Person-Centred Care Transformation in a Nursing Home for Residents with Dementia

Dementia afflicted 50 million people worldwide in 2018 and will exponentially rise to 152 million by 2050 [1]. Singapore, a rapidly ageing nation, will grow from 5.7 to 6.6 million people between 2017 and 2050 with 40% comprising seniors age >60 years [2]. An estimated 10% of seniors suffer from dementia, 3% live in nursing homes (NHs), and more are expected to do so given a lack of familial caregiving arrangements for seniors [3, 4]. Conversely, 50–60% of NH residents suffer from dementia [5].

NHs in Singapore evolved as extensions of hospitals and operate on an institutional care model with dormitory-style facilities and emphasis on medical and custodial needs of the residents. The care ethos centres around safety where priority is accorded to risk management and residents have limited independence. Such care falls short of providing the milieu where human needs are holistically met and residents can continue to thrive despite the losses that accompany ageing.

A 2006 study of Singapore NH residents [6] found that approximately 30% had significant decline in function in 5 years. Depression in NH residents was 21% in a 2013 study [7], while a separate group of investigators reported >30% were discontented over not having their preferences met in food choices and daily routines [8]. Similar problems have been reported in NHs in the region with issues in activity restriction, a lack of relationships and individualized care, and challenges in maintaining a familiar home-like lifestyle [9, 10].

With rising expectations among increasingly affluent and educated seniors, there is impetus for NHs to look beyond institutional and medicalized care towards humanistic and holistic resident-centric care that affords greater agency. Such care aims to enhance well-being in residents by according them dignity and respect, and facilitates the confluence of medical and social facets of care.

Person-centred care (PCC) is a socio-psychological care approach that recognizes each person’s unique identity, preferences, and needs. PCC prioritizes individual well-being through meaningful occupation and improving the quality of relationships between care provider and recipient [11]. Although persons with dementia (PWDs) experience deteriorating cognitive and functional abilities, their need for human interaction and participation in purposeful pursuits remains [12].

Kitwood [13] posited that care for PWDs should emphasize attending to human needs, including inclusion, occupation, and love. Operationally, the VIPS [11] captures the essence of PCC, which entails Valuing PWDs and those who care for them (V), treating PWD as unique Individuals (I), seeing the world from their Perspective (P), and providing a Social environment where PWDs can experience relative well-being (S). Today, PCC is synonymous with high-quality care and advocated by many healthcare organizations including the WHO [14].

When applied to long-term care, PCC is distinct from conventional NH culture, which is typically hierarchical, whereby decisions are based on the organization’s priorities and implemented top-down. Instead, the PCC decentralizes decision-making based on the needs and preferences of residents, thereby fostering a greater sense of belonging and has been evidenced to improve care quality and residents’ well-being [15]. The Green House Project [16], which upholds a PCC culture that emphasises quality of life, has reported enhanced outcomes in resident well-being and function, decreased hospitalizations, and use of psychotropics. Benefits were also seen in staff turnover and satisfaction [17].

In 1999, Apex Harmony Lodge (AHL) was the first purpose-built NH for PWDs in Singapore. Since 2015, it has partnered the local Alzheimer’s Association to transform care by adopting an organizational-level implementation of PCC [18]. We herein describe the AHL model of dementia care and evaluate the outcomes on resident well-being and care quality with Dementia Care Mapping (DCM) in AHL’s assisted living facility. We compared outcomes in the period prior to PCC inception (2015) to post-implementation (2016).

This is an observation cohort study in a 30-bed assisted living facility for male PWDs. Participants’ characteristics are shown in Table 1. The Resident Assessment Form (RAF, Appendix 1) categorizes the residents based on their physical, custodial, and socio-psychological needs [19]. The majority of the participants were RAF Category 2 and 3. Twenty-one residents mapped in 2015 were re-mapped in 2016.

The logic model conceived to facilitate PCC implementation is shown in Table 2.

The whole organization, including senior management, underwent PCC training to reframe problems into opportunities and continually refine practice. The leadership honours the good work of staff with processes to document learning, share good practices, and publish the work.

AHL provides individualized care, stresses the need to empathize with residents, and prioritizes positive social psychology with an environment that stresses human relationships. Each resident has a Living Well Plan (LWP) that captures his life history, personality, interests, and preferences. By knowing the residents intimately, staff are empowered to uphold residents’ selfhood and customize care.

Activities are tailored according to each resident’s LWP and purposed to target his strengths and preferences to enhance well-being. Personalized activities are available and residents are also involved in vocational activities such as sweeping, changing bedsheets, and serving food. A variety of community-based programmes including working at worksites outside the NH and breakfast at neighbouring food centres are provided. These diverse activities enrich the residents’ everyday life.

