Dementia is not an unavoidable consequence of aging, but for most home-dwelling people with dementia (PwD) a result of complex chronic health conditions. About 95% of PwD have multimorbidity, which requires a multicomponent approach and interdisciplinary collaboration to support patients and relatives, and to implement welfare technology and smart solutions.

The LIVE@Home.Path study is a 2-year, mixed-method, stepped-wedged, cluster randomized controlled trial, including home-dwelling PwD and their informal caregivers (N=320 dyads) in Norway (May 2019 – December 2021), to investigate the efficacy of the multicomponent LIVE intervention (LIVE is the acronym for Learning, Innovation, Volunteerism, and Empowerment) on resource utilization and use of welfare technology. The intervention was implemented by a skilled coordinator from the municipality with high focus on use, usefulness, and experiences in welfare technology, both at baseline and during the implementation period.

At baseline, we found that most participants had traditional equipment such as stove guards (43.3%), social alarms (39.5%) or everyday technology (45.3%) (e.g., calendar, door locks). A social alarm was more often available for alone-living elderly women, while tracking devices (14.9%) were associated with lower age. Everyday technology was more often available for women at increased age, higher comorbidity, and poor instrumental activities of daily living (IADL). In people with severe dementia, welfare technology was associated with poor IADL function, children as the main caregiver (61.3%), and having caregivers who contributed 81–100% to their care (49.5%).

We describe unmet potential for communication, tracking, and sensing technology and especially, for devices not offered by the municipalities. In our symposium, we will present early findings on the implementation effect of welfare technology and participants experiences related to usage and awareness.

Outcomes and care experiences for people with dementia are worse than for those without the condition and the workforce is in crisis. High quality care requires adequate training that includes an understanding of those living with the condition.

Time for Dementia is an educational programme in which healthcare students visit a person with dementia and their family carer over a two-year period (Banerjee et al., 2017). People with dementia and their carers are our ‘experts’ and teach students about life with dementia, healthcare experiences and what helps them to live well with dementia. The aim of the programme is to improve student attitudes, knowledge, and empathy towards dementia.

Since 2014, 6500 healthcare students, including medical, nursing and allied health professions, have undertaken the programme in the UK at 7 different universities. Research indicates that there are higher levels of knowledge and positive attitudes in students undertaking the programme, compared to those who did not. This symposium will present several sub-studies outlining what has been learned so far from the mixed methods evaluation of Time for Dementia. The symposium will include 3 speakers on 3 key themes:

1. 1. The development and delivery of Time for Dementia programme and educational outcomes for students.

2. 2. The factors influencing career preferences for working with people with dementia.

3. 3. The development of empathy towards people with dementia in undergraduate healthcare students

Key take-aways

• How to deliver a lived experience programme at scale.

• The value of a lived experience education programme.

• How undergraduate education can shape empathy and career preferences.

The future healthcare workforce needs the skills, attitudes, and empathy to better meet the needs of those with dementia. Time for Dementia is an educational programme in which healthcare students from a range of professional groups visit a person with dementia and their family carer over a two-year period. The first phase of research demonstrated positive outcomes for students (Banerjee et al., 2021; Daley et al., 2020). Here we discuss the most recent findings from the second phase.

to evaluate the impact of Time for Dementia on student attitudes, knowledge and empathy towards dementia, and satisfaction of students and families.

A mixed methods longitudinal cohort study was conducted between 2014- 2021. Measures of dementia knowledge, attitudes and empathy were administered to healthcare students at five universities in the south of England before and after (24 months) they completed the Time for Dementia programme. Data were also collected at equivalent time points for a control group of students who had not taken part in the programme. Outcomes were modelled using multilevel linear regression models. Satisfaction surveys were completed by students and families at the end of the programme.

2,700 intervention group students, 562 control group students and 803 families consented to participate in the research. Students undertaking the Time for Dementia programme had higher levels of knowledge and positive attitudes at follow-up compared to equivalent students who did not undertake the programme. Satisfaction was high for both students and families, with both perceiving benefits of taking part.

