SP - Health Service Research

Introduction
Dementia is a major challenge to healthy ageing, and research into dementia is essential. Including people with lived experience of dementia in research leads to higher-quality, more impactful outcomes. But successful engagement can be complex and routine involvement practices may not always be inclusive for people with living with dementia. This project aimed to highlight what is needed to improve public involvement in dementia research and support researchers in engaging those with lived experience.

Method
We collaborated with experts by experience (people living with Dementia) and dementia researchers to explore current PPI activities within NIHR-funded dementia research. Mixed method data collection included an online questionnaire and structured conversations, supplemented with web searches. Data was organised in MAXQDA and visually mapped in MindGenius, identifying patterns and gaps.  

Results
A diverse group of 38 participants, including researchers, healthcare professionals, funding panellists, and experts by experience, contributed. They emphasised that dementia affects individuals uniquely and involvement should be tailored to individual’s abilities and preferences. They encouraged avoiding assumptions and a focus on positive change, particularly for underserved communities. Creative approaches were highlighted as effective for prompting discussions and enabling non-verbal individuals to express their experiences. Openness to learning from lived experiences and adaptability were key in shifting from task-oriented to relational approaches and deepen understanding. However, participants also identified that rigid funding processes, limited resources, and a lack of understanding of involvement can undermine these practices. They emphasised the need for funder guidelines, ethical working frameworks, and supportive spaces for shared learning.

Conclusion
Promoting good practice in Patient and Public Involvement for people with dementia is critical to enhancing both research and impact. This work seeks to highlight examples of relational approaches that foster co-learning and meaningful engagement, and addresses structural barriers, providing supportive frameworks to achieve impactful and inclusive dementia research.
 

Older Patients’ and Caregivers’ Perceptions of and Attitudes to Deprescribing in Saudi Arabia: A Cross-Sectional Study

T M Alenzy1,2; C Parsons1; H E Barry1; S A Alkahtani3

1.School of Pharmacy, Queen’s University Belfast, Belfast, UK; 2. Department of Clinical Pharmacy, College of Pharmacy, Princess Nourah bint Adulrahman University, Riyadh, Saudi Arabia; 3. Department of Clinical Pharmacy, College of Pharmacy, Najran University, Najran, Saudi Arabia

Introduction: Development of effective deprescribing interventions requires thorough understanding of attitudes of relevant stakeholders involved in the medication decision-making process. This study aimed to examine older patients’ and caregivers’ perspectives on deprescribing in Saudi Arabian hospitals and explored factors influencing their attitudes.

Method: A survey study was conducted using the Revised Patients’ Attitudes Towards Deprescribing (rPATD) questionnaire (Arabic version), which was administered to older patients and caregivers recruited from two hospitals in southern Saudi Arabia through convenience sampling. Participants provided written informed consent and ethical approval was obtained. Descriptive analyses (frequencies and proportions) summarised beliefs about medication inappropriateness, burden, discontinuation concerns, involvement and two global questions. Bivariate analyses examined links between participant characteristics and questionnaire responses.

Results: Questionnaires were completed by 253 participants (126 older patients and 127 caregivers; response rate 87.00%). Most patients were aged 65-69 years (53.17%), married (78.60%), and taking 5-8 medications (65.07%). Almost two-thirds (65.87%) were satisfied with medications, and 88.10% were willing to have them deprescribed. Patients taking 5-8 medications showed significantly greater willingness for deprescribing compared to those taking ≥9 medications (p<0.001). Married patients were more involved in medication decision-making than non-married patients (p<0.05). Most caregivers were aged 25–34 years (38.58%) and married (75.59%). Their care recipients were primarily ≥80 years, with 67.71% taking 5-8 medications. Most caregivers (60.00%) were satisfied with care recipients' medications, and 82.68% were willing to have these deprescribed. Caregivers of care recipients taking ≥9 medications reported greater burden associated with managing medications (p<0.001).

Conclusion: Characteristics such as the number of prescribed medications influenced patients’ and caregivers’ perceptions of medication burden and willingness to have medications deprescribed, while marital status influenced involvement in medication decision-making among patients. These insights may be used to help guide hospital deprescribing interventions. 

