Considering a Need for Dementia-Specific,Family-Centered Patient Navigation in Canada

Abstract

Patient navigation has been proposed as a novel family-centered, integrated care model to address the care needs of persons living with dementia and their family caregivers by helping them navigate the complex range of dementia services offered in hospital and community settings. A key informant qualitative descriptive study explored the perspectives of 48 healthcare professionals to explore the need for dementia-specific patient navigation. Data were analyzed thematically. We identified one overarching theme: “Variability in the Need for Illness-Specific Patient Navigation” and five themes that highlight considerations when providing navigation to individuals with dementia: (1) Taking Part in Ongoing Training, (2) Addressing Stigma, (3) Focusing on Quality of Life, (4) Defining Home, and (5) A Continuous Process of Support. These themes provide preliminary insights into the conceptual differences about the need for illness-specific patient navigation and the areas within patient navigation where healthcare professionals are encouraged to find consensus.

Keywords

dementia transitions care coordination caregiving

What this paper adds

• To our knowledge, this is the first Canadian study to provide initial insights into the unique considerations of patient navigation programs for individuals living with dementia.

Applications of study findings

• Findings can inform the development and testing of new patient navigation programs that address gaps in dementia care.

• This study provides evidence by specific stakeholder groups to support or refute the need for dementia-specific patient navigators.

Introduction

Dementia health and social care services are fragmented, uncoordinated, and difficult to navigate (Banerjee & Argáez, 2021). Thus, there is great concern over the ability of healthcare systems to adequately serve older adults with dementia as they transition from hospital to home (Wister & Speechley, 2015).

Family-centered care (FCC) is a timely solution to meet the complex and varying needs of individuals living with dementia and caregivers (Hao & Ruggiano, 2020). FCC is an extension of patient or person-centered care that aims to meet the needs of not only the person living with dementia but also the family caregiver (Kokorelias et al., 2019). Through a scoping review of models of FCC across diverse illness populations and care contexts, it was found that the overarching goal of FCC is to develop and implement patient care plans within the context of families (Kokorelias et al., 2019). Within this context, a Universal Model of Family-Centered Care was described (Kokorelias et al., 2019), which noted that irrespective of patient population or care context, FCC interventions to inform care plan development include (1) collaboration between family members and health care professionals, (2) consideration of family contexts, (3) policies and procedures to support PFCC, and (4) patient, family, and healthcare professional education (Kokorelias et al., 2019).

Patient navigation (PN) has been proposed as one model of integrated, family-centered care to support navigation for older adults with complex care needs and their caregivers as they transition from hospital to home environments. While PN programs vary in their scope and function (Kokorelias, Shiers-Hanley et al., 2021), the central premise of PN programs is to utilize a patient navigator (here within referred to as a navigator) to proactively guide and support patients through the healthcare system in order to improve the timely access to services to meet their needs and promote the integration of care (Freeman, 2013; Freeman & Rodriguez, 2011; McMullen, 2013; Willis et al., 2013). Existing PN programs tend to provide informational support, referrals to health and community resources, ongoing monitoring of the dementia diagnosis, emotional support and caregiving skill training (e.g., Bernstein et al., 2019). Additionally, within some of these models of dementia PN, navigators include trained dementia specialists (Bernstein et al., 2019, 2020; Possin et al., 2019) who are trained by clinicians for individuals living with dementia (e.g., dementia-practice nurses) (Bernstein et al., 2019, 2020; Possin et al., 2019).

