Introduction
Delivery of high-quality and age-appropriate care for the estimated 3.9 million people living with young-onset dementia (YOD; with symptom onset prior to 65 years of age) (Hendriks et al., Reference Hendriks2021) is a global challenge. In YOD, symptom onset occurs “off-time” and earlier than is expected in the population. As such, most dementia care is designed for older people and is integrated into existing elder and/or health care systems (Draper and Withall, Reference Draper and Withall2016). It is well established that specialized services designed for and delivered to meet the unique experience of YOD are most effective and preferred by people with YOD. For example, Stamou, La Fontaine, Gage, et al. (Reference Stamou, La Fontaine and Gage2021) identified that specialized YOD services performed better on all indicators of care quality than other care providers (e.g. general practitioners). People with YOD and their families consistently report a preference for services designed with their unique needs in mind (Bannon et al., Reference Bannon, Reichman, Wang, Uppal, Grunberg and Vranceanu2022; Carter et al., Reference Carter, Oyebode and Koopmans2018; Cations et al., Reference Cations, Day, Laver, Withall and Draper2022; Mayrhofer et al., Reference Mayrhofer2018). Indeed, many people with YOD and their families choose not to access a dementia service recommended to them because of concerns about the service being able to meet their needs (Cations et al., Reference Cations2017).
Barriers to the delivery of YOD-specific health and care services occur at the individual, provider, and system levels. For example, delayed help seeking can occur due to fear, stigma, and lack of insight into impairments (O’Malley et al., Reference O’Malley, Carter, Stamou, LaFontaine, Oyebode and Parkes2021). Health and social care professionals rarely receive training about YOD, and most provide care to a person with YOD only infrequently without ready access to mentors with expertise in the area (Couzner et al., Reference Couzner2022). At the system level, establishing the cost-effectiveness of specialized services can be challenging especially where people with YOD are spread across a large geographical area (Burkinshaw et al., Reference Burkinshaw, Tsourtos and Cations2023). Because YOD care is delivered across services (and in some countries, sectors), fragmentation can limit care quality (Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Even where adequate funding is available, people with YOD face difficulties finding appropriate services with which to use their funding (Cations et al., Reference Cations, Day, Laver, Withall and Draper2022). These and other factors mean that access to specialized YOD services is patchy and inequitable in most countries (Bakker et al., Reference Bakker, Verboom and Koopmans2021).
Missing from the literature has been an exploration of factors that may enable the establishment and sustainment of YOD-specific services. This gap in the literature leaves service designers and funders to implement change without evidence-based guidance. As such, Oyebode et al.’s (Reference Oyebode2023) recent qualitative study exploring key facilitating factors for professional engagement in delivering YOD-specific services in the United Kingdom is well timed.
Chief among the themes identified by Oyebode et al. (Reference Oyebode2023) is that an experienced and committed champion of change is very often required to trigger the establishment of YOD-specific services. Clinical champions can be credited for many advances in healthcare delivery that are now embedded in systems across the world (Santos et al., Reference Santos, Graham, Lalonde, Demery Varin and Squires2022). Evidence from implementation science literature shows that the adoption of innovation in healthcare is improved when devoted champions facilitate implementation, though the quality of evidence remains mixed (Santos et al., Reference Santos, Graham, Lalonde, Demery Varin and Squires2022). Theoretical models suggest that champions promote the engagement of their peers in a cause and build buy-in for change (Morena et al., Reference Morena, Gaias and Larkin2022). They help to shape positive attitudes toward the planned change (and intention for action) by exerting their “power” cultivated via being trustworthy, credible, and well-liked. This can facilitate a shift in professional perceptions about what should be considered “core business” (Morena et al., Reference Morena, Gaias and Larkin2022).
Given the value of clinical champions in establishing high-quality YOD care services, determining how to identify and/or develop such champions is the critical next step. Effective champions tend to have excellent communication and interpersonal skills, can develop meaningful relationships with their peers, retain high levels of technical expertise, and may have some prior experience with successfully implementing change (even if only minor; Miech et al., Reference Miech, Rattray, Flanagan, Damschroder, Schmid and Damush2018). They also have usually worked within a service or sector for a long time, allowing them to understand how the service works and identify the available levers for change (Morena et al., Reference Morena, Gaias and Larkin2022). In the recruitment, identification, and training of champions, attention should be paid to the relationships that exist within services. Champions are often not in formal positions of power but rather hold informal “power” based on their trust and influence (Valente and Pumpuang, Reference Valente and Pumpuang2007). As noted by Oyebode et al. (Reference Oyebode2023), potential champions may also need empowerment to recognize their own ability to enact change (Morena, et al., Reference Morena, Gaias and Larkin2022).