Introduction: Dementia-friendly hospitals (DFH) are mentioned as one of several key initiatives in national dementia strategies. In our previous integrative review, we identified 17 descriptions of DFHs and analysed six characteristics of DFH: continuity, person-centredness, consideration of phenomena within dementia, environment, valuing relatives and knowledge and expertise within the hospital (Manietta et al., BMC Geriatrics, 2022, 22, 468, 1-16). We also learned that the term DFH is based more on healthcare practice than research. To address this research gap, one step of our DEMfriendlyHospital study is to examine the perspectives of professional dementia experts working in hospitals in Germany.

Method: We used a qualitative design and conducted 14 semi-structured interviews with professional dementia experts from various healthcare professions (12 nurses, two physicians, and one physiotherapist). Data were collected between November 2021 and March 2022. Using an inductive content analysis, we furthermore analysed the interviews in a participatory way involving a group of research associates and professional dementia experts.

Results: From the professional dementia experts’ perspectives, a dementia-friendly hospital needs to focus on the people with dementia, their relatives and also on the staff who care for them. A DFH is characterised by specific hospital processes, structures and environment which consider the needs of people with dementia, dementia-specific knowledge and the skills of hospital staff, their awareness and attitude towards people with dementia. A DFH needs the social inclusion of patients with dementia and their perception as a person as well as the involvement of relatives, who are an important support for the patients and their care.

Conclusion: There are links between our results from interviews with professional dementia experts and our integrative review. At the same time, the perspectives of patients with dementia and their relatives are underrepresented. To fill this gap, our next step is to interview people with dementia who are hospitalised and their relatives, aiming to enhance the description of a DFH and its characteristics.

Introduction
Stress and communication difficulties, both prone in people with dementia, are risk factors for challenging behaviour. Challenging behaviour negatively impacts the quality of life of people with dementia and their caregivers. Technology can help caregivers detect stress in people with dementia. However, implementation of these technologies is not always successful. The aim of this study is to explore the implementation opportunities for a garment-integrated sensor system that enables caregivers to identify early signs of stress in people with dementia.

Methods
A qualitative design with online focus groups (n=9) and interviews (n=21) with persons living with dementia (n=4), family (n=10) and professional caregivers (n=9) was used to collect stakeholders’ perceptions towards the sensor system and requirements for its implementation into long-term care. Participants took part in three focus groups or interviews, of which the last round focused on implementation. Qualitative data were analysed using inductive conventional content analysis.

Results
Participants were positive about the idea of a garment-integrated sensor system and could see several groups in both intramural and extramural healthcare settings benefit from the system. Besides early stress detection, participants also saw an added value of the system for the identification of triggers for challenging behaviour or for diagnostic purposes. According to participants, implementing the system in long-term care requires clear guidelines and agreements for its use, a trial period and educating caregivers. The sensor system needs to meet several requirements (e.g. customizability, ease of use) to increase user acceptance and thereby implementation success.

Conclusions
Participants perceive the idea of a garment-integrated sensor system for people with dementia in long-term care as positive. To increase implementation success, it is important to create an easy-to-use, tailor-made system, educate stakeholders, and establish clear guidelines for its use. The next step is to validate and implement the system in long-term care.

Introduction

NHS England is committed to the expansion of virtual wards, necessitating patient engagement with home care technology. Literature suggests there is a technology adoption lag among older populations. We investigated if this lag was evident in geriatric virtual ward patients.

Methods

Data from three NHS trusts using a virtual care  platform (March 2021-August 2023) were aggregated to assess differences in perceived ease of use, technology adoption style, and measures of adherence. All patients received the Telehealth Usability Questionnaire Ease of Use (EOU) subsection (higher scores indicate higher EOU). Patients completed surveys via tablet, wore monitoring devices, and took blood pressure readings. We dichotomized age (<75 vs. 75+) and used Fisher’s exact and Wilcoxon-Mann-Whitney tests.

Results

Of 857 patients, 36.9% were geriatric (mean age 81.5 years). The younger group (mean age 59.1 years) had 541 patients. Gender was evenly split between age groups (p=0.62). Median EOU scores were 5.5 (geriatric) and 6.2 (younger) (p<0.001). Geriatric patients were more likely to avoid or delay technology adoption (82% vs. 56% in younger patients, p<0.001). Geriatric patients had higher adherence to the wearable device (median 95.3%) compared to younger patients (93.3%, p<0.001). Blood pressure (median 81.6%) and survey adherence (median 83.3%) did not significantly differ between groups (p=0.076, p=0.0501).

