Person-centred Dementia Care Research Articles

Development of a Quantitative Instrument to Elicit Patient Preferences for Person-Centered Dementia Care Stage 1: A Formative Qualitative Study to Identify Patient Relevant Criteria for Experimental Design of an Analytic Hierarchy Process.

Background: Person-centered care (PCC) requires knowledge about patient preferences. This formative qualitative study aimed to identify (sub)criteria of PCC for the design of a quantitative, choice-based instrument to elicit patient preferences for person-centered dementia care. Method: Interviews were conducted with n = 2 dementia care managers, n = 10 People living with Dementia (PlwD), and n = 3 caregivers (CGs), which followed a semi-structured interview guide including a card game with PCC criteria identified from the literature. Criteria cards were shown to explore the PlwD’s conception. PlwD were asked to rank the cards to identify patient-relevant criteria of PCC. Audios were verbatim-transcribed and analyzed with qualitative content analysis. Card game results were coded on a 10-point-scale, and sums and means for criteria were calculated. Results: Six criteria with two sub-criteria emerged from the analysis; social relationships (indirect contact, direct contact), cognitive training (passive, active), organization of care (decentralized structures and no shared decision making, centralized structures and shared decision making), assistance with daily activities (professional, family member), characteristics of care professionals (empathy, education and work experience) and physical activities (alone, group). Dementia-sensitive wording and balance between comprehensibility vs. completeness of the (sub)criteria emerged as additional themes. Conclusions: Our formative study provides initial data about patient-relevant criteria of PCC to design a quantitative patient preference instrument. Future research may want to consider the balance between (sub)criteria comprehensibility vs. completeness.

Are we on the same page? Multiple stakeholders and service users priorities for dementia care and policy: A Delphi study

BackgroundIt's crucial to develop a national policy for dementia due to the growing number of persons living with the condition and the attendant impact on individuals, families, and society at large. However, there has been limited exploration of the views on long-term goals for dementia of different stakeholders involved in different aspects of service use, planning or delivery. ObjectiveThis study aims to examine and compare the perceived priorities of service users (i.e., people living with dementia and their family caregivers) and other multiple stakeholders for dementia care and policy. DesignTwo independent Delphi studies were conducted in Hong Kong. Setting(s) and participantsIn Delphi study 1, 75 stakeholders were recruited from public and private nursing, medical and social care providers, philanthropic organizations, policy-makers and government sectors. In Delphi study 2, 45 people living with dementia and 55 family caregivers were recruited from community care settings. MethodsThe Delphi study 1 was conducted using online surveys, while the Delphi study 2 was conducted using phone interviews. Each Delphi study comprised a qualitative study for exploring the range of views of the two panels and a quantitative validation for generating consensus. We systematically compared the two panels' identified priorities in terms of contents and consensus levels. ResultsMultiple stakeholders identified 32 consensus-based statements and service users identified 25 statements, most of which achieved moderate to high level of consensus. Through content analysis, statements from the two panels were converged into six common themes: (1) early prevention, detection and referral systems for dementia, (2) care and intervention services, (3) health and social care workforce capacity building within and across service sectors, (4) supportive services for family caregivers, (5) development of longer-term dementia service planning and a policy framework, and (6) promotion of a dementia-friendly community. Despite the similarity of the themes expressed by the two panels, critical comparison of their priorities identified the dementia service and policy gaps in providing integrated and informed healthcare, a mechanism for sensitive care allocation, enabling seamless social inclusion, and proactive health orientation of dementia caregivers. ConclusionsDiscrepancies between two panels reflect the distinctive value of service user engagement in the policy-making process. Our findings have implications for developing a multi-disciplinary integrated action plan for the local health response across the primary and secondary care settings to dementia and expanding the practice scope of person-centered dementia care in a collaborative way. Tweetable abstractThe voices of user, caregivers and service stakeholders excel the person-centered care and policy context for integrated dementia care.