The results suggest the Time for Dementia programme is effective in improving the knowledge and attitudes of healthcare students across different professional groups and universities. It also demonstrates that dementia education that meaningfully involves people with dementia and their carers can be delivered at scale for healthcare professionals.

With population ageing, an emergent issue in workforce planning is how to ensure that future healthcare professionals are both competent and willing to work with older adults with complex needs. This includes dementia care; which is widely recognised as a policy and practice priority. Yet research suggests that working with older people is unattractive to undergraduate healthcare students. However, how students view a career working with people with dementia is not well understood, in either related specialities (such as geriatrics or old age mental health) or as a general clinical interest.

This sequential mixed methods study aimed to identify the factors that contribute to preferences for working with people with dementia. A summary of three papers will be presented:

1. 1) Preferences of nursing and medical students for working with older adults and people with dementia: a systematic review.

2. 2) Preferences of newly qualified healthcare professionals for working with people with dementia: a qualitative study (n=27).

3. 3) Student nurses' career preferences for working with people with dementia: A longitudinal cohort study (n=840).

The findings from these studies have contributed to the development of a conceptual framework for understanding career preferences for working with people with dementia in students and newly qualified nurses. key factors related to dementia preferences include:

• Student characteristics (e.g. gender, attitudes and knowledge) and whether students perceive their attributes are aligned with dementia care;

• Impact of experiences including dementia educational programmes;

• Importance of making a difference to patients’ lives;

• Perception of working with people with dementia as a ‘different type of care’;

• Perceptions of people with dementia including care challenges;

• Career characteristics.

The findings will be discussed in relation to implications for education and policy for how preferences for working with people with dementia may be developed in line with workforce needs.

Globally, dementia prevalence is rising. In the UK, over a million people are expected to be impacted by dementia by 2050. One in four hospital beds are occupied by a person with dementia, and it is inevitable that healthcare professionals will work with people with dementia during their career and across a variety of settings. To deliver effective person-centered care, healthcare professionals need to have the capacity and skills to practice with empathy. Greater empathy can lead to better patient relationships, reduced burnout, and enhanced recognition of personhood. However, people with dementia frequently report episodes of care that lack empathetic approaches. To improve the quality of care, high quality dementia education needs to be provided at undergraduate level. To inform the design and delivery of suitable educational resources, this study aimed to understand the major factors that impact the development of empathy towards people with dementia during undergraduate education.

A constructivist, longitudinal grounded theory study (Charmaz, 2014) was conducted. Data were collected in 2019 using semi-structured interviews with undergraduate nursing, physiotherapy, and medical students (n=30). A second interview was completed with students (n=26) eighteen months later. Emergent findings were informed by simultaneous data collection and analysis using constant comparison techniques, and the use of theoretical memo writing.

Preliminary findings suggested that the development of empathy towards people with dementia was impacted by social and emotional exposure during undergraduate years. Data centered on four sub-categories. While there were barriers connecting and understanding people with dementia, students experienced conflicting expectations about empathy more widely. Positive and negative cultural experiences during placement led to emotional changes and a shift in ideals.

Environments that promote empathetic practice during clinical placement could impact the development of empathy in undergraduate healthcare education more widely. This study highlights a need for educational design that focuses on both the patient and the environment.

In the years since the beginning of the SARS-CoV-2 pandemic, research has revealed that patients with infection can experience cognitive and other neurological symptoms that do not always remit following infection clearance. Older people tend to be at particularly high risk of decline following infection.

This symposium will report studies of post-acute sequelae of Covid-19, with particular attention toward cognitive and other neurological symptoms in an aging population. It will emphasize the importance of methodological rigor in studies going forward, including large and representative samples and comprehensive, longitudinal cognitive assessments.

The symposium will consist of three talks and discussion.