A busy and engaged life at AHL reduces the occurrences of challenging behaviours in the residents. Should residents display any behaviours of concern, they are usually resolved respectfully given the close rapport built with staff and a deep understanding of the resident through daily interactions and the LWP.

The facility underwent renovation to incorporate design features compatible with PCC. The living space adopts a 5-bed cluster configuration with an en suite bathroom. Post-renovation, bigger windows and balconies with unobstructed access to the outdoor garden are provided for each cluster. A cosy home-like environment was fashioned and the living area was carved out to enable increased interactions between residents, staff, and visitors. Activities are held closer to amenities such as washrooms, the dining area, and pantry to facilitate residents’ independence.

Systems are in place to support staff development through competency-based training and education about PCC, emphasizing the primacy of a social environment that values the residents. Sustainability is ensured by nurturing in-house PCC specialists to uphold care standards and update the training curriculum, including onboarding training for new staff.

To secure continuous improvement, staff trained in DCM regularly conduct care mapping to provide objective appraisals of the residents’ quality of life [20] and the quality of care provided.

DCM is a multicomponent structured observation tool based on Kitwood’s theory of personhood [13] which helps identify aspects of care culture that contribute to resident well-being or conversely, detract from well-being, which can be targeted for improvement.

Four coding frames are used: 1. Behaviour Category Coding (BCC), which represents the activity or behaviour the resident is engaged in. 2. Well-being or Ill-being (WIB) value, which represents the state of the resident’s well- or ill-being during the time frame and is rated on a 6-point scale: –5, –3, and –1 representing disengagement and negative mood, +1, +3, and +5 representing positive engagement and mood. The score is aggregated to derive the overall WIB score for the resident. Coding frames 3 and 4 are Personal Detractors (PDs) and Personal Enhancers (PEs), respectively, which denote episodes when staff interact with residents in a way that either undermine or uphold their personhood.

Prior to commencement of observation, the staff were instructed to perform their duties as they would on a typical day so that the residents’ usual routines could be accurately mapped.

Two certified dementia care mappers were involved in both the 2015 and 2016 maps. Mapping was conducted in the morning, during lunch, and late afternoon over a representative period of 1–2 h in communal areas of the facility. Each resident’s BCC and WIB value is recorded in every 5-min time frame.

Statistical analyses were performed using SPSS (Windows version 22.0; IBM Corp, Armonk, NY, USA). Descriptive statistics of the time spent in activities and the states of well-being, including mean and standard deviation, were calculated for continuous data. Paired t test was used to compare the mean differences between the year 2015 and 2016, focusing on the outcomes WIB, occupational diversity, agitation/distress, withdrawn state, passive engagement, and PEs and PDs.

A total of 1,430 five-minute-interval data and 1,590 five-minute-interval data were collected in 2015 and 2016, respectively. On average, each resident was mapped for 4 h in each year.

In 2015, the top 5 BCCs were watching or uninvolved (B), engaging in work-like activities (V), standing or walking (K), participating in leisure activities (L), and sleeping or dozing (N). Three out of the five (V, K, L) were rated high to highest in well-being potential. Comparatively, in 2016, the top 5 BCCs were V, L, B, eating or drinking (F), and K. Four out of the top five BCCs (V, L, F, K) were rated high to highest in achieving well-being potential. There was a significant reduction in B and N by 47% and 62%, respectively, in 2016 compared to 2015.

There was a statistically significant improvement in aggregated resident WIB scores in 2016 compared to 2015. Twenty-one residents re-mapped in 2016 demonstrated higher WIB scores (Table 3), so were potential for positive engagement and occupational diversity. Residents were less withdrawn and showed less passive engagement in 2016.

Provision of “comfort” doubled in 2016 compared to 2015 (shown in Fig. 1) where the incidences of “attachment” in 2016 were 2.25 times more. There was an overall increase in PEs, which contributed to higher resident well-being in 2016.

There were no incidences of undermining residents’ “comfort” or “attachment” in 2016 relative to 2015 (shown in Fig. 2). There was a 3.3 times reduction in practices that undermined “inclusion” such as stigmatizing or ignoring. Thus, overall PDs were reduced in 2016 versus 2015.

Twenty direct care staff resigned in 2015/2016 as compared to nine in 2016/2017, amounting to 55% reduction in staff turnover rates.

AHL undertook the task of PCC transformation in 2015 and after a year into the journey, improved outcomes on care quality, patient well-being, and staff turnover were seen. As depicted in the logic model, investments into the staff, environment, care plans, and resident activities helped procure these outcomes.

Embracing PCC at every level of the organization empowered staff to re-invent care with the new priorities of enhancing residents’ well-being, autonomy, and independence. Both classroom and on-the-job training afforded opportunities for role-modelling as an essential component of in-house learning. Having practitioner-leaders steeped in PCC function as mentors and motivators allowed staff to continuously innovate and adapt to the changing needs of the residents, and share strategies that worked. This translated to an increase in the PEs “comfort” and “attachment” with no PDs in these same domains. There was also a 3.3 times reduction in the PDs related to a lack of “inclusion” in stigmatizing and ignoring practices post-intervention. These improvements could be attributed to staff being better able to understand, empathize, and communicate with the residents, thereby providing the social milieu founded on relationships to help residents thrive.

