Abstract
Background:
Person-centered care is considered beneficial for persons with dementia.
Objective:
To evaluate the impact of a person-centered knowledge translation intervention on the quality of healthcare and outcomes for persons with dementia.
Methods:
Over nine months, sub-acute hospital nursing, allied health, and medical staff (n = 90) participated in online and/or face-to-face person-centered education and were supported by senior nursing, allied health, and medical staff champions (n = 8) to implement person-centered healthcare. The quality of healthcare service, ward climate and care delivery were evaluated pre/post study intervention. In the week following hospital admission (Time 1) and week of discharge (Time 3), agitation incidence (co-primary outcome) was assessed in participants with dementia (n = 80). Participant delirium (co-primary outcome), accidents/injuries, psychotropic medicines, length of stay, readmission and discharge destination (secondary outcomes) were compared with a retrospective group (n = 77) matched on demographics, cognition and function in activities of daily living.
Results:
Improvements occurred post-intervention in service quality by 17.5% (p = 0.369, phi = 0.08), ward climate by 18.1% (p = 0.291, phi = 0.08), and care quality by 50% (p = 0.000, phi = 0.37). Participant agitation did not change from Time 1 to Time 3 (p = 0.223). Relative to the retrospective group, significant reductions occurred in participant delirium (p = 0.000, phi = 0.73), incidents/injuries (p = 0.000, phi = 0.99), psychotropic medicine use (p = 0.030, phi = 0.09), and hospital readmissions within 30 days (p = 0.002, phi = 0.25), but not in discharge to home (p = 0.171).
Conclusions:
When person-centered healthcare knowledge is translated through staff education and practice support, persons with dementia can experience improved healthcare services and clinical outcomes, while healthcare services can benefit through reductions in unplanned service use.
Keywords
INTRODUCTION
For the one in four people living with dementia who are admitted to hospital [1], the experience can be extremely challenging for them and their carers [2]. Challenges for the person include separation from the people and places which represent safety and familiarity [3], receiving healthcare from persons who have little if any knowledge of their life story and unique psychosocial needs [4], exposure to over and/or under-stimulating healthcare environments [5], and expectations being placed on them that are difficult to achieve [6]. The presence of dementia can complicate treatment, care, and outcomes for the person [7], and the person is likely to experience iatrogenic harms including delirium, falls, dehydration, malnutrition, decline in physical and cognitive function, and infections [8, 9]. There is a five-fold higher mortality rate for persons with dementia compared to older adults without dementia during hospitalization [10]. Therefore, the person with dementia requires specialized care, treatment, and support to keep them safe during a hospital stay [2, 11], which can occur with person centered care [4, 12].
Healthcare guidelines promote the Kitwood [13] model of person-centered care in supporting the person with dementia who exhibits changed behavior such as agitation, aggression, and refusal of treatment and/or care [2, 15]. The socio-psychological theory of personhood in dementia [16] is the cornerstone of the Kitwood model [13], where the individual’s personhood and well-being are prioritized in care and treatment interactions [2]. Systematic reviews and meta-analyses of the Kitwood [13] model provide substantial evidence of its applicability and effectiveness in community, residential and acute healthcare contexts [17–19]. This person-centered care model is associated with significantly improved outcomes for persons with dementia, including reductions in agitation (p = 0.003), delirium (p = 0.06), and accidents and injuries (p = 0.05), and improvements in function (p = 0.05), well-being (p = 0.002), and care quality (p = 0.01) [19]. These outcomes are beneficial for the person and their family/carer, and they represent a cost benefit for health services [20, 21].
Implementation of the Kitwood [13] model requires health service executive, managerial, and clinical leader support [22], including investment in person-centered care champions and ensuring that champions have regular opportunities to provide staff leadership and support in person-centered care [23]. Clinical and managerial staff require education in the person-centered care model [15], and the organization must address a workplace culture that favors system operations over person-centered care and treatment [19, 24]. Person-centered systems require consistent staffing and cessation of unnecessary staff rotations and bed moves for persons with dementia [3, 5], and policies and procedures that support the person’s healthcare rights, such as participation in decisions regarding care, treatment, discharge, and transfers [11, 25].