Research on PN for patients with dementia in Canada is emerging (Banerjee & Argáez, 2021; Bernstein et al., 2020; Markoulakis et al., 2021). To date, however, the programs have primarily emphasized the needs of individuals with dementia in the acute care context and the provision of information to families to assist with treatment decision making in the community-care context (Banerjee & Argáez, 2021); not specifically on the hospital to home discharge needs. Moreover, research has not examined the elements of dementia PN programs that make them unique from PN programs to support older adults with other conditions, such as cancer (Kokorelias, Gignac, et al., 2021). A scoping review of models of family-centered care identified that while some aspects of family-centered care models are illness-specific (e.g., illness-specific education), others are universal (i.e., applicable to any illness population, such as cancer, dementia, stroke) (Kokorelias et al., 2019). Universal family-centered care PN programs that can be applied to any care context may result in timelier implementation (Kokorelias et al., 2019), but may not meet the unique navigation needs of individuals with dementia and their caregivers. Therefore, more research is needed to help distinguish whether there is a need for dementia-specific hospital to home PN programs and what elements must be made dementia-specific. This information can be used to inform future patient navigator programs to best support individuals living with dementia and their families as they transition from hospital to home.

Methods

Design

This study employed a key informant qualitative descriptive study using semi-structured interviews (Sandelowski, 2010) to answer the questions: Is there is a need for dementia-specific hospital to home PN programs and why? And, if so, what elements of PN must be made dementia-specific? This study was theoretically informed by the Universal Model of Family-Centered Care (Kokorelias et al., 2019). Ethics approval for the study was obtained from the Sunnybrook Research Institute. We report our methods in accordance with the Consolidated Criteria for reporting Qualitative Studies (COREQ) in the Supplementary Material (Tong et al., 2007).

Participants, Setting and Recruitment

We engaged HCPs who provide or manage services for older adults with complex care needs (i.e., mixed physical, mental, and social needs) and/or for family caregivers. HCPs had to have knowledge about PN programs (e.g., healthcare professionals and administrators).

We used purposeful sampling to recruit participants (Johnson, 2014) throughout Toronto, Canada from October 2020 until November 2021. Participants were recruited through hospitals that had recently implemented patient navigator programs for older adults, community health and social service agencies, the local Alzheimer’s Society and geriatric care and memory clinics in the community. Purposeful sampling was used to get participants from a variety healthcare professional backgrounds and roles from various healthcare settings (i.e., hospital, community setting). We also purposefully sampled individuals who work with persons living with dementia and their caregivers, with varying degrees of familiarity with PN.

All interested participants were provided with a letter of information and consent form. Once participants had questions answered to their satisfaction and provided written consent to the research team, the first author scheduled the interviews at a date, time, and location convenient to the participant. Interviews occurred in-person (in a private area in a healthcare setting), through videoconferencing or via telephone, depending on the preference of the participant. Participants were not compensated for their time, as they participated in the context of their regular workday.

Data Collection

Re-consent was obtained verbally from all participants at the start of the interview. Participants were informed that they could end the interview or decline any questions at any point, even after consent was obtained. The first author, a female, PhD-trained qualitative health service post-doctoral researcher conducted the interviews, utilizing a semi-structured interview guide. To increase participant comfort in expressing candid opinions, none of the interviewed participates worked with the interviewer and most of the participants first met the interviewer when she reached out to schedule the interview. The semi-structured interview guide explored participants’ perceptions on existing patient navigator programs and their thoughts on health service navigation more broadly. Several questions were also specific to those who cared for individuals with dementia and/or their family caregivers. These questions explored whether they ever considered PN models of care for individuals with dementia at their organization, how such a program would impact their own workflows and their knowledge and opinions about the health and social care system in the context of dementia (See Table 1 for sample interview questions). All interviews were audio-recorded. Data was stored on a secure hospital server. Participants were recruited until data saturation was achieved following the constant iterative review of the interviews by the research team (Fusch & Ness, 2015).

Table 1.

Characteristics of Healthcare Professionals.