The first talk will summarize what is known about cognitive symptoms in post-acute Covid-19 and discuss biological and environmental mechanisms that may account for these symptoms. Importantly it will propose ways in which ongoing and future studies of post-acute cognitive symptoms can enhance scientific rigor and make recommendations for assessment and management of patients with post-acute cognitive sequelae of Covid-19. The second talk will review first- and second-wave findings of cognitive functioning in the context of neurological, pulmonological, and other psychological and daily functioning factors from a longitudinal study of recovered asymptomatic, severe, and never-infected patients. It will reveal small to medium sized effects of Covid-19 disease status in several areas of cognition, in addition to other medical outcomes, with more severe effects found in older adults relative to younger people. The third talk will present data collected in 139 older adults approximately seven months after diagnosis with Covid-19. It reports higher levels of subjective (67.2%) relative to objective (4.7%) cognitive dysfunction and finds that severity of subjective cognitive dysfunction was predicted by psychiatric distress, but not demographic, illness, or objective cognitive functioning.

Cognitive decline can occur following infection with Covid-19, and older adults are at particularly increased risk relative to the general population. Objective assessment of cognitive functioning is imperative, and future studies must employ rigorous scientific methodology to elucidate the nature and trajectory of cognitive functioning in post-acute Covid-19. Findings will inform best practices for diagnosing and managing cognitive impairment in clinical populations.

Covid-19 infection is associated with increased rates of acute and post-acute cognitive dysfunction that may portend significant consequences for patient functioning and quality of life.

This lecture will 1) summarize what is known about cognitive symptoms in post-acute Covid-19; 2) discuss biological and environmental mechanisms that may account for these symptoms; 3) propose ways in which ongoing and future studies of post-acute cognitive symptoms can enhance scientific rigor; and 4) make recommendations for assessment and management of patients with post-acute cognitive sequelae of Covid-19.

The literature on post-acute Covid-19 sequelae was reviewed, with particular attention toward limitations in methodology.

Depending on how it is assessed, Covid-19 cognitive dysfunction occurs in a subset of patients (~ 24%) of all age groups, across the spectrum of disease severity, and may persist following viral resolution. Early cognitive studies were limited by methodological shortcomings, secondary to Covid-19’s virulence and transmissibility. Most studies have resorted to suboptimal cognitive assessments such as self-report measures, which are distal measures of brain functioning, or brief dementia screeners that provide objective data but are insensitive to subtle cognitive impairment. Small sample sizes also plague existing studies, resulting in low power, limited external validity, and an inability to properly control for potential confounders. Despite the disproportionate impact of COVID-19 on racial and ethnic minorities, these populations remain underrepresented in cognitive studies. Further, the degree to which pre-existing risk factors for cognitive impairment and other pandemic-related factors (e.g., social isolation, depression, anxiety, PTSD) may contribute to post-COVID-19 cognitive dysfunction are unknown, marking the need for appropriate comparison groups. The range and severity of cognitive sequelae are varied. There appear to be meaningful differences in the experiences of COVID-19 patients who were hospitalized versus those who were not. Similarly, younger individuals greatly differ from older individuals in terms of pre-existing risk factors, comorbidities, and consequently, cognitive profiles.

While studies to date examining subjective and objective post-acute Covid-19 cognitive functioning have been invaluable in unmasking post-acute neuropsychiatric symptoms of Covid-19, it is imperative that future studies employ rigorous methodological approaches across diverse samples. In the meantime, patients’ complaints of post-acute cognitive decline must be taken seriously, but also measured objectively, with a consideration toward pre-existing factors that portend greater or lesser likelihood of cognitive difficulties following Covid-19 infection.

Clarity about the common cognitive phenomena associated with “brain fog” and attention or memory problems after the initial resolution of COVID-19 infection is needed.

To systematically study cognitive sequelae in the context of neurological, pulmonological, and other critical psychological and daily functioning factors.

160 participants were seen at three study visits over 12 months. Participants comprised 52 Asymptomatic/Mild (ASY) remitted Covid-19 patients, 52 severe (SEV) remitted Covid-19 patients and 56 control (CTL) participants. Neurocognitive function, pulmonary health, neurological status, serum biomarkers NSE and Nf-L, and neuroradiological scans were assessed at baseline and 12 months. A shorter examination of neurocognition, lung function, and neurological status only was conducted at the 6-month visit (Visit 2).

