29]. For example, Gilmore-Bykovskyi and colleagues [
26] obtained nurses’ perspectives on transitions for persons living with dementia from hospitals to skilled-nursing facilities. Therefore, additional research on care transitions from a cross-system perspective is warranted.
By focusing on cross-system transitions, this study respects the inherent complexity of the health care system. Understanding how health care in Ontario is organized can provide some insight into the system through which participants navigated. Health care in Ontario is governed by the Ministry of Health and Long-Term Care (MOHLTC). The MOHLTC divides health care spending into different sectors of operating expenses. Physicians are funded through the Ontario Health Insurance Program (OHIP), which consists of a portion of MOHLTC funding. As of 2017, most individuals (90.8%) in the province had access to a family doctor or other primary care provider [
30]. The role of the family physician is to provide comprehensive medical care to individuals at all stages of life or disease in various health care settings. They are seen as a central hub for an individual’s care, acting as a gatekeeper for access to and coordination of additional health services, including referral to specialists [
31]. In Ontario, regionalized health organizations provide further infrastructure to support planning and coordination of health services.
1
Health care system improvements for persons living with dementia could be facilitated by a theoretical framework based on an in-depth understanding of how persons living with dementia and their caregivers experience transitions across the care continuum. The objective of this study was to explore the care transition experiences of individuals living with dementia and their caregivers and to use these perspectives to develop a theoretical framework outlining the factors affecting health care transitions.
Discussion
It is clear from the diversity of information that arose from the interviews that care transitions in the context of dementia are complex. Given the significant heterogeneity of transition experiences discussed by participants, it became clear that transitional care cannot be fully described by a series of actions taken to ensure that an individual moves seamlessly from one setting in the health care system to another, as it has been classically defined [
19]. Participants typically did not view transitions as discrete events that could be studied, assessed and/or improved without an understanding of both their personal journey and the broader health care system. The theoretical framework presented in the results section aims to distil a multifaceted topic while respecting its complexity.
Many of the features of existing transitional care models and interventions are consistent with the results of this study. Coleman et al’s [
45]
Care Transitions Intervention (CTI) is tailored to individual goals, indicating consideration of the multiplicity of goals in health care practice. Both the CTI and Naylor and Van Cleave’s [
46]
Transitional Care Model consider factors such as follow-up, professional collaboration, provider consistency, patient education, engagement, and person-centered care; all of which were also identified as important in the theoretical framework. That said, these interventions focus on specific transitions, typically a hospital discharge or acute event [
45‐
47]. The broad perspective adopted for this study facilitated the development of a framework that elucidates aspects of several types of transitions while respecting the continuous nature of transition experiences. The theoretical framework presents a novel contribution to the literature, as it aims to avoid an over-simplification and does not assume a one-size-fits-all transitional care model.
Effective transitional care has the potential to reduce issues associated with fragmentation; however, reductionist thinking can be a significant barrier to the provision of care across the continuum. Complex systems theory has a natural application to the concept of transitions. Cilliers [
48] noted: “A complex system is not constituted merely by the sum of its components, but also by the relationship between these components. In ‘cutting up’ a system, the analytical method destroys what it seeks to understand.” (p. 2). This study indicates that the complex nature of transitions must be respected; rather than reducing transitions to their individual components, transitions are viewed by both persons with dementia and their caregivers as continuous and are situated within a broader context. Despite being asked to describe specific instances of transition, participants tended toward describing their journey through the health care system more broadly. Although some specific transitions (i.e., the transition to long-term care) stood out as distinct and important to participants, separating the transition experience into discrete instances of movement in the health care system does not adequately explain their experiences. Rather than constricting individuals to view transitions through the lens of previous studies and health care system norms, this framework respects the reality presented by the participants.
Distinct from previous work on transitions for older persons [e.g., 45], our framework here urges both practitioners and researchers to think of health care transitions for persons with dementia not as events, but rather another aspect of their dementia journey [
49]. The dementia journey is a complex one, often with multiple transitions, and which the caregiver and person with dementia may experience differently. Both Coleman’s [e.g., 45] and Hirschman’s [
50] programs include family caregivers, but in these articles, patients and family caregivers are generally referred to together, without differentiation. Our framework also emphasizes the parallel experiences and differing realities and goals that occur within the context of dementia care. Misaligned priorities within dementia care have also been documented in Gilmore-Bykovskyi et al.’s [
26] study. During transitions from hospital to skilled-nursing facilities, nursing staff commented on the impact that misalignment in system-level pressures and goals between these settings had on the transition process for persons with dementia [
26]. Similarly, Richardson et al. [
51], in a systematic review aiming to understand transition experiences of individuals with dementia from the perspectives of key stakeholders, found that the perspectives of individuals with dementia, their family members, and care providers did not always match. Hospital pressures led to rushed discharge practices and worse transition experiences. Involvement of families and adequate communication between stakeholder groups facilitated successful transitions [
51]. By including the perspectives of caregivers and persons with dementia, our study further explored the idea of alignment in dementia care contexts. Varying realities and goals between caregivers and persons with dementia led to difficulties during transitions. Similar to Gilmore-Bykovsky and colleagues’ study [
26], in this study wider health care system-level pressures and constraints at times conflicted with the care needs of persons with dementia and their caregivers. We hypothesize that differing priorities and realities may also be true with older adults who are not living with dementia, and this would be an important avenue of future transitions research. In other work of our group, we investigated care transitions of older individuals with hip fracture [
18]; the resulting framework also differentiated family caregivers as a specific area of focus, while recognizing overlap with other domains.