Participant Characteristic	Healthcare Professionals (n = 48) (%)
Gender
Male	8 (16.66)
Female	40 (83.33)
Employment setting
Community	27 (56.25)
Hospital	21 (43.75)
Job title
Administrator/manager	20 (41.66)
Social worker	14 (29.16)
Patient navigator	4 (8.33)
Registered nurse	3 (6.25)
Occupational therapist	2 (4.16)
Recreational therapist	1 (2.08)
Physiotherapist	1 (2.08)
Physician	1 (2.08)
Psychogeriatric therapist	1 (2.08)
Years of experience
1–5 years	13 (27)
6–10 years	16 (33.33)
11–19 years	11 (23)
20+ years	8 (16.66)

Analysis

Interviews were professionally transcribed verbatim and reviewed for accuracy by the first author. NVivo 12 software was used to organize and manage the data (Hilal & Alabri, 2013). The data were analyzed using qualitative descriptive content analysis (Vaismoradi et al., 2013). First, the first author read every transcript and made notes of first impressions. Data was collected and analyzed in an iterative manner during this phase of analysis. Next, the first author open coded all of the transcripts to summarize and describe the data. Finally, focus coding was used to identify and categorize themes in the data (Sandelowski, 2010) related to what is universal (i.e., applicable to any illness population) and what is illness-specific (i.e., what is specific to dementia) (Kokorelias et al., 2019). Throughout the coding process, the first author met regularly with the principal investigator to help develop and refine the coding scheme. The final coding scheme was confirmed when the first author and the principal investigator applied it to the same transcript and noted all important data were coded. The research team then reviewed the coded data over a series of meetings. During these meetings, the researchers compared findings within and between different roles. All conflicts in interpretation were resolved through discussion.

Results

A total of 63 interviews were conducted with 48 healthcare professionals. Sixteen participants were interviewed twice, and two participants were interviewed together. Interviews lasted approximately 60 min. Demographic characteristics are described in Table 2.

Table 2.

Characteristics of Healthcare Professionals.

Participant Characteristic	Healthcare Professionals (n = 48) (%)
Gender
Male	8 (16.66)
Female	40 (83.33)
Employment setting
Community	27 (56.25)
Hospital	21 (43.75)
Job title
Administrator/Manager	20 (41.66)
Social worker	14 (29.16)
Patient navigator	4 (8.33)
Registered nurse	3 (6.25)
Occupational therapist	2 (4.16)
Recreational therapist	1 (2.08)
Physiotherapist	1 (2.08)
Physician	1 (2.08)
Psychogeriatric therapist	1 (2.08)
Years of experience
1–5 years	13 (27)
6–10 years	16 (33.33)
11–19 years	11 (23)
20+ years	8 (16.66)

One overarching theme was identified, which was “Variability in the Support for Illness-Specific PN” (described in detail below). During analysis, it became very evident that participants varied in their justification for, or against, dementia-specific PN models of care. In addition, unique aspects to consider if navigators were to support individuals with dementia were identified and grouped into five themes. These distinguishing considerations are mentioned in the narratives throughout the next section of the results. All themes are illustrated with representative quotes, sourced by the participant occupation, work-setting, and ID number.

Overarching Theme: Variability in the Support for Illness-Specific PN

Navigating the health and social services system was described as a challenge for all older adult patient populations, such that participants believed that PN could be universally applicable (i.e., benefiting everyone). As such, the role of PN was seen as valuable for all patient populations, amongst all the participants. As one participant shared, “it shouldn’t matter what the person is diagnosed with, everyone deserves to have timely follow-up care, so PN helps all really” (Physician, Hospital, 29). Participants went on to describe that patients and family members often lack the skills related to accessing healthcare and social services, particularly out in the community (e.g., actively seeking information about accessing supportive care when needed). However, participants described the difficulty patients and family members have in obtaining these skills and inferred that PN would be a solution that could benefit any patient population. For example, many participants commented on the benefit having someone who worked across care settings that a patient may encounter.

“I’m not really familiar with the goals of PN, but I think because our system is so complex and there’s really no continuity, having any service or profession where they can call someone whether in acute care, rehab. or community is important, so if a patient navigator can do that for everyone then of course, any patient can benefit” (Occupational Therapist, Hospital, 24).

A few participants confused PN as being akin to discharge planning and thus also believed all participants would benefit, as they often noted inconsistencies in discharge plans between different providers in the hospital or a lack of community supports being in place to support older adults following discharge.