Understanding person-centered dementia care from the perspectives of frontline staff: Challenges, opportunities, and implications for countries with limited long-term care resources

Semi-skilled or unskilled nursing care aides primarily provide direct care to residents in long-term care (LTC) facilities in China and many other countries around the world. There has been a significantly increased commitment from nurses and other formally trained professionals to provide person-centered care (PCC) for people with dementia (PwD). However, it is still unclear how nursing care aides who provide direct care to older residents with dementia understand and adopt PCC in their daily work. It is of utmost importance to understand person-centered dementia care from the perspectives of care aides, and to identify implications to facilitate and sustain their efforts in providing quality care for older residents with dementia. We found that the seemingly beneficial mental models used by care aides in their work can hinder them from playing a more adaptive role in tailoring their care to the needs of older residents. Infantilizing older residents with dementia and labeling them using mother wit can prevent meaningful, equal, and person-centered conversations between both parties. Care aides do not have regular formal interactions and sensemaking with nurses and other professionals in nursing homes. Increasing interactions and communication between care aides and health care professionals in nursing homes can lead to insight for changing the approach to in-service training to achieve better acceptance by care aides. The current study derives implications for operationalizing and embedding the principles of PCC in daily care.

The Need for Stability in Paid Dementia Care: Family Caregiver Perspectives.

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

Enhancement of Aging in Place: An Evolving Understanding of Person-Centered Dementia Care in Home Settings.

There has been a rich body of literature on informal caregivers of persons with dementia (PWD). However, little has been discussed on how to facilitate person-centered dementia care in home settings with spouses as primary caregivers. We tend to take it for granted that spouses provide person-centered care for PWD. However, being spouses of PWD and living with them for several decades does not necessarily mean that it is easier for them to provide person-centered dementia care and maintain valued and healthy relationships. The current study aimed to explore dyadic experiences of PWD and their spousal caregivers and develop a culturally and contextually-sensitive understanding of person-centered dementia care in home-based settings. A total of 20 dyads of PWD and their care partners were selected for this study. A trained qualitative interviewer conducted a one-on-one interview with each participant with dementia and their care partners separately. We adopted both conventional and directed content analyses. Our findings provide examples of care partners provide person-centered care, resulting in a profound positive impact on their wellbeing. Adaptive leadership and collaborative work emerged as a key finding in facilitating person-centered dementia care. Cultural relevancy of person-centered dementia care was also interpreted from the data. The study findings provide implications for the evolving of person-centered dementia care model in home-based settings. Findings from this study highlight the significance of facilitating person-centered dementia care in home-based settings between PWD and their primary family caregivers.

Factors influencing the dementia care behavior of long-term care hospital nurses

This is a descriptive research study for examining influencing factors on person-centered dementia care behaviors of nurses working in long-term care hospitals. In March 2021, data were collected from 13 care hospitals located in Seoul and Gyeonggi-do. The subjects include a total of 180 long-term care hospital nurses who have the experience to care for elderly people with dementia. Descriptive statistical analysis, t-test, ANOVA, Scheffé-test, Pearson’s correlation, and hierarchical multiple regression analysis of the data collected were conducted using IBM SPSS 25.0. The dementia care behaviors of long-term care hospital nurses had statistically significant correlations with caring efficacy (r=.49, p<.001), nursing professionalism (r=.43, p<.001) and job resources (r=.37, p<.001), and influencing factors on dementia care behaviors had the final explanation of 36.7% (adj R²=.367, F=14.253, p<.001). Ultimately, the most significant influencing factor on dementia care behaviors of long-term care hospital nurses was identified as nurses’ caring efficacy, followed by nursing professionalism, and nurses’ age and job resources. The higher the nursing professional intuition, the older the nurse's age, and the higher the job resource, the more important the person-centered dementia care behaviors. This study is meaningful in identifying the factors affecting person-centered dementia care behaviors of long-term care hospital nurses and providing basic data to improve dementia care behaviors.