In the context of YOD care, cultivating champions may be assisted by ensuring that motivated professionals working within existing services have access to existing champions working in other services. A “hub-and-spoke” model may be most appropriate where it is not feasible to establish large service centers in all regions. In this model, remote service providers (“spokes”) have access to expertise and mentoring from professionals working at centralized and well-developed specialized YOD services (“hubs”) (Bakker et al., Reference Bakker, Verboom and Koopmans2021; Cations et al., Reference Cations2021). The development of strong and active networks of YOD-informed professionals can promote the sustained enthusiasm required to implement change (Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Within local areas, open and regular communication between potential YOD champions can promote service integration and streamlined care (Stamou, La Fontaine, O’Malley, et al., Reference Stamou, La Fontaine and O’Malley2021; Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Potential champions may also need resources to build their knowledge and skills in driving and implementing change (Bonawitz et al., Reference Bonawitz2020). These resources should include access to patient and public involvement, as lived-experience voices can empower champions, promote their enthusiasm, and influence leadership decision making (Pizzo et al., Reference Pizzo, Doyle, Matthews and Barlow2015).
Of course, the need for champions implies that specialized YOD services continue to be delivered outside “business as usual” and beyond the remit of a universal healthcare system. Indeed, access to specialized services remains the exception rather than the norm for most people with YOD (Bakker et al., Reference Bakker, Verboom and Koopmans2021). A major consequence is inequity in care and, by extension, outcomes. Inequity will be present anywhere that a passionate clinical champion is needed to drive the implementation of a service for which there is clinical demand and an established evidence base. Oyebode et al. (Reference Oyebode2023) also note the critical risk to the sustainability of specialized services where they are reliant on individual champions and time-limited funding. This message is echoed by Burkinshaw et al. (Reference Burkinshaw, Tsourtos and Cations2023), who describe the inherent tension between the priorities of policy makers and service planners (e.g. cost-effectiveness and efficiency of care) and the needs of people with YOD (e.g. thorough and often time-intensive assessment and care). Striking a balance in this context will be crucial toward the goal of embedding specialized YOD services into “business as usual.”
Oyebode et al. (Reference Oyebode2023) present elegant examples of how YOD-specific services have been established and maintained within existing health and social care systems. Scaling these achievements out to other regions and settings will in part rely on the continued dedication of existing and emerging clinical champions. Future research that examines the characteristics of clinical champions in YOD care, as well as factors that empower them to step into action, will help to drive the expanded availability of best practices to all those living with YOD.
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Introduction
Delivery of high-quality and age-appropriate care for the estimated 3.9 million people living with young-onset dementia (YOD; with symptom onset prior to 65 years of age) (Hendriks et al., Reference Hendriks2021) is a global challenge. In YOD, symptom onset occurs “off-time” and earlier than is expected in the population. As such, most dementia care is designed for older people and is integrated into existing elder and/or health care systems (Draper and Withall, Reference Draper and Withall2016). It is well established that specialized services designed for and delivered to meet the unique experience of YOD are most effective and preferred by people with YOD. For example, Stamou, La Fontaine, Gage, et al. (Reference Stamou, La Fontaine and Gage2021) identified that specialized YOD services performed better on all indicators of care quality than other care providers (e.g. general practitioners). People with YOD and their families consistently report a preference for services designed with their unique needs in mind (Bannon et al., Reference Bannon, Reichman, Wang, Uppal, Grunberg and Vranceanu2022; Carter et al., Reference Carter, Oyebode and Koopmans2018; Cations et al., Reference Cations, Day, Laver, Withall and Draper2022; Mayrhofer et al., Reference Mayrhofer2018). Indeed, many people with YOD and their families choose not to access a dementia service recommended to them because of concerns about the service being able to meet their needs (Cations et al., Reference Cations2017).
Barriers to the delivery of YOD-specific health and care services occur at the individual, provider, and system levels. For example, delayed help seeking can occur due to fear, stigma, and lack of insight into impairments (O’Malley et al., Reference O’Malley, Carter, Stamou, LaFontaine, Oyebode and Parkes2021). Health and social care professionals rarely receive training about YOD, and most provide care to a person with YOD only infrequently without ready access to mentors with expertise in the area (Couzner et al., Reference Couzner2022). At the system level, establishing the cost-effectiveness of specialized services can be challenging especially where people with YOD are spread across a large geographical area (Burkinshaw et al., Reference Burkinshaw, Tsourtos and Cations2023). Because YOD care is delivered across services (and in some countries, sectors), fragmentation can limit care quality (Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Even where adequate funding is available, people with YOD face difficulties finding appropriate services with which to use their funding (Cations et al., Reference Cations, Day, Laver, Withall and Draper2022). These and other factors mean that access to specialized YOD services is patchy and inequitable in most countries (Bakker et al., Reference Bakker, Verboom and Koopmans2021).
Missing from the literature has been an exploration of factors that may enable the establishment and sustainment of YOD-specific services. This gap in the literature leaves service designers and funders to implement change without evidence-based guidance. As such, Oyebode et al.’s (Reference Oyebode2023) recent qualitative study exploring key facilitating factors for professional engagement in delivering YOD-specific services in the United Kingdom is well timed.