Despite noting benefits for all patient populations, some participants noted that given the origins of PN in cancer care, cancer navigation should be prioritized over a dementia-specific program, unless “research suggests otherwise” (Administrator, Hospital, 4). As one participant said,

“Well as we know, it began in cancer. People with other conditions often do get cancer too, so I really think if resources are a concern, we stick to cancer. Cancer is very complex and there is so much to navigate like diagnosis, treatment, re-occurring cancers, cancers spreading. It’s very different then say diabetes where hospital-to-home transitions generally look the same for everyone, whereas in cancer there’s so many nuances. […] people with dementia even get cancer too and that’s another nuance, so yeah, I’d argue for cancer-navigation then maybe a general program.” Administrator, Hospital, 26

Like the participant quoted above, many participants described the need to consider resources (e.g., human resources, availability of suitable navigators, funding programs) to adequately establish the need for suggesting illness-specific navigation, in general. As another participant shared, “ideally, yeah, of course we can have more navigators to have more specialized programs, but only if the resources are there. Like the fact that they need salaries, office space, and even navigators.” A few participants also noted that PN could be “easily applied to any older adult as long as we have enough navigators to support the caseload” (Manager, Community, 1).

Participants had mixed opinions on the need for illness-specific navigation given knowledge about different conditions. One participant described, “first, part of PN is also education to patients about their illness. There’s a need for illness specific education” (Social Worker, Community, 8). However, another participant also noted, “I guess the navigators do referrals to providers who are experts in areas, so I think as long as the navigator has enough knowledge of where they can find information to relay to patients, illness-specific education will always be part of navigation” (Manager, Community, 10). Some participants also highlighted that many older adults, including those with dementia, live with co-existing conditions, making illness-specific navigation more complex and negating the need for an illness-specific navigator. As such, participants noted that navigators would need to have a set of knowledge and expertise that is broad enough to be able to comprehensively address the many health concerns and life contexts patients might be experiencing but paired with a set of knowledge and expertise that is specific to the predominant illness concern (e.g., dementia).

Whereas some participants dismissed the need for a dementia-specific navigation program, other participants were very explicit about the need for illness-specific programs. Participants who supported the need for illness-specific programs largely described that “it would be too difficult for navigators to know how to intensely support patients with every disease or illness.” (Social Worker, Community, 6). For example, participants noted that older adults and their families would benefit from knowing wait times and fees, in addition to knowing what the available resources are.

Unique Considerations for Dementia PN

Theme 1: Taking Part in Ongoing Training

As inferred from our overarching theme (Variability in the Support for Illness-Specific PN), participants described that any patient navigator working with individuals living with dementia and/or their family caregivers would require unique training related to the disease that would include techniques to address unique, dementia-related needs and behaviors (including how to appropriately respond to behaviors) and strategies to communicate with persons who are cognitively impaired. For example, participants noted that persons with dementia will experience frequent hospitalizations that they may not be able to understand and the need for navigators to know how to effectively communicate care plans to the individual in the absence of a formal caregiver. Participants almost unanimously agreed that supporting family caregivers of persons with dementia would require more effort as “we know, caregiver burden could be much higher when there’s a dementia” (Manager, Community, 47).

Participants also noted that training for navigators would have to be ongoing as to increase self-confidence in their skills avoid therapeutic nihilism or the negative stigma directed towards individuals with dementia. In addition, training was cited as important to educate both HCPs and family caregivers.

“They need ongoing training. They will burn out. They need to know they are supported, they need to continuously find ways to overcome new challenges. When you meet someone with dementia, you have met just one person with that type of dementia. Nuanced needs will come up, new agitations, new difficulties that can make you resent your client. And frankly, family caregivers are going to depend on navigators to educate them. Isn’t PN about education?” (Manager, Community, 43)

Theme 2: Addressing Stigma

The stigmatized nature of dementia also was discussed in the context of a navigator needing to help formal and family caregivers as well as individuals overcome the stigma of living with dementia. Participants largely noted the role a navigator could have in overcoming stigma at the time of diagnosis, but a few noted that this stigma would prevail throughout the care continuum. As one participant explained, “misunderstanding is everywhere. Someone can be trying to advocate for a service and they will be thought of as unable to make a decision or self-care” (Physiotherapist, Hospital, 35).