In fulfillment of these requirements, everyone providing healthcare to the person with dementia needs to be involved in the process [12]. A knowledge translation approach involving co-production, capacity-building and diffusion of person-centered care knowledge and skills can assist [26, 27]. The ‘knowledge into action’ process characterized by the Canadian Institute for Health Research [28] is an effective way of mobilizing the resources that are required to lead change in the health system, so that the person-centered model of care represents a strategic fit and priority for the service [26]. As well, healthcare staff need the capability, opportunity, and motivation to embrace person-centered practice change, which requires that senior healthcare staff enable and accelerate implementation and remove barriers [29].
Within a knowledge translation framework, this research study aimed to implement the Kitwood [13] person-centered care model in the sub-acute hospital setting, and to evaluate the model’s impact on quality of health services, care quality and clinical outcomes for persons with dementia.
MATERIALS AND METHODS
Design
In a pre/post-intervention design, the quality of healthcare services, quality of care delivery and clinical outcomes for persons living with dementia (intervention group), were evaluated. Clinical outcomes for the intervention and a matched comparison group were compared.
Study site and participants
The study was undertaken in a 35 bed sub-acute, aged care rehabilitation hospital, located in Sydney, Australia. The hospital provided specialized and comprehensive in-patient care for older people who required a longer length of stay than acute care to rehabilitate, or recover, from a major health event.
Participants were persons living with dementia aged sixty years and above, with a documented diagnosis of dementia and/or a Montreal Cognitive Assessment (MoCA) [30] score < 20, stable co-morbidities, not on an end-of-life pathway and able/proxy able to provide informed consent in English. Non eligibility included presence of an active delirium at time of recruitment and unstable or poorly controlled comorbidities that would likely confound outcomes.
Sample size and sampling
Sample size calculations were informed by previous research in an acute hospital [23] and a meta-analyses of person-centered care trials across different healthcare settings [17–19]. A sample size of 152 (76 per participant group) was required for the intervention group to detect a difference in pre/post-intervention mean score of 3 (5% improvement) in agitation (Cohen-Mansfield Agitation Inventory (CMAI) [31], and to reduce delirium incidence by 30% (p = 0.04) (Confusion Assessment Method, CAM) [32] when compared to the comparison group matched on age, cognition (MoCA) [30] and the Functional Independence Measure (FIM) [33], with 80% power at two tailed alpha of 0.05, assuming a standard deviation score of 6 and within person correlation of 0.6. In the first year of the COVID-19 pandemic and prior to study commencement, the number of eligible persons with dementia admitted annually to the hospital was 108. Allowing for 15% drop out of 108 potentially eligible participants, the recruitment targets were 80 in each of the intervention and the comparison groups.
Participant recruitment
Participant recruitment and consent procedures adhered to approved health service and university Human Research Ethics Committee (HREC) procedures (REGIS: 23 July 2021/ETH00755, 2021/ETH11258, SSA approval 02092021). Three trained research personnel recruited, consented, and obtained healthcare service and participant data, in accordance with HREC-approved procedures.
Study intervention
The RE-AIM (Reach, Adoption, Implementation, Effectiveness, Maintenance) knowledge translation framework [34] was applied to evaluate the person-centered care intervention. An expert advisory group (EAG) comprised of persons living with dementia and their carers, dementia care clinicians, managers and policy advisors, and researchers with expertise in translation-to-practice methodology, provided guidance in developing and implementing the person-centered care intervention from its inception to its conclusion.
Procedures included establishing project governance and networks to guide person-centered care education, practice, and evaluation of outcomes across the medical, nursing, and allied health clinical streams. The knowledge, skills and influence of senior hospital clinicians, experienced educators, person-centered care champions and team managers were harnessed in driving desired practice change. Financial and educational resources were allocated for senior staff and champion leadership of the project. A hospital-based project steering committee provided oversight to project implementation and an EAG provided advice on strategies for encouraging staff engagement with the person-centered care intervention. Regular champion meetings with the hospital executive and managers, and the project team, to discuss progress of the person-centered care intervention provided the champions with additional support.