Nursing students’ learning about person-centred dementia care in a nursing home: A qualitative study

It is unclear to what extent nursing students are able to apply person-centred care in practice, despite a mixture of educational support approaches. The aim of this study was to explore nursing students’ experiences of learning about person-centred dementia care after they participated in an adopted education programme in a nursing home. The education programme presented the main concepts of person-centred care. A qualitative explorative design was chosen where 32 bachelor-level nursing students participated in seven focus groups. The study is reported according to the COREQ checklist. Qualitative thematic content analysis revealed two main themes: care culture in the nursing home as joyful and inclusive, and the nursing student role as ambivalent and challenging. The nursing home management, staff members and patients, together with the programme, seemed to enhance students’ learning about person-centred dementia care.

Person-centered dementia care during COVID-19: a qualitative case study of impact on and collaborations between caregivers

BackgroundLittle is known about the actual impact of COVID-19 on caregivers of older people with dementia and resultant collaborations among them to provide continued person-centered care while undertaking infection control measures. In this study, we explored the impact of providing dementia care during COVID-19 on caregivers involved in dementia care.MethodsThis is an exploratory qualitative case study. The participants were family members living with older people with dementia, care managers, and the medical and long-term care facility staff. Data were collected from 46 caregivers via face-to-face and semi-structured interviews and analyzed using thematic analysis.ResultsThe interviews identified 22 themes related to the impact of COVID-19 on different positions of the caregivers involved in dementia care and their collaboration, and we categorized them into six categories. The core themes were “re-acknowledgement of care priorities” and “rebuilding of relationships.” When caregivers’ perceptions were aligned in the decision-making processes regarding care priorities, “reaffirmation of trust” and “strengthening of intimate relationships” emerged as positive changes in their relationships. Furthermore, the differences in the ability of each caregiver to access and select correct and appropriate information about COVID-19, and the extent of infection spread in the region were related to “anxiety during COVID-19 pandemic” and caused a “gap in perception” regarding infection control.ConclusionsThe present study clarified that the process of aligning the perceptions of caregivers to the objectives and priorities of care for older people with dementia during COVID-19 pandemic strengthened the relationships among caregivers. The findings of this study are useful for caregivers involved in person-centered dementia care.

Effectiveness of programs developed for nurses to improve dementia nursing intervention ability in an acute care setting

The number of hospitalizations of older patients with dementia who require medical treatment has increased and delirium or physical restriction have become problems in the acute care setting. Dementia nursing intervention ability developing program by e-learning assumed the quality improvement of dementia medical care and the nursing of older patients with dementia based on person-centered aimed at reduction of body restriction. The purpose of this study was to validate the effectiveness of the developed e-learning programs for nurses in the acute care setting of seven to one nursing standards. This study was conducted between April and December 2020. This study was introduced to the floor nurse of the hospital for suitable application. Interested nurses were asked to attend "Developing programs for Dementia nursing intervention ability (4 weeks)" at four different time points (1) before attendance (baseline), post-attendance (1 month later), (3) practiced 3 months post-attendance, and (4) practiced 6 months post-attendance. A questionnaire to evaluate program effectiveness asked about consciousness of the dementia nursing with four items on "Interest in nursing of people with dementia and so on (four items)".In the evaluation on the person-centered dementia care, using the Self-assessment Scale of Nursing Practice for Elderly Patients with Cognitive Impairment, the Approach to Dementia Questionnaire - Japanese Edition (19 items). In the evaluation of ethics, ethical sensitivity scale for clinical nurses (19 items), self-efficacy on reduction of the physical restriction (six items). A statistical analysis was conducted using the Bonferroni test as the multiple test method to compare baseline values with the values obtained 1, 3, and 6 months later. A total of 70 subjects were analyzed in this study. They belonged to different wards including the surgical and internal wards from where 60 subjects (85.7%) were recruited. The average clinical experience of the nurses was 13.5±9.5 years. The degree of self-efficacy was assessed in terms of attaching mitten type gloves as a physical restraint to avoid the pulling of tubes used for intravenous feeding, central veins, normal feeding, etc. by the patients and so on. Most patients had cognitive functional disorder, including dementia [n = 30 (42.9%)]. The self-assessed scale of nursing practice for elderly people with cognitive impairment, which aimed to promote person-centered care in an acute care hospital, revealed that the total score of each of the Approaches to Dementia Questionnaire - Japanese Edition significantly increased just after intervention (1 month) in comparison to baseline, and 3 months and 6 months after intervention. This study indicated that the program developed to improve dementia nursing intervention ability significantly increased the above-mentioned evolution and consciousness of nurses after the intervention program (1 month), followed by 3 months and 6 months later. Along with ethical sensitivity, practice aimed at person-centered care was also found to improve. It was suggested that the intervention program of this study was effective and that nurses could easily learn using their respective free time and practice.