Participants also noted that navigators would need to work in the context of cultural and linguistic barriers. As one participant shared, “unlike some terms for other conditions, some cultures don’t even have a word for dementia. And that creates even more stigma for people diagnosed. So a navigator is going to need to be able to navigate all kinds of stigma, unlike say cancer” (Nurse, Community, 39).

Lastly, participants noted that sometimes HCPs do not know how to best care for someone with dementia, or even recognize that a cognitive impairment is present, if a patient or family member does not disclose this. Therefore, participants noted that sometimes patients do not adhere to their care plans (if provided) or follow medical guidance. Thus, HCPs believed that the patient navigator would have to help their clients overcome this challenge. As one participant shared, “we don’t want them all to be seen as cranky old people when really there can be a reason they aren’t compliant” (Social Worker, Rehabilitation, 30).

Theme 3: Focusing on Quality of Life

Participants described that a PN program that included clients living with dementia would need to focus on helping individuals “live with dementia, knowing there’s no cure” (Manager, Community, 1). One participant shared,

“In conditions like cancer, patient navigators are there for the screening process and through treatment and the goal is eliminating disease and preventing fatality. Here, we know dementia is diagnosed late so they likely don’t need help there, they already have the diagnosis and what they do need is someone to keep them safe, active, engaged, you know, improve quality of life” (Nurse, Community, 36).

Participants also noted that supporting family caregivers’ quality of life was equally of important consideration for navigators working with persons with dementia. Participants highlighted that while the patient navigator could not replace the family caregivers’ role, they had to ensure the program did not add work to the family caregiver. Moreover, participants acknowledged that the navigator role would have to support caregivers as their experiences and role evolve over the dementia illness continuum.

Theme 4: Defining Home

Moreover, participants noted that for individuals with dementia, “home would look very different” (Recreation Therapist, Community, 52) and thus, transitions from hospital to home would need to encompass different discharge settings including retirement homes, supportive housing, moves into family caregivers’ homes and long-term care placements. Participants noted that due to this there are even more nuances in discharge planning that navigators can support including help older adults and their families understand the process, including privatized options in addition to government-funded services.

“Of course dementia warrants its own navigation program. Just even think of transitions home. Hospitalizations often lead to different homes for when you have dementia, like long-term care. And then that brings the issue of finding one, accessing one, do you pay for one? Wait? Does mom move in with you?” (Administrator, Community, 49).

Many of the participants noted that the move to long-term care is often a distinct and difficult transition for individuals living with dementia. Participants noted that individuals living with dementia and their family caregivers would require even greater support once in long-term care.

Theme 5: A Continuous Process of Support

Participants described that due to the progressive and long-lasting nature of dementia, navigators working with clients with dementia and their families should consider extended follow-up care following hospital discharge. Some participants noted that it would be difficult to predict the trajectory of dementia and anticipate future care needs and thus, navigation roles need to be progressive along with the illnesses they are supporting. Participants also noted that usually transitions in care needs involve a “catalyst, like a new co-morbidity diagnosis or a crisis situation like wandering” (Social Worker, Community, 6).

Given the essential role of family caregivers in supporting the care of individuals with dementia, participants noted that the ongoing support provided by navigators be family-centered in nature and consider how dementia diagnoses continue to impact families. One participant explained, “we focus on caregivers, but sometimes that role changes over a dementia or gets passed down generations so really there is a need to look at family contexts and have the navigator empowered to do so” (Social Worker, Hospital, 20).