The evidence-based person-centered care intervention which included staff education and practice support [23], was informed by Loveday, Kitwood, and Bowe [35] and was adapted to the educational needs of sub-acute hospital clinicians. The intervention group participants with dementia were provided with person-centered care from March 2022 to April 2023. As the intervention aimed to support staff learning and application of person-centered care and treatment across nursing, allied health, and medicine, the VIPS framework [36] was used to guide staff education and practice support for person-centered care. The VIPS is a useful framework for embedding person-centered care at the system-level, based on the following foundations: V, valuing and respecting the person with dementia and those who care for them; I, treating people with dementia as sentient and sensate individuals with unique needs; P, considering the service from the perspective of the person with dementia and validating the person’s subjective experience; and S, creating a positive social and psychological environment in which the person with dementia can experience well-being through positive relationships [36].
The person-centered care intervention was designed to assist clinical staff in knowing how to meet the holistic healthcare needs of persons living with dementia, including their personhood (identity, beliefs, values, self-respect, dignity), autonomy in things that matter to them (choice and decision-making), well-being and positive relationships. Education included case studies, critical reflection, problem-solving and discussion group activities, and DVD clips of person-centered and non-person-centered care. Examples included behavioral changes occurring for person living with dementia in the hospital setting, with practical strategies suggested to reduce social-psychological factors associated with changed behaviors and to support the person during and following these occurrences.
The education program comprised 20 hours of face-to-face training of eight staff champions (two nursing, five allied health, one medical) in the Kitwood [13] person-centered model, guided by the VIPS [36]. Champions were provided with a hard-copy champion training and staff support manual. Clinical staff were provided with 12 online education sessions, each taking 15– 30 minutes to complete depending on prior learning, 4– 6 hours of optional face-to-face education, and a hard-copy education manual on person-centered care foundations and practice examples. Champions provided ongoing support and guidance to staff in person-centered care practices, reinforced through posters and regular newsletters illustrating real-life examples and patient and family quotes of person-centered healthcare practices at the hospital. Person-centered care was additionally supported through concurrent champion revision of practice guidelines supporting changed behavior in persons with dementia. Staff were rewarded for their engagement with the program through a combination of peer awards and prizes for excellence in person-centered care, and with gift bags and certificates for recognition of learning achievements.
Measurement and data collection
The study protocol publication [37] provides full details of the study methodology, including: measurement, time-points, and analyses of healthcare service quality, person-centered care, and participant outcomes, according to the RE-AIM framework [34]. Study data were collected from May 2021 to April 2023 by three trained research personnel, with inter-rater reliability (IRR) at 96%. The comparison group’s de-identified demographic, clinical, and treatment data were accessed via the hospital’s health service electronic medical record (eMR) system and through review of hard copy clinical files, supervised by the hospital medical records manager. Clarification of retrospective file records occurred in discussion with senior healthcare staff. The intervention group’s demographic, clinical and treatment data were obtained by reviewing their eMR records and hard-copy files, clarifying file records with senior healthcare staff, through direct clinical assessment and by observation of healthcare delivery and outcomes throughout their hospital stay.
Evaluation of the person-centered intervention reach, adoption and implementation included pre- and post-intervention changes in healthcare service quality: organizational culture (Person-centered care of Older People with cognitive impairment in Acute care [POPAC] Scale) [38]; system operations that supported person-centered care (Person-Centered Climate Questionnaire (PCQ) Scale) [39]; and person-centeredness of treatment and care provision with participants (Quality of Interaction Schedule [QUIS]) [40]. Program effectiveness was evaluated for changes in intervention group agitation incidence (CMAI) [31] from week 1 (Time 1) to week 2 (Time 2) and to week of discharge (Time 3) (co-primary outcome), and by comparing changes for treatment and comparison group Time 1 to Time 3 delirium incidence (CAM) [32] (co-primary outcome). Secondary outcomes compared changes for intervention and comparison group Time 1 to Time 3 number of psychotropic medicines, number of incidents/injuries, length of stay, discharge destination, and hospital readmission rates within 30 days (Table 1).