Our framework also highlights that a dementia journey, and transitions embedded within, is significantly impacted by a range of catalysts (often acute events), buffers (e.g., proactive caregivers), facilitators (e.g., positive relationships with health care providers), and obstacles (e.g., lack of awareness and training). In order to appropriately intervene, and support persons on this journey and through numerous complex transitions, practitioners must be aware of the unique blend of catalysts, buffers, facilitators and obstacles that each person living with dementia faces. This observation, and the foundation of our model, is closely aligned with the principles of person-centered [
52] and collaborative care [
53].
Collaborative patient-centred practice, which “is designed to promote the active participation of each discipline in patient care” [
53], can play an important role in addressing transition complexity. Encouraging collaboration across the care continuum rather than between discrete sets of providers can help to ensure that the provision of health care aligns with the way care is experienced. Persons with dementia and their caregivers have individual goals, needs, and perspectives that must be considered during care transitions. A commitment to respecting realities of individuals with dementia and adopting person-centered transitional care approaches can help ensure that system constraints do not overshadow individual needs. This could ultimately enhance quality of care for persons with dementia and limit the occurrence of adverse events [
22]. Consistent with Fortinsky & Downs [
49], we agree that future work on care transitions for persons with dementia must focus on improving the quality and experiences of care transitions, and not simply focus our efforts on delaying or avoiding transitions. Even with prevention and diagnostic efforts in place, persons living with dementia
will experience transitions, and those charged with improving dementia care must plan accordingly [
49]. Individual and family engagement in care can also help providers gain an understanding of the context of transitions, including the community and social support available to those navigating the system.
Limitations and strengths
Limitations of this study included an overrepresentation of well-supported female caregivers and of males with dementia. Recruiting through Alzheimer Society Chapters and a Family Health Team may have yielded a sample more connected to community supports than an average Canadian with dementia. Furthermore, during interviews, caregivers spoke more than their family members with dementia. Despite addressing individuals with dementia directly, persons with dementia often referred to their caregivers. Finally, approximately one quarter of participants reported an unclear diagnosis, though all identified with the umbrella term of dementia. Whether it is related to a lack of clarity in terminology used by providers or poor understanding on the part of the persons with dementia or caregivers, this hazy experience with diagnosis reflects participant realities, which are considered paramount within a constructivist paradigm. In practice, specific dementia diagnoses are based on constellations of symptoms and cognitive testing; therefore, the diagnostic uncertainty within the umbrella of dementia observed in this study reflects the reality of many practitioners as well [
54,
55]. Rather than limiting the generalizability of the study, the broad inclusion of persons who identify with a diagnosis of dementia supports the generalizability of the results to a larger population.
We did not conduct theoretical sampling for transition type because we found that participants often described multiple transitions, and their transition experiences were not always distinct. Based on these initial observations, we used probing questions to further explain the elements of transitions that arose during initial interviews rather than explicitly asking about or sampling for specific transitions. We felt that this approach respected the realities of the cross-system transitions experienced by those that were interviewed. The heterogeneity of types of transitions described by participants made it difficult to provide specific guidance on improving any one given transition (e.g., hospital to home or home to long-term care). However, this study does provide important information about how individuals perceive their health system navigation more generally. The results respect the realities of participants, who feel that their transitions are less distinct and more fluid than traditionally perceived and defined in health care systems research.
Criteria for evaluating grounded theory research outlined by Charmaz [
32] were considered throughout the study design. Credibility was maintained through gathering rich data, transcribing interviews verbatim, and ensuring that initial codes remained close to participant wording. The study has met the criterion of originality, as it addresses a gap in the literature. Resonance with participants was ensured through member checks, wherein researchers presented results to participants for feedback. Nearly half of the participants (
n = 13) engaged in member checks, and every individual agreed that the framework accurately and comprehensively reflected their health care transition experiences. As for the usefulness of the study, it has added a new perspective of cross-system care transitions from the perspectives of those with dementia and their caregivers. It is situated within the Ontario health care system; however, many of the elements deemed important by participants are likely more broadly generalizable.
Conclusion
This study extends current knowledge to include an in-depth account of care transitions from the perspectives of individuals with dementia and their caregivers, who have often been excluded from related research. Obtaining the perspectives of individuals with dementia is not always easy, and their views do not always match those of their caregivers or their health care providers [
56]. We chose to adopt a constructivist outlook that respected these differing realities and perspectives, an idea that was central to transition context.
It is important to incorporate the perspectives of persons with dementia and their caregivers into our knowledge of the dementia journey. Understanding the experiences of persons with dementia interacting with the health care system can help facilitate a more holistic understanding of care transitions, however, this study did not compare the care transitions of persons living with dementia to those of persons without dementia. Due to the intimate link between participant stories and the dementia experience, the voices of persons with dementia cannot be generalized to the voices of all other older adults. Care transitions were often associated with stages of their dementia journey; the diagnosis, for example, signified a transition into the system. Transitions were interrelated and continuous when participants were living at home; a transition into long-term care may be required when the dementia had progressed significantly [
57].
The conceptualization of transitions developed in this study may be used to generate recommendations to improve dementia care across the continuum, in particular as local and national dementia strategies are presently being developed and implemented [
58,
59]. Given the significance of transitions for safety and caregiver stress, improving care transitions may in turn improve the quality of care and quality of life for individuals living with dementia.
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