Dementia

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: There are limited evidence-based studies examining barriers and facilitators to pain assessment and management in residents with advanced dementia in long-term care settings, with no studies conducted to date in the long-term care setting in Northern Ireland. 

Aims: We aimed to explore care home nurses’ perspectives of facilitators of and barriers to providing optimum pain assessment and management to people with advanced dementia living in the nursing home setting in Northern Ireland. 

Methods: One-to-one semi-structured interviews were conducted with nursing home nurses. Nurses who actively provided care to residents living with dementia, nursing home managers, regional managers, trainers who were registered nurses with the Nursing and Midwifery Council and who supported the provision of dementia care in a nursing home setting, and nursing home nurses who had completed their induction or preceptorship training were eligible to participate. Participants were recruited through the Queen’s University Belfast Care Home Research Community of Practice. An interview guide was developed and piloted with three nurses who met the eligibility criteria. Interviews were conducted using Microsoft Teams, audio-recorded, transcribed verbatim, and analysed using reflexive thematic analysis. Ethical approval was obtained from the Faculty of Medicine, Health and Life Sciences Research Ethics Committee, Queens University Belfast. 

Results: Interviews were conducted with 10 nurses between November 2023 and June 2024. Reflexive thematic analysis generated six themes: (1) the crucial role of the nurse, (2) recognising and assessing pain, (3) pharmacological and non-pharmacological approaches, (4) communication with families and healthcare professionals, (5) training and resources, and (6) barriers and challenges in pain assessment and management. 

Discussion/Conclusion: Nursing homes should implement standardised policies and protocols, enhance nurse education on pain assessment tools and management strategies, and promote interdisciplinary collaboration to enhance recognition and management of pain and ultimately improve the quality of life for residents with advanced dementia.

Introduction

With the emergence of disease modifying treatments for Alzheimer’s disease (AD), there is an increasing emphasis on the earlier detection and diagnosis of AD. Cerebrospinal fluid (CSF) sampled using lumbar puncture (LP) can be used to establish a biological diagnosis of AD. One potential obstacle to the widespread adoption of CSF biomarkers for AD diagnosis has been a perceived association with poor patient tolerability and safety of LP. LPs have been undertaken within our Geriatrician-Led Memory Service since May 2022. Patients are provided with a written information sheet prior to LP.

Method

A survey was developed in-house by the clinical team. A service evaluation initiative was registered within the local trust. All patients attending for LP since May 2022 were posted a feedback form with an enclosed pen and stamped addressed return envelope on 5th August 2024. Questions included: what the patient’s understanding was of why they were having a LP, whether the written information sheet provided sufficient information, their overall experience of the LP and whether there were any concerns about the procedure.

Results

Of the 36 feedback forms posted, 17 (47%) were returned. Of the 17 responses received, 12/17 (71%) patients strongly agreed and 4 (24%) patients agreed that they understood why they were having a LP, what a LP involved before attending and that the leaflet provided sufficient information about a LP procedure. All 17 patients agreed that they were satisfied with their overall experience of the LP procedure. 5/17 (29%) patients stated they had concerns during or after the procedure; these included length of time taken for results to become available.

Conclusion

This survey of patients attending a Geriatrician-Led Memory Service for LP found obtaining CSF biomarkers for AD to be a well-tolerated procedure with high overall patient satisfaction.  

Introduction: The Free-Cog is a brief cognitive test designed to capture decline in both general cognition and executive function. The Free-Cog has been validated by comparison with the Mini-Addenbrooke Cognitive Examination in a UK secondary care setting. Here, we compare Free-Cog to the routinely-used Mini-Mental State Examination (MMSE) and the Lawton-Brody Instrumental Activities of Daily Living (IADL) and Physical Self-Maintenance Scales (PSMS). 

Methods: Patients from three memory clinics were recruited (n=318 records). The Free-Cog, MMSE, IADL and PSMS were administered in-person (n=288), via telephone (n=17), or virtually using video conferencing (n=12). The four tests were compared using Pearson correlation and ability to discriminate based on dementia diagnosis using binary logistic regression and area under receiver operator characteristic (AUROC) curves. 