Study measurement
Data analysis
Study measures were scored and analyzed according to published guidelines. At Time 1, Independent Samples T-rests were used at 95% confidence intervals to examine intervention and comparison group baseline scores for cognition (MoCA) [30] and function (FIM) [33], and length of hospital stay for both groups. With Independent Samples T-Test, Cohen’s d was applied to determine the effect size of group scores with 0.2 being a small effect, 0.5 a medium effect and 0.8 a large effect. Non-parametric Chi-square test at a = 0.05 was used to compare categorial parameters such as participant age and sex, to calculate changes in health service climate (PCQ) [39], quality systems (POPAC) [38], and quality of care (QUIS) [40] from pre- to post-intervention, and to compare changes in intervention and comparison group Time 1 to Time 3 delirium (CAM) [32] (co-primary outcome), psychotropic medicines, incidents/injuries, length of stay, hospital readmissions, readmissions within 30 days and discharge destination (secondary outcomes). For Chi-square tests, phi values of 10% were considered a small effect, 30% a medium effect and 50% a large effect. Independent-Samples Median Test was employed at 5% significant level to examine participant comorbidity median values. To examine changes in intervention group agitation (CMAI) [31] and its sub-groups from Time 1 to Time 3 (co-primary outcome), One-way Repeated Measures ANOVA at 90% Confidence Interval, with Bonferroni adjustment, were applied. Cohen’s f was computed based on the partial eta-squared values, with 10% as small effect, 25% as medium effect and 40% as large effect.
RESULTS
Participant demographics
Baseline data were obtained for N = 157 eligible persons living with dementia, including n = 80 intervention group and n = 77 comparison group, comprised of n = 81 females and n = 76 males with a mean age of 85.5 (range 70– 99). At baseline, there were no statistically significant differences (p > 0.05, CI 95%) in the mean ages of the intervention group (85.4) and the comparison group (85.6) and for female sex (intervention 44%, comparison 57%). At baseline, the intervention and comparison group mean cognition scores (MoCA) [30] were 17.2 and 17.3 respectively, and mean function scores (FIM) [33] were 66.0 and 66.1, respectively. There were no statistically significant differences (p = 0.163) in baseline median comorbidity scores; intervention group median was 8.5 (IQR 6– 11, mean 8.7, SD 3.28), comparison group median was 6 (IQR 5– 10.5, mean 7.6, SD 3.58).
Intervention reach, adoption and implementation.
Healthcare service quality
The pre-intervention PCQ [39] (organizational climate supportive of person-centered care) score was 57 out of 70, below the acceptable score of ≥63, while the POPAC [38] (person-centered care systems) score was 72 out of 90 and slightly more than the acceptable score of ≥70. At post-intervention the PCQ total score increased by 17.5% to 67 (p = 0.369) indicating a small effect size (phi = 0.08), while the POPAC total score increased by 18.1% to 85, (p = 0.291), also a small effect size (phi = 0.08).
Person-centered care practice and interactions
Observations of the interactions occurring for participants, at six hours per participant pre- and post-intervention, revealed significantly more positive (person-centered) QUIS [40] interactions between staff, the participants, and their family/carers (p = 0.000, phi = 0.60). At post-intervention there was also a significantly greater number of positive care interactions (constructive and beneficial, conversation and attempts to form a positive relationship during care and treatment) for participants (p = 0.000, phi = 0.37). While there was no change in the average number of QUIS neutral interactions (provision of treatment and care in the absence of conversation), there was a 40% reduction in the duration of these interactions. On average, QUIS negative care interactions (keeping safe or removing from danger in a restrictive manner without explanation or reassurance) were low at both time points. Table 2 presents the average number and duration of the different QUIS interactions for study participants at pre- and post-intervention.
Average number (n) and duration (minutes) of QUIS interactions per participant
Intervention effectiveness
Changes in intervention group (n = 80) outcomes.