Conclusions

Despite perceptions and literature suggesting older patients are less comfortable with technology, our findings demonstrate high engagement in virtual ward technology. While differences exist in technology adoption and EOU scores, geriatric patients exhibit equal or higher adherence to remote monitoring tasks. These results challenge stereotypes and underscore the importance of incorporating technology in geriatric care.

Introduction

Increasing prevalence of people living with frailty is a key challenge to healthcare providers. One solution may be virtual wards (VWs). Our research sought to: examine different frailty VW models; and determine how, why and under what circumstances VWs may work effectively. During our early research, NHS England (NHSE) started roll-out of short-term VWs intended to treat acute patients with frailty crises at home instead of hospital. We expected our work to inform NHSE policy, especially how to ‘do’ VWs better.

Methods

We conducted a rapid realist review of frailty VWs, searching published and grey literature for evidence on multidisciplinary VWs based in the UK, using a literature-based definition of VWs. Information on how and why VWs might ‘work’ was extracted and synthesised iteratively into context-mechanism-outcome configurations (CMOCs). Throughout we engaged closely with clinicians and patient/public contributors. The iterative nature of the realist review led to emerging understanding.

Results

From 28 documents, we identified two VW models: longer-term, proactive care wards admitting patients at high risk of a frailty crisis; and short-term reactive care wards for people experiencing a frailty crisis. Using evidence from both models, we generated 12 CMOCs, under three themes. First, building blocks for effective VW operation (e.g. common standards agreements, information sharing, a multidisciplinary team planning patient care remotely). Second, how the VW delivers the frailty pathway (e.g. patient selection, assessment, proactive care). Third, Patient/Caregiver empowerment. Mechanisms included motivating professionals (e.g. a ‘team-of-teams’); buy-in; building relationships: professionals, patients and caregivers. VWs should be set within frailty management guidance, and a whole-system approach to care is needed. For sustainability of VWs, proactive care for people at high risk of a frailty crisis should be provided.

Conclusions

This review has implications for optimal implementation and sustainability of frailty VWs, through proactive care and a whole system approach.

Introduction

People from ethnic minorities are 1.5 times less likely to use digital technology. Within Brighton and Hove, 2021 Census reports that 26.1% described themselves as non-White-British categorised as other White (11.5%), Mixed Race (4.8%), Asian (3.7%), Black (2.0%), Chinese (1.1%), Arab (1.1%), and Other (2.0%). The aim of the project was to understand the lived experience of older ethnic minority adults in Brighton and Hove with digital technology, and how this experience affects their potential engagement with research.

Methods

Older people from ethnic minorities were identified through Brighton and Hove Health Watch, Bridging Change, Sussex Interpreting Services, and Black and Minority Ethnic Partnership. Using a mixed-methods approach, focus group and one-to-one meetings were held with 22 people, exploring their digital literacy, using a Likert scale, and preferences for research engagement using digital means. Meetings were transcribed and thematic analysis was undertaken.

Results

The group average age was 71.6 years. Six identified as male, 16 as female, and confidence with digital technology averaged 3/5 (5 representing high confidence). Variation of digital skills was observed, with older age and language barriers limiting digital access. Digital technology was used for social, transactional and health purposes (booking GP appointments, receiving test results, and GP consultations). Trust and confidence in the research team enhanced the group’s likelihood to engage digitally. Explaining the research in their own language would be an incentive. Younger family members can help explain digital elements. Offering choice of digital alongside traditional methods was important. There was a preference for initial research conversations to be in person. Willingness to engage is higher when the research topic is common in their community or they are personally affected.

Conclusions

Older people from ethnic minorities in Brighton and Hove are willing to engage in research using digital means if tailored to their social circumstances.

Introduction:

Receiving a dementia diagnosis can be overwhelming for persons living with dementia (PLWD) and their carers. Accessing information and home supports can be challenging.  Having access to a Patient Navigation (PN) program is one way that may assist PLWD and their carers.

Methods:

This study used a mixed methods design and involved the implementation of a Patient Navigation (PN) program in 6 primary care settings in New Brunswick, Canada, between July 2022-July 2023. PLWD/carers living in their own homes were eligible to enroll.