Chief among the themes identified by Oyebode et al. (Reference Oyebode2023) is that an experienced and committed champion of change is very often required to trigger the establishment of YOD-specific services. Clinical champions can be credited for many advances in healthcare delivery that are now embedded in systems across the world (Santos et al., Reference Santos, Graham, Lalonde, Demery Varin and Squires2022). Evidence from implementation science literature shows that the adoption of innovation in healthcare is improved when devoted champions facilitate implementation, though the quality of evidence remains mixed (Santos et al., Reference Santos, Graham, Lalonde, Demery Varin and Squires2022). Theoretical models suggest that champions promote the engagement of their peers in a cause and build buy-in for change (Morena et al., Reference Morena, Gaias and Larkin2022). They help to shape positive attitudes toward the planned change (and intention for action) by exerting their “power” cultivated via being trustworthy, credible, and well-liked. This can facilitate a shift in professional perceptions about what should be considered “core business” (Morena et al., Reference Morena, Gaias and Larkin2022).
Given the value of clinical champions in establishing high-quality YOD care services, determining how to identify and/or develop such champions is the critical next step. Effective champions tend to have excellent communication and interpersonal skills, can develop meaningful relationships with their peers, retain high levels of technical expertise, and may have some prior experience with successfully implementing change (even if only minor; Miech et al., Reference Miech, Rattray, Flanagan, Damschroder, Schmid and Damush2018). They also have usually worked within a service or sector for a long time, allowing them to understand how the service works and identify the available levers for change (Morena et al., Reference Morena, Gaias and Larkin2022). In the recruitment, identification, and training of champions, attention should be paid to the relationships that exist within services. Champions are often not in formal positions of power but rather hold informal “power” based on their trust and influence (Valente and Pumpuang, Reference Valente and Pumpuang2007). As noted by Oyebode et al. (Reference Oyebode2023), potential champions may also need empowerment to recognize their own ability to enact change (Morena, et al., Reference Morena, Gaias and Larkin2022).
In the context of YOD care, cultivating champions may be assisted by ensuring that motivated professionals working within existing services have access to existing champions working in other services. A “hub-and-spoke” model may be most appropriate where it is not feasible to establish large service centers in all regions. In this model, remote service providers (“spokes”) have access to expertise and mentoring from professionals working at centralized and well-developed specialized YOD services (“hubs”) (Bakker et al., Reference Bakker, Verboom and Koopmans2021; Cations et al., Reference Cations2021). The development of strong and active networks of YOD-informed professionals can promote the sustained enthusiasm required to implement change (Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Within local areas, open and regular communication between potential YOD champions can promote service integration and streamlined care (Stamou, La Fontaine, O’Malley, et al., Reference Stamou, La Fontaine and O’Malley2021; Day et al., Reference Day, Couzner, Laver, Withall, Draper and Cations2022). Potential champions may also need resources to build their knowledge and skills in driving and implementing change (Bonawitz et al., Reference Bonawitz2020). These resources should include access to patient and public involvement, as lived-experience voices can empower champions, promote their enthusiasm, and influence leadership decision making (Pizzo et al., Reference Pizzo, Doyle, Matthews and Barlow2015).
Of course, the need for champions implies that specialized YOD services continue to be delivered outside “business as usual” and beyond the remit of a universal healthcare system. Indeed, access to specialized services remains the exception rather than the norm for most people with YOD (Bakker et al., Reference Bakker, Verboom and Koopmans2021). A major consequence is inequity in care and, by extension, outcomes. Inequity will be present anywhere that a passionate clinical champion is needed to drive the implementation of a service for which there is clinical demand and an established evidence base. Oyebode et al. (Reference Oyebode2023) also note the critical risk to the sustainability of specialized services where they are reliant on individual champions and time-limited funding. This message is echoed by Burkinshaw et al. (Reference Burkinshaw, Tsourtos and Cations2023), who describe the inherent tension between the priorities of policy makers and service planners (e.g. cost-effectiveness and efficiency of care) and the needs of people with YOD (e.g. thorough and often time-intensive assessment and care). Striking a balance in this context will be crucial toward the goal of embedding specialized YOD services into “business as usual.”
Oyebode et al. (Reference Oyebode2023) present elegant examples of how YOD-specific services have been established and maintained within existing health and social care systems. Scaling these achievements out to other regions and settings will in part rely on the continued dedication of existing and emerging clinical champions. Future research that examines the characteristics of clinical champions in YOD care, as well as factors that empower them to step into action, will help to drive the expanded availability of best practices to all those living with YOD.
Conflicts of interest
None.
Source of funding
MCa is supported by The Hospital Research Foundation Early-Career Fellowship (ECF-2019-33-25271) and a Medical Research Future Fund / National Health and Medical Research Council Investigator Grant (GNT 1194084).