There were no differences in the intervention group mean agitation (CMAI) [31] total score from baseline (Time 1) (1.15) to Time 3 (1.14) (p = 0.223) (co-primary outcome). From Time 1 to Time 2 there was a significant reduction in intervention group verbal aggression (p = 0.009, Cohen’s f = 0.30) and a non-significant reduction in physical aggression (p = 0.063, Cohen’s f = 0.21) (Table 3). Intervention group Time 3 delirium (CAM) [32] reduced significantly (p = 0.000, phi = 0.73) from baseline, as did incidents/injuries (p = 0.000, phi = 0.98) and psychotropic medicines (p = 0.03, phi = 0.09) (secondary outcomes).
Changes in intervention group agitation Time 1, Time 2, and Time 3
*Cohen’s effect size on partial eta-squared values.
Comparing changes in intervention (n = 80) and comparison (n = 77) group outcomes.
Relative to the comparison group, from baseline (Time 1) to Time 3, there was a significant reduction and a large effect size in intervention group delirium (CAM) [32] (p = 0.000, phi = 0.73) (co-primary outcome). At Time 3 and relative to the comparison group, there was a significant reduction and a large effect size in intervention group incidents/injuries (p = 0.000, phi = 0.99), as well as a significant reduction but small effect size for psychotropic medicines (p = 0.030, phi = 0.09), unplanned hospital re-admissions (p = 0.018, phi = 0.25) and readmissions within 30 days (p = 0.002, phi = 0.25). There were a greater number of discharges to their own home for the intervention group (p = 0.171, phi = 0.11) (Table 4).
Intervention (n = 80) and comparison (n = 77) group outcomes Time 1 (baseline) to Time 3
*Cohen’s d for means by Independent T-test at 95% confidence interval.
DISCUSSION
This study demonstrated significant improvements in service and care quality, and health outcomes, for persons with dementia during a sub-acute hospital stay, where the Kitwood [13] model of person-centered care was implemented through a knowledge translation framework. These positive outcomes occurred despite the study coinciding with the second and third years of the COVID-19 pandemic, which negatively impacted the hospital through increased service requirements, decreased staffing and visits (family and non-essential staff), and restricted freedom of movement for persons with dementia.
Unlike in our previous pilot trial of the Kitwood [13] model in the acute hospital [23], there was no reduction in the intervention group agitation (co-primary outcome) over the hospital stay, likely because of baseline levels of agitation being so low. All other clinical outcomes improved for the intervention group with person-centered care, including the co-primary outcome delirium, compared with the comparison group matched for age, cognition, and function. As delirium is prevalent in persons with dementia during hospitalization [8] [9], our results confirm the conclusions of systematic reviews [17–19] of the Kitwood [13] model, that individually tailored care and treatment can prevent delirium incidence. There were also significant reductions in incidents/injuries, psychotropics and unplanned readmissions, and an increase in discharge to the person’s home in the community. Length of stay increased in line with changes in the hospital isolation and discharge policies during the peak of pandemic restrictions (2022– 2023).
Despite these positive results, a study limitation included reliance on retrospective data for the comparison group. Since the average number of potentially eligible persons with dementia admitted to the hospital in any one year was 108, it would have been necessary to recruit the required 160 participants over two years. Owing to the dynamic COVID-19 policies governing visitor access and healthcare practices at the hospital over the course of the study, it was considered more favorable to utilize pre-exiting patient data which was approved for secondary research purposes. A limitation of using retrospective data is potential for data entry errors and omissions since these data are obtained and recorded by multiple clinicians. This limitation was apparent when relying on eMR records and hard-copy files to obtain comparison group agitation (CMAI) [31] data. Since no validated agitation measure was routinely used by clinicians to obtain these data, it was necessary to rely on behavior and treatment/care records, which were incomplete and often contradictory. Thus, we were unable to reliably compare intervention and comparison group agitation data.
Another limitation is that we could not accurately compare primary and secondary outcomes for non-participants, because approximately 15% of potentially eligible persons with dementia and/or their proxies declined to participate, which meant these potentially useful data were unavailable. Additionally, staff and patient COVID-19 precautions and exposure led to significant limitations on family/carer visits to study participants, the frequency and duration of staff interactions with participants and movements of participants within the hospital for rehabilitation and opportunity to systematically assess participant function with the FIM [33], or similar measure, over time. COVID-19 precautions also impacted on face-to-face staff education opportunities, and the champion’s ability to provide point of care support to staff in person-centered practice.