Results:

There were 150 PLWD with a mean age of 76.77 (SD = 9.2) years and 51.8% were female. The majority (60.7%) were living in rural communities. Most (53.7%) had been diagnosed within the past 2 years with 50.7% having seen a specialist, most commonly a geriatrician.  Almost all (88.7%) had a primary care provider; however, only 25.2% were connected to the social care system, and 19.8% were connected to the home care system.  The most common reasons for enrolling were gaining access to social programs and home supports and seeking dementia specific information.  The average number of goals per PLWD/carer was 3.77 (SD=1.7). The average time in the program was 116.79 days (SD= 91.08) and 76.6% achieved their goals.  The majority (84.0%) were somewhat to very satisfied with the PN program. Carers stated that with increased knowledge, access, and support there was a decrease in social isolation as well as improved confidence, which allowed PLWD to remain in the community longer.

Conclusions:

Most PLWD/carers were connected to the health system, but the minority were connected to social and home care programs. Through connection to the PN program, carers increased their confidence; improved their knowledge; and increased their access to home supports and other care programs, allowing PLWD to remain in the community longer.

Introduction:

Navigating dementia care is challenging, but patient navigation (PN) offers valuable support for this population. The "Navigating Dementia NB / Naviguer la démence NB" program piloted a PN program in New Brunswick, Canada, targeting people living with dementia (PLWD) and their carers. The program aimed to assist participants in navigating health and social care systems, matching their needs with available services.

Methods:

Navigating Dementia NB was co-developed by researchers, patient partners, and clinicians. This pilot program embedded six PNs in primary care clinics/centers across the province between July 2022 and July 2023.  Using a mixed methods approach, participant surveys and interviews were used to explore program benefits and recommendations for improvement. Focus groups were used to explore facilitators and barriers to program development and implementation.

Results:

There were 150 participants (PLWD and carer dyads) enrolled in the PN program who provided informed consent. Interviews were conducted with 36 PLWD and their carers. Focus groups were conducted with nine members of the research team and five patient navigators.  Program benefits included: emotional support from navigators, provision of relevant information, and facilitating connections to appropriate services. Recommendations for improvement included: the need for PLWD and their carers to have access earlier in the patient journey and the need to reassess provincial policies related to home care support. Facilitators for implementing a PN program included: providing appropriate staff training and leveraging established connections within the health and social systems.  Barriers included a compressed timeline and existing systemic issues to service access.

Conclusions:

The findings suggest that embedding PN for PLWD in community based primary care can be done.  The program was beneficial for PWLD and their carers. Future plans involve partnering with government to support the implementation and evaluation of a province-wide scale-up of the PN program for this population.

The introduction of an additional meal in nursing homes may be associated with a positive impact on the BMI of residents with dementia.

Abstract

Background

Since 2010, many nursing homes in Norway have introduced an extra meal daily, with a hot lunch, and pushing dinner to later in the day. This initiative aims to reduce the long time interval between breakfast and supper.

Aim

This study examines how an extra meal affects the residents' body mass index (BMI) at nursing homes in Norway. Research questions include how an extra meal affects BMI among residents in the dementia unit.

Methods

We used a cross-sectional design to analyze data from residents over 65 years old in dementia care units. Both parametric and non-parametric statistical tests were used to evaluate changes in BMI.

Results

Our study identified a modest increase in BMI among residents in the dementia care unit after introducing an additional meal. The results imply that incorporating an extra meal to meet residents' needs could support the maintenance of a healthy BMI.

Discussion

Our study reveals that the introduction of an extra meal resulted in a slight increase in BMI among the residents with dementia, which does not correspond with previous studies indicating malnutrition among these residents. The dementia disease reduces functional abilities, and challenges related to mealtime behavior, restlessness, and depression can lead to weight loss. The fact that our results show a slight increase in BMI at the dementia units may be related to these residents often being troubled with restlessness and not finding the peace to consume a full meal. By introducing an extra meal, the total food intake increases since residents still eat a little at each meal, and focusing more on accommodating each resident might have influenced the increase in BMI values.

Conclusion

The study indicates that the introduction of an extra meal has a positive effect on the BMI value of residents with dementia in nursing homes.