POSA422 Preferences for Person-Centred Care Among People with Dementia in Comparison to Physician's Judgments: Study Protocol for the Predemcare Study

For People living with Dementia (PwD), Person-Centered Care (PCC) is emphasized. PCC requires knowledge about patient preferences. Data about quantitative preferences for dementia care, which would allow a quantification, weighting and ranking of patient-relevant criteria, are limited. Likewise, physician's judgments about PCC for PwD need to be known, as a divergence between patient preferences and physician’s judgements would decrease the chance of viable value-based person-centered dementia care.

Dementia-Related Care in Acute Care Settings: A Qualitative Meta-Synthesis of Patient and Family Perspectives

Researchers have long emphasized the importance of a person-centered approach to health care, especially regarding the treatment of individuals living with dementia. However, the fast pace of acute care settings can be a difficult place to provide such care to patients, where there are tensions between the emphasis on efficient treatment of acute medical co-morbidities and person-centered dementia care. This paper is a meta-synthesis of qualitative studies examining perspectives of patients and their family members regarding their acute care experiences. It takes an interpretive approach, using primarily inductive reasoning to generate themes across available studies’ findings. Emergent themes are organized under two major dimensions of the hospital environment: the physical environment, including sensory and tangible elements, and the social environment, including the hospital atmosphere and communication practices. Persons with dementia feel overly stimulated by the busy physical environment of the hospital, yet they are often left to languish alone, sometimes even physically restrained. Patients reported feeling lonely, fearful, and confused, identifying diverse physical and social environmental attributes like physical clutter, noise, and lack of empathy from care providers as contributors. Based on acute care experiences and reports from patients and family members, although the acute condition is treated, persons with dementia often leave the acute care environment in worse functional condition than when they entered. Given the increasing prevalence of persons with dementia in acute care settings, it is clear that we must prioritize innovations and programs aimed at improving hospital practices, educating staff, and creating more dementia-friendly environmental designs.

Perspectives Toward Person-Centered Long-Term Care in China

Health care aides provide direct care for older residents with advanced dementia in long-term care facilities. This study aims to understand care aides’ perceptions of what is ‘good’ care, what is person-centered care, and how to provide person-centered care for older residents with advanced dementia, as preparatory work of the WE-THRIVE consortium’s efforts to develop internationally-relevant common data elements of person-centered dementia care and launch comparative research in LMICs. Semi-structured interviews were conducted with health care aides (N=35) from 2 government-owned and 2 private long-term care facilities in urban China. Directed and conventional content analysis were used, drawing upon core constructs of person-centered dementia care and Nolan’s (2006) senses framework. We found that although care aides were not trained in person-centered care, they did incorporate person-centeredness in their work by tailoring their care to the needs of older residents and facilitating interactions with residents and their peers through communication cues.

Key Intervention Categories to Provide Person-Centered Dementia Care: A Systematic Review of Person-Centered Interventions.