The incorporation of meaningful activities into the residents’ routines promotes their well-being. It prevents disability [21], which is germane to good care and outcomes [22]. A culture of individualized care, coupled with increased opportunities for meaningful occupation, enhanced the residents’ experience as seen in the higher WIB values. There was also increased potential for positive engagement and occupational diversity in 2016. There was a significant reduction in withdrawal and passive engagement in 2016 as compared to 2015 with an overall decrease in the number of PDs, reflecting a better quality of care post PCC implementation. The findings were further validated in 21 of the same residents who were re-mapped in 2016, 1 year post PCC implementation. These residents’ WIB scores were higher in 2016, demonstrating the benefits of PCC intervention in improving their well-being.

These findings support Kitwood’s hypothesis that positive interpersonal relationships and an augmented care environment can avert the disabling effects of dementia and foster enhanced well-being [13]. Conceivably, the provision of an inclusive and home-like environment which allowed greater resident autonomy and independence in activities of daily living helped to maintain their personhood, which facilitated enhanced physical and overall well-being [23]. The use of LWPs provided a deep understanding of each resident and afforded personalized care that upheld his identity and dignity, which are salient to securing well-being.

A few studies [24-26] have identified a positive effect of PCC on agitation among PWD. Our findings, however, demonstrated a non-significant reduction in agitation. Although agitation is one of the most common neuropsychiatric symptoms in PWD, it is often a response to specific care events. We postulate that as DCM observes the residents’ behaviour in general rather than in relation to specific events such as during personal care when agitation is more likely to occur, the results may not accurately reflect the actual situation. Moreover, agitation scores were already low in this group of residents prior to PCC implementation.

High staff turnover in NHs is known given generally poor job satisfaction and heavy workloads without commensurate remuneration. The finding of a 55% reduction in staff attrition is noteworthy and consistent with extant literature that shows PCC not only improves the residents’ well-being but also has desirable outcomes in improved staff satisfaction and reduction in turnover [27]. The emphasis on nurturing relationships in PCC could have salutary effects on staff satisfaction and retention, notwithstanding the benefits that gratification brings when staff see the residents thriving and not merely surviving.

Our study has several limitations. First, it comprises a modest sample in an assisted living facility comprising only male residents; thus, generalizability and robustness of the findings may be limited. Second, information on dementia severity was lacking, which could be an important consideration in assessing the impact of PCC, especially its relative effects between Category 2 and 3 residents. Third, there was a difference in the overall profile of the residents between the two time periods compared, which could impact the outcomes in resident well-being and function. Finally, the hours mapped per resident may be not be adequate or representative enough to gain a broader and more holistic impression of the residents’ entire experience.

While healthcare in general has seen quantum leaps in quality and productivity over the years, progress in long-term care has comparatively been in the doldrums especially in this part of the world. With advancing cohorts of educated seniors with more sophisticated needs, there is clearly an impetus to move towards progressive models of long-term care to better cater to our seniors, especially those with dementia, who form a significant proportion.

AHL has been a forerunner in the endeavour to re-invent care and these preliminary outcomes have shown promise in attaining a superior quality of care, enhanced resident well-being, and better staff retention. The logic model delineates how specific changes could have affected the outcomes. It is hoped that the AHL PCC model can serve as a roadmap for other NHs and hold sway over-long term care standards and regulations for policy makers and legislators.

We would like to express our sincere appreciation to Ms Soh Mee Choo and all staff at AHL who so generously made time and worked with us in sharing the data and helping us understand the AHL PCC model. Special thanks also to Ms Koh Hwan Jing from Alzheimer’s Disease Association, who assisted in DCM and providing the attendant information.

Ethics approval was granted by the National University of Singapore Institutional Review Board (reference S-17-188) with a waiver of consent as the study was of minimal risk and does not adversely affect the rights and welfare of the residents, whose anonymity was preserved. Observation of the residents with the DCM tool would not be possible practically as they might behave differently if they knew they were observed.

The authors have no conflict of interest to declare.

This study received no funding.

Peiyan Ho analysed and interpreted the data and drafted and revised the manuscript. Chin Yee Cheong interpreted the data and revised the manuscript. Shiou Liang Wee conceived the study, interpreted the data, and revised the manuscript. Siew Pei Ong collected and interpreted the data and revised the manuscript. Carol Fusek conceived the study, acquired the data, and reviewed the manuscript. Philip Yap conceived the study, interpreted the data, and revised the manuscript. All authors gave approval for the final version of the manuscript.