Preliminary results: In-person Free-Cog score correlations ranged from strong (MMSE; r=0.86, 95% Confidence Interval [CI]: [0.83-0.89], p<0.001), to moderate (IADL; r= 0.57, 95% CI: [0.48-0.65], p<0.001) to weak with the PSMS (r=0.28, 95% CI: [0.16-0.39], p<0.001). The Telephone Free-Cog only correlated significantly with MMSE (r=0.73, 95% CI: [0.39-0.90], p<0.001) and virtual Free-Cog with MMSE (r=0.92, 95% CI: [0.74-0.98], p<0.001) and IADL (r= 0.63, 95% CI: [0.09-0.88], p=0.03). Each 1-point increase in Free-Cog (Odds ratio [OR]: 0.75, 95% CI: [0.69-0.82], p<0.001) decreased the odds of being diagnosed with dementia, as the MMSE (OR: 0.66, 95%CI: [0.57-0.76], p<0.001), and IADL (OR: 0.70, 95% CI: [0.60-0.83], p<0.001). The MMSE (AUROC=0.82) followed by the IADL (AUROC=0.80), then Free-Cog (AUROC=0.79) best discriminated between dementia and diagnosed otherwise, whereas the PSMS was inadequate (AUROC=0.60). 

Conclusion: The Free-Cog appears to be a free-of-cost, valid alternative to the routinely-used MMSE, and supplements the IADL scale in capturing cognitive and functional changes associated with neurodegenerative diseases of cognition.

Introduction

People living with dementia (PLWD) take five more medications on average than those without dementia. This can increase the risk of medication-related harm, defined as any negative outcome, harm or injury caused by taking a medication. The aim of this systematic review was to identify studies that reported the prevalence of medication-related harm in PLWD and to assess its impact by evaluating various outcomes.

Methods

Twelve databases were searched from date of inception to April 2023. Papers published in English, reporting on the prevalence and/or adverse outcomes of medication-related harm in PLWD using any study design were eligible for inclusion. Methodological quality was assessed using the Cochrane Risk Of Bias 2 tool for randomised controlled trials (RCTs) or the Risk Of Bias In Non-randomised Studies of Exposures for non-randomised studies. A meta-analysis was conducted to determine combined hazard ratios (HRs) and 95% confidence intervals (CIs) on studies with similar harm-related outcomes using Review Manager software.

Results

Ninety-seven studies were included in the review; 93 were non-randomised studies and four were RCTs. Quality assessments found all four RCTs and the majority of non-randomised studies (n=58) to be at a low risk of bias. Adverse health outcomes, including hospitalisations and mortality, were most frequently reported (n=45 studies), with psychoactive medications (such as antipsychotic medications) being the most implicated class of medicines (n=54 studies). Analysis showed that the use of antipsychotics was associated with a significantly increased mortality risk in six studies (n=25,715 participants; HR=1.42; 95% CI 1.10-1.84; p=0.008).

Conclusion

This systematic review is the first to report the impact of medication-related harm among PLWD, with evidence to suggest that antipsychotic medication use is associated with mortality. However, the included studies had high heterogeneity, which made it difficult to draw comparisons between studies.

Introduction:

Post-diagnostic support is key to ensuring the well-being of people with dementia and unpaid carers. The COVID-19 pandemic has caused a shift from in-person to remote service delivery, often with the use of information communication technologies (ICT) formats. This systematic review examined how ICT has been used to access remote post-diagnostic support services that address the needs people with dementia, or those of dyad, and explored care recipients’ views on accessing dementia-related support remotely.

Method:

Concepts relating to dementia and ICT were searched across six databases (PsychInfo, PubMed, Cochrane Library, CINAHL, Social Care Online, and Web of Science) in March 2021 and updated in March 2022. Studies published from 1990 and written in English, German or French were considered for inclusion. Methodological quality was appraised using the Hawker quality assessment tool and reporting structured according to PRISMA guidelines.