The study, nevertheless, had many strengths. Despite the evolving situation regarding COVID-19 and the associated policy mandates which impacted persons with dementia, their family/carers and the staff, the high-level commitment to the person-centered care model shown by the hospital executive, managers and champions enabled the program to progress and achieve its aims. The program’s success also reflects the strong collaboration between the hospital team members and academic partners in providing governance to the study and in facilitating the translation of person-centered care knowledge and skills to improve outcomes for persons living with dementia.
Conclusion
This is one of the few studies which have successfully adapted the Kitwood [13] model of person-centered care to the requirements of the sub-acute hospital setting, and to have systematically implemented and rigorously assessed its effectiveness in improving outcomes for persons living with dementia. The favorable health service and clinical results arising from the study confirm the benefits of providing education and supporting clinical staff in person-centered care practices. In identifying areas of healthcare excellence and areas for improvement, the PCQ [39], the POPAC [38], and QUIS [40] can help care managers and clinicians to reflect on treatment and care practices necessary to upholding healthcare standards according to the VIPS [36] framework of a person-centered service. Future efforts to investigate the therapeutic effects of person-centered care in sub-acute and acute hospital settings should take into consideration the time and financial resources required to plan, implement and evaluate such changes, and to sustain improvements in the outcomes for the person with dementia and the organization beyond the life of the research project. Since the ultimate goal of sub-acute rehabilitation programs for older people with disabilities is to help them achieve their optimal level of function [41], measuring the effectiveness of person-centered care in this setting might include evaluation of the person’s independence in activities of daily living and mobility, and their continuing function following discharge.
AUTHOR CONTRIBUTIONS
Lynn Chenoweth (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Supervision; Validation; Writing – original draft; Writing – review & editing); Claire Burley (Data curation; Formal analysis; Investigation; Project administration; Supervision; Validation; Writing – original draft; Writing – review & editing); Jacquelene Cook (Data curation; Formal analysis; Investigation; Methodology; Writing – review & editing); Seong-Leang Cheah (Data curation; Formal analysis; Methodology; Software; Supervision; Validation; Writing – review & editing); Patricia Reyes (Conceptualization; Formal analysis; Funding acquisition; Investigation; Methodology; Supervision; Validation; Writing – review & editing); Genevieve Maiden (Conceptualization; Funding acquisition; Methodology; Project administration; Resources; Supervision; Validation; Writing – review & editing); Jane McGuire (Conceptualization; Funding acquisition; Methodology; Resources; Validation; Writing – review & editing); Donna McCade (Conceptualization; Formal analysis; Methodology; Resources; Supervision; Validation; Writing – review & editing); Henry Brodaty (Conceptualization; Formal analysis; Funding acquisition; Methodology; Resources; Validation; Writing – review & editing); Mayouri Sukhapure (Investigation; Methodology; Resources; Validation; Writing – review & editing); Fleur Harrison (Formal analysis; Investigation; Resources; Validation; Writing – review & editing); Anna Williams (Conceptualization; Formal analysis; Funding acquisition; Methodology; Supervision; Validation; Writing – review & editing).
Footnotes
ACKNOWLEDGMENTS
The authors acknowledge and appreciate the advice and support of the Expert Advisory Group members and the Project Steering Committee, and the generous contributions of study participants.
FUNDING
The study was funded by the National Health and Medical Research Council of Australia (NHMRC), within the World Class Dementia Research project scheme, Ref: RG180842-E. The authors have not entered into an agreement with the funding organization that has limited their ability to complete the research as planned and publish the results.
The authors have had full control of all the primary data.
CONFLICT OF INTEREST
HB is or has been an advisory board member or consultant to Biogen, Eisai, Nutricia, Roche, and Skin2Neuron. He is a Medical/Clinical Advisory Board member for Montefiore Homes and Cranbrook Care. The other authors have no conflict of interest to report.
DATA AVAILABILITY
Any datasets used and/or analyzed during the study will be available from the corresponding author (LC) on reasonable request. The data are not publicly available due to privacy or ethical restrictions.
