Dementia

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.

Background: Clinical pharmacists are increasingly working as part of primary care teams in UK. Many people living with dementia live at home with the support of primary care. Given the complexity of their health problems and their use of several medications, clinical pharmacists may potentially play a crucial role in their support Aims: To explore clinical pharmacists’ experiences of working in primary care with people living with dementia and identify any specific training needs to provide effective support for this patient group.

Methods: An online survey sent via email in 2023 through professional organisations, social media, and utilising research team contacts. The survey covered topics including clinical pharmacists’ background, experience of working with people with dementia, and training needs.

Results: 57 clinical pharmacists responded to the survey; the meantime working as a clinical pharmacist was 9.6 years (standard deviation 8.6) and within a primary care setting was 6.1 years (standard deviation 6.1). Just over three-quarters of respondents (n=31, 77%) work with people living with dementia. While almost two thirds (n=35, 61%) had undertaken training for dementia care, such training often lasted a few hours (less than a day) (n=17, 49%). Most respondents (n=39, 89%) wanted further information or training; including non-pharmacological interventions to improve quality of life in dementia and how to support carers and relatives. Practice challenges reported included a lack of face-to-face consultations and getting assurance that the patient could safely take medications.

Conclusions: These findings indicate an interest in dementia care, a willingness to undertake further training but practice uncertainties that suggest a system approach might be beneficial.

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.

Objectives: The objective of this study was to examine participant’s experience with remote delivery during SYNERGIC@Home/SYNERGIE~Chez soi (NCT04997681), a home-based, double-blind, randomized controlled trial targeting older adults at risk for dementia. Metrics included study adherence, adverse events (AEs), participant’s attitudes towards technology, and protocol deviations (PDs) due to technological difficulties. Methods: Participants underwent 16 weeks of physical and cognitive interventions (three sessions/week) remotely administered in their homes via Zoom for Healthcare^TM. Participants used a laptop, webcam, and required email and internet access. Throughout the trial, adherence, AEs, and PDs were recorded. Post- intervention, survey questions about satisfaction with technology were administered and semi-structured interviews were conducted which underwent thematic analysis. Results: Sixty participants, mean age 68.9 and 76.7% female, were randomized to one of four intervention arms, with 52 completing the 16-week intervention. Adherence rate was 87.5% with no significant difference between treatment arms (p=0.656). There were 88 AEs reported in 42 participants. The majority (71.6%) of AEs were unrelated to the intervention, and 69.3% were classified as mild. There was one serious AE, unrelated to the intervention. Most (74.9%) participants reported overall satisfaction with technology, with Zoom being both enjoyable (81.0%) and easy to use (96%). Most enjoyed using the computer (87%), and the majority (87.0%) encountered few difficulties with connectivity. Of the 2496 intervention sessions, 14 (0.56%) were missed due to technical difficulties. Technical difficulties requiring modification to the intervention, such as an unstable internet connection, were reported on 79 occasions (3.0%). Themes from the interviews were: participants built rapport with the research assistants; felt better participating; had fun; and technology helped overcome barriers to participation. Conclusions: Using technology to deliver dementia prevention interventions remotely was well received by participants Participation occurred safely from the comfort of their own home with few technical difficulties.

Introduction:

Recording dementia diagnoses is essential to ensure appropriate post-diagnostic support and care. We examined the prevalence of recorded dementia in different routine datasets and associations with emergency hospitalisation and mortality.

Methods:

This retrospective longitudinal cohort study included all adults ≥65 years registered with a Southeast Scotland GP on 1st April 2016. Dementia diagnoses were identified in primary care, hospital discharge and community prescribing records. New diagnoses were considered from 1st April 2016 to 1st April 2020. All individuals were followed up to 23rd October 2023. Cox proportional hazards and Fine-Gray models were used to estimate associations between recorded dementia and death and emergency hospitalisation, respectively. Diagnosis capture in other datasets was examined, accounting for mortality.