Background:Person-centered care (PCC) is an important concept in many countries’ national guidelines and dementia plans. Key intervention categories, i.e., a taxonomy of person-centered (PC)-interventions, to provide person-centered dementia care, are difficult to identify from literature.Objective:This systematic review aimed to identify and categorize published PC-interventions into key intervention categories to guide the provision of person-centered dementia care.Methods:Conduct of this systematic review followed Cochrane guidelines. A search of the dimensions ‘Dementia’, ‘Person-Centered Care’, and ‘Intervention’ combined was performed in PubMed, EMBASE, and Web of Science. Study selection was based on 2-stage screening against eligibility criteria, limited to controlled study designs. Information about interventions and outcomes was extracted into an “Effects Table”. The identified PC-interventions were categorized in intervention categories to provide person-centered dementia care.Results:Searches identified 1,806 records. 19 studies were included. These covered a range of psychosocial interventions, oftentimes multi-component interventions, which followed heterogeneous approaches. Studies were conducted in long-term care/hospital settings. Nine key intervention categories were identified: social contact, physical activities, cognitive training, sensory enhancement, daily living assistance, life history oriented emotional support, training and support for professional caregivers, environmental adjustments, and care organization.Conclusion:Our findings provide a current overview of published PC-interventions in dementia, which followed heterogeneous approaches under the PCC-concept. The heterogeneity made it challenging to identify a well-defined concept of PCC and common key intervention categories. An effectiveness-evaluation of “PC” - including “relationship-centered”-interventions may be valuable, to assess whether an explicit focus on relationships around PCC-interventions yields an added benefit.PROSPERO-ID: CRD42021225084.

Person-Centred Dementia Care in an Acute Hospital: Experiences from Nurses Working in a Specialized Dementia Unit

Background: Person-centred care (PCC) is synonymous with best practice in the care of persons with dementia. However, the research focus has been in long-term care settings with less attention in acute hospitals. We aimed to study the perspectives and experiences of nurses implementing PCC in an acute hospital dementia unit (Care for Acute Mentally Infirm Elders [CAMIE]). Method: This was an exploratory qualitative study involving individual, face-to-face, semi-structured in-depth interviews. A purposive sample of 10 nurses participated in the interview. We employed an inductive thematic analysis approach to analyse the qualitative data. Results: The findings highlighted the positive experiences, for example, meaningful connection with patients and the challenges, for example, managing challenging behaviour in providing PCC. The initial challenges were due to a lack of prior knowledge and experience. Through formal and informal learning, the nurses built confidence and competence, and also provided support to one other. They emphasized the importance of teamwork and camaraderie in the CAMIE team but raised concerns about the negative perceptions of non-CAMIE nurses on the value of their work. Conclusion: Despite the challenges, adequate knowledge and robust organizational level support are the key support for nurses to embrace PCC as their care ethos in the acute care setting.

Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

BackgroundDementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making.MethodsWe used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019.ResultsThe findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.”ConclusionThe participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

Person-centred care in dementia: Philosophy and challenges in implementation

Health care concept is increasingly moving away from medical, task oriented and professional driven model towards a holistic model of health care which values the needs of the persons and centred on the needs of the patients. This shift is described as person centred care. Despite the wide availability of literature, philosophy and evidence on the outcomes of the person centred care, barely it is an ideal in reality. This present article throws light on the philosophy and challenges of person centred care and tries to raise the awareness and understanding about person centred care for people with dementia and explores on the challenges underpinning person-centred care in dementia.Person centred care means, being “respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions”. Each individual has unique history, personality, values, right to dignity, respect and right to participation. PCC framework emphasises on the assumptions made about the people with dementia, care givers attitude, models and care practices, factors at organisational level, cultural factors as well as structural elements such as lighting and flooring. It is a holistic philosophy across the continuum of services which takes into account the specific needs of each person. The philosophy of person centred care focuses on “the abilities and strength of the person than the losses” and on “the person than on the condition”.Lack of clarity in understanding person centred care in dementia, lack of research evidence, not valuing the views and needs of people with dementia, organisational culture, task centred care culture, lack of resources. : To improve quality of life of people with dementia and for the better functioning of the people with dementia there is a need for greater implementation of person centred care. However the challenges in the implementation of person centred care are masking the achievements and positive aspects of the person centred care approach. The challenge ahead for dementia experts is to advocate and raise the awareness and understanding and to provide evidence based solutions in practically implementing person centred care and making it more real in practice than keeping it ideal in literature.