In initial analyses of the first wave of data, complex attention, language, and short-term verbal and visual memory differed between healthy controls and Covid-19 patients. Generally, the neurocognitive performance of the ASY cohort lay between that of the more SEV and CTL. There was a similar pattern of results regarding lung function and brain volume. No differences were found for serum biomarkers NSE or Nf-L. Currently, the second wave of data is almost finished being collected. Data collection will be complete in early Spring of 2023. Initial longitudinal findings will be analyzed and presented.

Small to medium-sized effects of Covid-19 disease status in several areas of cognition (language, complex attention, and short-term memory), certain aspects of neurological function, pulmonary function, and brain morphology were found at the baseline visit. Older adults were more likely to be severely affected by Covid-19 and thus more severely affected from a neurocognitive perspective than younger age groups.

Subjective cognitive dysfunction is often reported following SARS-CoV-2 infection. Studies of outpatients and primarily younger adults suggest that mood symptoms and fatigue are also common and may contribute to subjective cognitive dysfunction.

Understanding factors driving subjective cognitive dysfunction is important to guiding treatment interventions for older patients with persistent post-COVID-19 cognitive complaints.

We will present data demonstrating the demographic factors, illness characteristics, psychiatric symptoms, and objective cognitive performances that predict persistent subjective cognitive dysfunction in older post-COVID-19 patients and contrast these with findings from their younger counterparts.

Approximately seven months after COVID-19 diagnosis, patients in the Johns Hopkins Post- Acute COVID-19 Team (JH PACT) multidisciplinary clinic underwent a telephone-based clinical assessment evaluating depression, anxiety, fatigue and subjective cognitive complaints. Patients also completed objective tests of neuropsychological functioning assessing processing speed, language, learning, memory, and executive functioning. Of the >400 patients assessed to date, 139 were ≥60 years of age (M 67.9; 60.4% female, M education 14.1 years, 54% ICU).

In preliminary analyses among older adults, a greater proportion of patients reported subjective cognitive dysfunction (67.2%) relative to the proportion producing a cognitive composite ≥1.5 SD below expectation (4.7%). Psychiatric symptoms were also common (PHQ-9 ≥ 10 in 22.5%, GAD-7 ≥ 10 in 12.3%). Linear regression models revealed that among older adults, severity of subjective cognitive dysfunction was predicted by psychiatric distress, but not demographic, illness or objective cognitive functioning. In contrast, subjective cognitive difficulties were predicted by a combination of demographic, illness, and objective cognitive variables among younger patients.

Among patients followed in a long-COVID-19 clinic, we observe high rates of clinically significant psychiatric distress and subjective cognitive dysfunction but relatively less frequent objective cognitive deficits. Among older adults, cognitive concerns appear driven by neuropsychiatric symptoms and may be appropriate targets for intervention. We will present ongoing work evaluating predictors of cognitive complaints including performance across specific cognitive domains in > 400 patients.

Internationally there is a growing interest in evaluating experienced quality of care to better tailor care to resident’s needs. Narratives are a promising method to achieve this, because they capture experiences, identify conflicting values, and provide rich data that can be used to learn from and improve quality of care with. In the Netherlands, narratives are becoming a more substantial element within the quality improvement cycle of nursing homes. In this symposium, four Dutch research groups will present studies on how different narratives can be used and implemented in nursing homes to achieve and maintain high quality of care for residents.

The first speaker will present how micro-narratives from care staff, residents and significant others enable the evaluation of long-term care. The second speaker will present how stakeholders improve care by reflecting together on rich narrative portraits of residents’ experiences. The third speaker will present the results of a study investigating how the narrative quality evaluation method ‘Connecting Conversations’ can be implemented in nursing home organizations. And, the last speaker will present findings on how the Dutch healthcare inspectorate is currently overseeing the quality of person-centred care in long-term care facilities and discuss the potential of a more reflexive approach using narrative methods.