Results:

On 1st April 2016, 7544/133407 (5.7%) individuals had a recorded dementia diagnosis: 1254 (16.6%) in a single dataset, including 940 (12.5%) only in primary care and 279 (3.7%) in hospital data. Between 1st April 2016 to 1st April 2020, 7359/133,407 (5.8%) had a new diagnosis: 5165 (70.2%) first recorded in primary care, 1634 (22.2%)in hospital and 560 (7.6%)in community prescribing data. People with dementia had higher risks of death [adjusted hazard ratio (HR) 2.46 (95% Confidence Interval (CI) 2.39-2.54)] and emergency hospitalisation [adjusted subdistribution HR 1.58 (95%CI 1.56-1.60)] then those without dementia. People with diagnoses first recorded in hospital had higher mortality rates than those with community diagnoses [<30days: aHR 8.96 (95%CI 6.94-13.52); >365days: aHR 1.29 (95%CI 1.19-1.41)]. Only 562 (35.9%) of those with hospital diagnoses had recorded primary care diagnoses within a year.

Conclusions:

Dementia is often recorded in single datasets, sometimes only in hospital data. Dementia is associated with adverse prognosis, with highest mortality in those first diagnosed in hospital. Findings highlight the need for better recording, dataset integration and scrutiny of hospital-based diagnostic pathways to ensure appropriate post-diagnostic support and care.

Introduction: Research suggests that physical and cognitive exercise can have a positive effective on those with dementia, but less is known about such interventions in those at risk for dementia. Understanding the feasibility of administering clinical assessments remotely using Zoom for Healthcare^TM in the context of a dementia prevention trial for at risk older adults is not well understood.

Methods: SYNERGIC@Home/SYNERGIE~Chez soi (NCT04997681) is a home-based, remotely delivered clinical trial targeting older adults at risk for dementia. Participants underwent a screening/baseline assessment and were randomized to one of four physical and cognitive exercise intervention arms for 16 weeks (3 times per week). They were reassessed immediately post-intervention and 6-months later. The standardized assessments of cognition, physical activity, mobility, mental health, nutrition, sleep, and quality of life were done at all three points. A research coordinator completed the assessments on a one-on-one basis via Zoom for Healthcare^TM. The quality of life questionnaire was mailed to the participant.

Results: Forty-eight of 60 participants (80%) (mean age 68.7 ± 5.7 years, 81.3% female) completed the study. Most participants (75.0%) were cognitively intact with at least 2 dementia risk factors. No participants withdrew from the trial because of difficulty with the remote delivery of the assessments. There were no statistically significant changes in any of the assessments of cognition, physical activity, mobility, mental health, nutrition, sleep, or quality of life throughout the study.

Conclusion: This study demonstrates it is possible to administer standardized clinical assessments of cognition, physical activity, mobility, mental health, nutrition, sleep, and quality of life remotely in the context of a clinical trial. The study was not powered to detect meaningful differences in these assessments. Nevertheless, this confirms the feasibility of remotely administering clinical assessments to older adults at risk for dementia

Background: Informal caregivers play a critical role in providing continuous, unpaid care to individuals with dementia, helping to improve their quality of life and reduce the demand on formal care services. The caregiving relationship is a complex, dyadic process that can have profound effects on both the caregiver and the care recipient, underscoring the need to alleviate caregiver burden and support their well-being. Understanding the motivations behind why individuals take on caregiving roles is essential, as it can predict their experiences, perceptions, and the overall impact of caregiving on their lives. A systematic review by Greenwood and Smith identified key motivators for informal caregivers. Additionally, there is substantial evidence that cultural perspectives and social values significantly influence caregiver experiences and motivations.

Methods: This systematic review aimed to update the findings of Greenwood and Smith by examining recent research on the motivations behind caregiving across different demographics, ethnicities, and cultures. Six electronic databases were searched from August 2018 to January 2024. Titles and abstracts were screened using machine learning methods (ASReview), and a subset of full texts underwent duplicate screening. Eligible studies were appraised using the Mixed Methods Appraisal Tool (MMAT), and data were extracted and organized into thematic categories.