Discussion

The current study aimed to explore the need for dementia-specific PN from HCPs who have experiences with implemented PN programs for older adults and/or who provide support to older adults with dementia and would be able to influence the implementation of future PN programs at their organization. In total, we identified one overarching theme, “Variability in the Need for Illness-Specific PN” and five themes that highlight unique considerations when providing PN to individuals with dementia: (1) Taking Part in Ongoing Training, (2) Addressing Stigma, (3) Focusing on Quality of Life, (4) Defining Home, and (5) A Continuous Process of Support. These themes provide preliminary insights into the conceptual differences about the need for illness-specific PN in the healthcare system and the areas within PN where healthcare professionals are encouraged to find consensus. However, these themes can be further explicated; thus, perceptions regarding the need for dementia-specific PN programs in an integrated healthcare system need to be better understood.

Despite a lack of consensus around the need for dementia-specific PN, participants discussed considerations for caring for individuals living with dementia. For example, if programs were to be illness-specific, the requirement of a formal diagnosis of dementia may be a barrier for individuals who have not yet obtained assessment and diagnosis. Within the context of dementia, diagnoses are often made late into the illness trajectory and in turn, appropriate resources for support pre- and post-diagnosis are often not offered to individuals living with dementia. Multiple reasons for delayed diagnosis exist including a lack of knowledge of dementia symptoms from individuals, their caregivers and HCPs and a lack of, or unclear pathways to diagnostic services (Parker et al., 2020). Race and ethnicity have also played a role in a delayed diagnosis (Lin et al., 2021). While Canada’s Alzheimer Society’s First Link™ program connects individuals living with dementia and their caregivers with support services following referrals by health professionals with demonstrated success (McAiney et al., 2012), requiring a diagnosis may hinder equitable access to PN for individuals living with dementia. Instead of a formal diagnosis, PN programs should consider self-referrals as well as training navigators to be aware of cognitive decline when providing care to adults (e.g., accepting referrals from providers where dementia is queried but not yet confirmed), along with culturally-appropriate approaches to discussing diagnostic testing for dementia (Gove et al., 2021). PN can help support individuals with various cognitive impairments throughout their assessment and diagnosis journey. PN has been found to overcome barriers faced by patients with cancer during screening and diagnosis (Freeman, 2013; Percac-Lima et al., 2018). In addition to support during diagnosis, PN can offer post-diagnoses support that may be unique in the context of dementia such as understanding the progressive nature of the illness, changes in familial roles, the process of acceptance and overcoming stigma (Kontos et al., 2020; Nguyen & Levkoff, 2020).

The recent shift from hospital to community-based care has highlighted the important contribution navigators can help make to the ongoing care of individuals living with the dementia and their facilitation of a family-centered care approach to care. Our findings suggest that HCPs conceptualize home as being unique for people living with dementia and signify that ongoing support is required from navigators across the illness trajectory, including across transitions in living arrangements. Changes to broaden definitions of home to include transitions such as to a nursing home or to a relative’s home within current models of hospital-to-home transitional programs are necessary to optimize support provided to individuals living with dementia and caregivers across the illness and caregiving trajectory. In addition, our findings highlight how the PN role should evolve over the course of the dementia trajectory. For example, participants highlighted those navigators could help persons with dementia overcome stigma and focus on quality of life as the illness progresses. Participants also highlighted that the unpredictable nature of dementia could mean that home support needs were not anticipated during hospitalizations and thus, navigators should be available to help when unexpected needs do arise. Although previous literature suggests dementia caregivers also have support needs that cross the care continuum (Kokorelias et al., 2020), PN programs for adults with complex care needs tend to be specific to particular parts of the illness trajectory or time-limited (Kokorelias, Gignac, et al., 2021). In a recent grounded theory study, caregivers to persons with Alzheimer’s disease identified the need for professional navigational support to assist as their service and support needs evolve across the caregiving trajectory (Kokorelias, Gignac, et al., 2021). New and emerging PN programs to support persons with dementia are encouraged to provide support over long periods of time.