The narratives of care staff, residents and significant others (SOs) about their personal experiences with care offer insight into their perceived care quality. This information enables the co-creation and evaluation of good care. Therefore, we aimed to develop a method to systematically collect and reflect on micro-narratives, on multiple levels.

From January 2020 to April 2022, we conducted a participatory action study in two care home locations. By continuously following the cycle of action research, we collaboratively worked on the content development, organizational implementation, and technical realization of our method. We used a distributed ethnography software tool (SenseMaker®) as the starting point. Input from care staff, residents and SOs was obtained through participatory observations, interviews, focus groups, and informal conversations.

Together, we developed Experience Matters, a method for collecting, sharing and reflecting on micro-narratives about personal experiences with care. In Experience Matters, care staff, residents and SOs share their experiences as micro-narratives and add meaning to them by answering a number of quantitative questions. The answers to these questions are attached to the micro-narratives as metadata. Using this method, the micro-narratives and metadata can be used to co-create and evaluate care for individual residents (micro-level application) and care provided by a team (meso-level application), and to develop quality policy and accountability reports (macro-level application). Care staff indicated that using Experience Matters contributes to job satisfaction, team spirit and feelings of empowerment. Residents reported increased feelings of equality, and SOs felt more involved in the care process. Lastly, managers and directors indicated that the method leads to real-time insights into the quality of care.

Collaboratively developed with all stakeholders, Experience Matters enables collecting, sharing and reflecting on micro-narratives for the co-creation and evaluation of good care. To implement the method effectively, organizations may consider deploying Experience Matters as part of a larger transition towards being a learning organization.

Collective learning is a widespread aim in long-term care. When professionals share detailed information on their perspective regarding quality of care, they can enter each other’s perspective and create a new joint perspective which may generate a broader meaning together. Reflective spaces are helpful in learning processes as tacit and explicit knowledge is bridged when people come together to reflect on concrete care practices. This study aimed to evaluate the use of the narrative quality instrument ‘The story as a quality instrument’ as a means for collective learning to realize quality improvement.

A qualitative evaluation was performed in 2021-2022 on six field sites of four large care organizations providing long-term care to older adults in the Netherlands. On every field site. The story as a quality instrument was applied: an action plan was formulated based on narrative portraits of older adults in a quality meeting and 8-12 weeks later the progress was evaluated. The data collection concerned the transcripts of both meetings and the observation reports of the researchers. Data were analyzed using thematic analysis.

Four mechanisms became visible that stimulate learning among participants to reach quality improvement: in-depth discussion, exchange of perspectives, abstraction, and concretization. The participants reported on several outcomes regarding individual learning such as change of attitude, looking to older adults more holistically and the realization that possibilities to work on quality improvement could be small and part of everyday work. Participants learned from each other, as they gained insight into each other’s perspectives. The added value concerned getting insight into the individual perceptions of clients, the concrete areas for improvement as outcome, and the diverse people and functions represented. Time was found to be the main challenge for the application of the instrument. Furthermore, the anonymity and quality of the portraits, structural embedding of the instrument and communication were four main conditions for future execution.

The story as a quality instrument is deemed promising for practice, as it allows care professionals to learn in a structured way from narratives of older adults in order to improve the quality of care.

Connecting Conversations is a narrative method that assesses experienced quality of care in nursing homes from the resident’s perspective. This study aimed to identify facilitators and barriers in implementing Connecting Conversations.

In 2022, Connecting Conversations was actively implemented in a nursing home organization where the organization was in the lead. A process evaluation was performed focused on completeness (to what extent did the planned wards complete participation?), value and burden (how did respondents, care teams, ward managers and interviewers experience Connecting Conversations?), and usability of the findings (to what extent was the narrative data used for quality improvement initiatives?). Data were collected with interviews, focus groups and structured observations.

In 2022, 6 internal interviewers followed the Connecting Conversations’ interviewer training and performed 42 conversations (13 residents, 14 family, 15 caregivers) in 4 nursing homes on 5 wards within the care organization.