Results: The initial search yielded 1,843 articles, of which 37 studies met the inclusion criteria after deduplication and screening. Cultural explanations for caregiving motivations included themes such as familism, ethnic identity, cultural values and beliefs, a sense of obligation, and personal fulfillment.

Discussion: Cultural perceptions and social values play a significant role in shaping caregivers' experiences and perceptions, which in turn influence families’ engagement with and acceptance of formal care and support services. These findings highlight the need for further research to guide the development of culturally sensitive psychosocial support interventions tailored for diverse caregiving populations. Such personalized approaches are essential for reducing caregiver burden and fostering an inclusive caregiving environment that respects the unique motivations and values of caregivers from various cultural backgrounds.

Introduction

As the prevalence of dementia continues to increase across the UK, understanding the lived experience of patients and carers affected by dementia becomes paramount. There is an established dementia pathway in Sussex for people living with dementia (PLWD) and their carers. To improve care and inform future commissioning priorities, the Brighton and Hove Health Watch (BHHW- a community interest company) surveyed the opinions of a group of PLWD and their carers around initial diagnosis and subsequent support.

Methods

PLWD and their carers receiving social support and willing to provide feedback were included in this survey. Using a topic guide, BHHW volunteers conducted a telephone interview with this group exploring their experience with their general practitioner (GP), and the memory assessment service (MAS) in relation to diagnosis, and post-diagnosis support. Transcribed interviews were analysed using qualitative thematic analysis (inductively and deductively) using Braun and Clarke’s method.

Results

Forty-five participants were interviewed, 37 carers and 6 PLWD (average age 78.2 range 64-95 years) between December 2022 and May 2023. Thirty-nine participants (86%) were of white-British ethnicity. Participants reported a range of different experiences with no consistent pattern by age, gender or location. Participants were generally satisfied with the initial GP care they received. The waiting time to access MAS was six weeks on average, an acceptable timeframe for the group. Some participants reported waiting as long as two years since the initial GP consultation before a dementia diagnosis was eventually made. Participants were generally satisfied by the thorough MAS review. Most participants felt that the information material they immediately received after dementia diagnosis was complex and overwhelming. Social support offered post-diagnosis was commendable.

Conclusion

The lived experience of PLWD and their carers in Sussex was generally positive. However, a tailored approach to post-diagnosis information provision is required.

Background

Dementia is a prevalent condition in an ageing population. Persons with dementia and their caregivers are often uncertain about what to expect after an initial diagnosis. Previous studies conducted on the experiences of informal caregivers show a clear demand to address these: providing adequate information, psychosocial support and access to services.

Introduction

The diagnosis of dementia is usually made by specialists in the tertiary hospital. However, resources in acute tertiary hospitals are expensive and valuable. To better allocate resources and improve the manpower situation, we have collaborated with our community partner to provide post diagnosis support (PDS) to patients newly diagnosed with dementia.

Methods

A PDS team consisting of an allied health professional and a caregiver peer is established by our community partner. They conduct home visits to provide psychoeducation to help persons with dementia and their caregivers understand more about dementia, develop personalised care plans, and coordinate support services to provide psychoemotional support.

Close communication is maintained between the PDS team and the acute hospital referral team. Multidisciplinary team meetings involving the geriatricians, nurses, case managers and community partners are also held quarterly to provide regular updates about the progress of the patients and facilitate learning.

Results

A total of 95 persons who were newly diagnosed with dementia in the previous 1.5 years were referred. 53 patients were eventually enrolled under the PDS programme, and received psychoeducation and personalised care plans. 72% were given caregiver support and 66% were linked up to community services. The average duration between date of referral to date of first home visit is 13 days.

Conclusions

In an ageing population where there is high healthcare utilisation, it is efficient to utilise existing services instead of duplicating them. By collaborating with community partners, we are empowering them to play a better role in supporting persons with dementia.