Results:

The search yielded 8,485 citations. Following the removal of duplicates and two screening processes, 18 studies were included. Studies described a range of post-diagnostic support, including exercise classes and therapeutic sessions, which were largely delivered remotely on a one-to-one basis. Videoconferencing software was the most employed ICT format, and people with dementia were directly engaging with ICT to access post-diagnostic support in 13 studies. Whilst studies demonstrated the feasibility of accessing post-diagnostic service remotely, overall, care recipients’ views were mixed.

Conclusions:

Following the increased reliance on ICT during the pandemic, it is likely that service delivery will continue with a hybrid approach. Accessing post-diagnostic support remotely is likely to benefit some care recipients. However, to prevent widening inequalities in access, service provision is required to accommodate to people with dementia and unpaid carers who are digitally excluded. Future research should capture the support provided by unpaid carers facilitating the engagement of the person with dementia when accessing remote post-diagnostic support.

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: Functional decline and restricted mobility are common issues among nursing home residents with dementia, resulting in frequent use of physiotherapy services. While these residents can typically articulate their therapy needs and preferences, these have not been investigated properly regarding physiotherapy and exercise, which may compromise therapy adherence. This study aims to explore the needs and preferences of nursing home residents with mild to moderate dementia in relation to physiotherapy and exercise interventions.

Methods: Semi-structured individual interviews were conducted with 15 nursing home residents diagnosed with mild to moderate dementia, who could understand and speak Dutch and were capable of providing informed consent. Thematic analysis was used to analyze interview data.

Results: A total of 82 unique codes were identified from the interviews, leading to four major themes: preferences regarding physiotherapy sessions; defining physiotherapy and exercise; exercise without physiotherapist supervision; communication. Generally, residents preferred physiotherapy that included exercise and advice aimed at maintaining independent physical functioning. Participants perceived physiotherapy as more intense compared to gymnastics classes, and it was not seen as applicable to all individuals. If safety and quality were ensured, exercises could be performed without physiotherapist supervision. While residents wanted their family caregivers to stay informed about their therapy, they mostly preferred to exercise with someone else.

Conclusions: Residents in our study expressed preferences regarding physiotherapy sessions, communication, and family caregiver involvement, which when implemented may enhance therapy adherence and effectiveness. Furthermore, a shift toward a more supervisory role for the physiotherapist, rather than the conventional "hands-on" approach, emerged as a possibility.

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.

Subjective cognitive decline (SCD) is defined by cognitive complaints expressed by the individual, without evidence of cognitive impairment on objective neuropsychological tests. Studies have analyzed SCD among patients with specific groups of diseases. An increased understanding of the association between disease patterns and subjective cognitive decline is essential to develop targeted interventions for these groups. Using data from the baseline of the Brazilian Longitudinal Study of Aging (ELSI-Brazil), this cross-sectional study included 2,508 participants. Subjective Cognitive Decline (SCD) was assessed using the Subjective Cognitive Decline Initiative Working Group's criteria. Multimorbidity (MM) was defined as the presence of two or more of 14 self-reported health conditions. Clusters of MM were identified based on the most prevalent dyads and triads of diseases within the sample. Robust Poisson regression models were used to estimate adjusted prevalence ratios (PR) for the association between MM clusters and SCD, accounting for potential confounders. The following dyads of chronic conditions were associated with higher prevalence of SCD: ophthalmological problems/osteoporosis (RR: 1.497 p=0.042), heart problems/stroke (RR: 2.33, p<.001), and hypertension />asthma (RR: 3.309, p=0.013). No triads had positive association with SCD, although the triads of ophthalmological problem/hypertension/osteoporosis (RR: 0.367, p<.001) and hypertension />cardiac problems/dyslipidemia (RR: 0.545, p=0.012) were negatively associated with the prevalence of SCD. Our study demonstrated an association between SCD and MM clusters, which is important for developing and managing care for individuals with cognitive decline and/or those multimorbidity patterns. The results could also provide a foundation for future research exploring the causality between these variables.