Findings show that vision & leadership, flexibility in performing the conversations, and clear instructions for respondents and participating wards are necessary for successful implementation. Identified barriers for implementation into the quality management cycle were the continuation of existing quality assessments, lack of resources and the administrational burden linked to research, such as randomization of participants and retrieving informed consent. In addition, it was identified as crucial to provide participating care teams ownership regarding how to use the data for learning and improvement initiatives. This process needs guidance from for example an internal facilitator.

Stories from multiple perspectives provide valuable information for quality improvement initiatives. Yet, in order to implement Connecting Conversations successfully organizational support is indispensable

The emphasis on person-centred nursing home care poses a key challenge for inspectors who regulate quality of care, because of its situated characteristics (i.e., for each client different and changing over time). This makes it difficult to assess with predetermined norms in contrast to for example requirements of medication safety. In this paper, we therefore empirically investigate how inspectors operationalize and evaluate open norms of person-centred care in the Dutch healthcare setting.

Qualitative methods were used to study the work of inspectors who assess the quality of nursing home care within the Dutch Health and Youth Care Inspectorate. The first author7it observed the inspection process of nursing home care organizations (preparation, inspection visit, consults between inspectors and team meetings) and conducted semi-structured interviews with the observed inspectors and managers of the assessed organizations. Furthermore, different versions of the quality report were analyzed.

Easy made operationalizations of person-centred care (e.g., choice for meal) received more attention than other, less easily made, operationalizations of person-centered care (e.g., group dynamics). The following three exclusion mechanisms show why certain aspects of person-centred care got less attention than others: 1) not being able to triangulate information 2) doubting the trustworthiness of a person 3) not being able to deviate from the structure of the inspection program. Furthermore, there are two exclusion mechanisms that show how the assessment of person-centred care is ignored or overruled by other values in the assessment framework: 1) downplaying person-centredness by mitigating circumstances and, 2) prioritization of safety risks over risks of lacking person-centredness.

In evaluating person-centred nursing home care using open norms, certain mechanisms are in place that exclude the assessment of quality of (certain aspects of) person-centered care. To overcome these mechanisms, a different, more reflexive approach for regulation might be needed to encourage stakeholders to engage in self-observation and self-criticism. Reflexive regulation using narrative methods can be especially helpful with complex issues, which are associated with uncertainty about standards and where different perspectives play a role. In further participative action research, we will experiment with and study the use of reflexive regulation using narrative methods in long-term care.

Around 95% of Chinese with dementia in Australia and China reside at home and are cared for by family members. The World Health Organization (WHO) iSupport program has been translated into simplified and traditional Chinese and culturally adapted to the Chinese populations in Australia, Mainland China, Taiwan, Hong Kong and Macau. The objective of this study was to explore family caregivers’ experience in a 6-month randomized controlled trial of a facilitator-enabled iSupport intervention program that includes the utilization of the online iSupport and peer support activities.

A qualitative descriptive design was applied to address the study objective. Caregivers’ interactions with peers and program facilitators in monthly online meetings were audio-recorded and transcribed verbatim for data analysis. Facilitators were required to document their support for caregivers in their monthly portfolios and submit for data analysis. Thematic analysis was used to analyse data collected from online caregiver meetings and facilitator portfolios.

Five main themes were identified from data. First, caregivers were able to follow the group learning goal to complete their monthly learning activities using the online iSupport. They were also capable of selecting additional learning units from iSupport to meet their individual learning needs. Second, caregivers perceived that iSupport enabled them to change their responses to changed behaviours their care recipients had by which they reduced the sources of stressor in their daily care. Third, caregivers were willing and felt safe to share their stressors and seek help from peers and facilitators in group meetings. Fourth, caregivers demonstrated their enthusiasm to help their peers reduce their stressors and social isolation by searching and sharing various electronic resources via Wechat or Whatsapp platform throughout the trial. In addition, facilitators were able to assess caregivers’ learning needs and link them with relevant care services and resources accordingly.

Facilitator-enabled iSupport intervention in our study demonstrated advantages of engaging caregivers in learning iSupport, applying knowledge into daily care activities, sharing experiences with and supporting other caregivers.

Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.

We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.

Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.

Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.