Qualitative Insights into the Working Conditions of Personal Support Workers in Long-Term Care in the Context of a Person-Centered Communication Training Intervention.

The current study reports on qualitative insights into the working conditions of personal support workers (PSWs) in long-term care (LTC) homes within the context of a person-centered communication training intervention. PSWs (N = 39) employed at one of four LTC homes in southwestern Ontario, Canada, participated in a series of 1-hour focus groups before, during, and after a 2-week person-centered communication training program for formal caregivers of persons living with dementia (PLWD). Textual data from focus group conversations were coded and organized into themes following an interpretive description research design. Three overarching themes emerged related to the working conditions of PSWs in LTC: (1) dementia care is complex, (2) there is a lack of trained staff to provide person-centered dementia care, and (3) residents' families are not appropriately situated in residents' care circles. Four overarching themes emerged related to the impact of those working conditions: (a) PSW occupational burnout, (b) poor resident care, (c) frustrated and disengaged families, and (d) PSW job attrition. These findings offer LTC employers and administrators opportunities to ameliorate working conditions to better support person-centered dementia care. [Research in Gerontological Nursing, 14(5), 245-253.].

Engaging in preferred computer activities and cognitive outcome

Valuing an individual’s choice in activities is important in person-centered dementia care. This study examined changes in cognitive function among long-term care residents with dementia, following engagement in preferred computer activities. Over a 7-week period, a total of 585 observational activity-monitoring logs from 26 participants were collected. The most frequently selected computer activities were playing computer games and watching audio-visual media. Cognitive function significantly improved more in participants who spent more than 580 minutes on computer activities than those who spent less. A regression analysis showed that time spent in playing computer games was the only predictor to explain changes in cognitive function. The findings suggested that engaging in preferred computer activities may not only be meaningful and enjoyable but also promote cognitive function.

Moving toward more person-centered dementia care

Moving toward more person-centered dementia care

Nursing home staff's perceptions of barriers and needs in implementing person‐centred care for people living with dementia: A qualitative study

This study explored nursing home staff's barriers and needs in implementing person-centred care for people with dementia. Person-centred care is an imperative international policy and the best-practice standard for dementia care. However, a gap exists between policy and practice. Moreover, there is a lack of qualitative studies that explored nursing home staff's barriers and needs in implementing person-centred care for people living with dementia. A qualitative descriptive approach was adopted. Using convenience sampling method, a total of 24 staff members (nurses, nurse's aides, or care workers) were recruited from six nursing homes in Korea. Two in-depth, face-to-face, one-to-one interviews were conducted with all participants (a total of 48 interviews). A semi-structured interview guide was used and field notes were written after each interview. Data were collected until data saturation was reached. Qualitative content analysis was used. This study followed the COREQ guidelines. Four themes emerged from data analysis: insufficient resources, lack of education, negative mindset and poor relationships. This study showed that nursing home staff experienced many barriers and unmet needs in implementing person-centred care for people with dementia. The findings indicated that nursing home staff faced many barriers and needs in implementing person-centred care for people with dementia. Nursing home staff need more legitimate, financial, educational and emotional support. The study indicates more national and organisational support are needed for nursing home staff to successfully implement person-centred care for people living with dementia. Nursing home leaders need to recognise the importance of their role in overcoming the barriers and provide effective support for staff in implementing person-centred dementia care.