Our findings have highlighted that consensus building is still needed to establish whether there is the need for dementia-specific PN programs, as well as the inclusion of scientific evidence demonstrating the effectiveness of dementia-specific PN programs to improve caregiver, patient, and health system outcomes in comparison to non-illness specific PN programs. According to the Consolidated Framework for Implementation Sciences (CFIR), an evidence base suggesting or refuting the need for a program has been found to influence implementation of novel healthcare services (Damschroder et al., 2009). Therefore, future research should focus on establishing consensus amongst knowledge and end users to help inform illness-specific PN programs or universal (applicable to all) programs. One possible activity for consensus building could include including a heterogeneous panel of decision-makers, clinicians, people who have been supported by patient navigation models of care, and researchers in a Delphi process to gain consensus. If consensus cannot be reached, future research is needed to explore what elements make a patient navigator program illness-specific to ultimately inform future PN programs.

Nonetheless, our findings highlight unique dementia-specific considerations for PN. Dementia-specific PN programs exist. While some of the existing functions of dementia navigation align with the dementia-specific considerations put forth by our participants (e.g., referrals to resources, ongoing monitoring of cognitive impairment), to our knowledge, dementia-specific navigation does not provide consideration to the stigmatized nature of dementia. Existing and future PN programs are encouraged to consider stigmatization of illnesses (e.g., dementia, mental health) and the unique support that they can provide their clients. From a broader health system-level perspective, it is also important to consider how the multi-level healthcare professionals involved in PN, including the program developers, managers, referring clinicians and associated community-support agencies, can help to de-stigmatize dementia through person and family-centered approaches to care in their own work (Galvin et al., 2020; Zhang, 2018). Future research incorporating the perspectives of older adults with dementia and their caregivers to get their thoughts on dementia-specific PN programs is encouraged. The scarce existing research thus far has identified that the addition of navigators to an older adults’ care team increases a patient’s overall satisfaction of their treatment (Kokorelias et al., 2022). Moreover, future research should also consider the role that PN may have for older adults with dementia with no family caregiver support, as much of the existing patient navigation work has focused on patient and caregiver needs.

Limitations

While we recruited a diverse group of participants to ensure a breadth of perspectives on PN for dementia, we were not able to get representation from all stakeholder groups influential of dementia care such as primary care providers and geriatricians. This study also only included the perspectives of individuals from one urban city within Canada. As consistent with key informant studies, our study aimed to gain preliminary insight into issues related to the unique need for PN programs for individuals living with dementia, and therefore, future research with additional knowledge (e.g., geriatricians) and end user groups (e.g., caregivers, persons with dementia) is required to gain more in-depth understanding of designing and implementing optimal PN programs for individuals living with dementia. Lastly, the cost-effectiveness of illness-specific PN in comparison to universal patient navigator programs should be studied to provide further insight.

Conclusion

To our knowledge, this is the first Canadian study to provide initial insights into the unique considerations of PN programs for individuals living with dementia. Further research is needed to establish whether illness-specific PN programs are warranted and if so, strategies to support their optimal implementation and sustainability. Participants highlighted the importance dementia-specific considerations within any PN program that provides support to individuals living with dementia and/or their caregivers. Findings can inform the development and testing of new PN programs that address gaps in dementia care and provide the evidence desired by specific stakeholder groups to support or refute the need for dementia-specific patient navigators. Findings from this key informant study may also be used as a starting point for a larger study involving additional stakeholder groups, such as caregivers and individuals living with dementia to further explore the development of PN programs to enhance dementia care systems.

Supplemental Material

Supplemental Material - Considering a Need for Dementia-Specific, Family-Centered Patient Navigation in Canada

Supplemental Material for Considering a Need for Dementia-Specific, Family-Centered Patient Navigation in Canada by Kristina M. Kokorelias, Roula Markoulakis and Sander L. Hitzig in Journal of Applied Gerontology

Footnotes

Acknowledgments

The research team is grateful to the participants who shared their time and expertise make this research possible.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Kristina Kokorelias is supported by the Slaight Family Foundation and the Alzheimer’s Society of Canada Quality of Life: Post-doctoral Research Competition (#22-18). The views expressed are of the authors and the funding entity accepts no responsibility for them.

ORCID iDs

Kristina M. Kokorelias

Sander L. Hitzig

Supplemental Material

Supplemental material for this article is available in online.

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