Dementia

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.

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.

Introduction
The Assessment and Rehabilitation Centre (ARC) in Edinburgh sees around 600 new patients a year who are beginning to demonstrate signs of frailty, principally around mobility and balance. When taking a comprehensive geriatric assessment, we commonly identify concerns around cognition. We noted in some cases people were already waiting to be seen by the Memory Clinic Services, the current wait for which is approximately 10 months. We decided to see what ARC could do to help.
Method
From within existing resources, alongside the Psychiatry of Older Age (POA) Team, the ARC multi-disciplinary team coproduced a pathway that involved an initial assessment comprising identification of potentially cognitively frail patients, taking a corroborative history, performing cognitive and imaging investigations. Each step was added to a shared spreadsheet enabling us to chart progress of diagnostic information steps.
Then once assessment complete, a POA colleague reviewed the evidence and made a diagnosis with treatment recommendations.  The ARC team then discusses the outcome with the patient and their family, arranges a medication tolerance follow-up in ARC, then refers onward for ongoing community support.
Results
Between March 2023 and 2024, 52 patients completed the Memory MDT process, 34 (65%) of which were diagnosed with a dementia, 20 (33%) of which were started on dementia medication. 16 were removed from the Memory service waiting list (2.5%) and a further 18 avoided the need to be referred.
Conclusion
We identified a group of patients with a common underlying pathology that had resulted in them being referred to multiple specialities.  By arranging our services around this vulnerable patient group rather than the other way around, we reduced their need for multiple hospital attendances and freed up resource in the memory service. Work is underway to spread and scale up.

Background
Cognitive impairment (CCL) and dementia are conditions typically occurring throughout the aging process, becoming major concerns in elderly healthcare. Advanced age, genetic factors, lifestyle habits, and comorbidities are risk factors that may increase the risk for both conditions. Thus, the aim of this study is to assess sociodemographic characteristics and comorbidities associated with CCL and dementia in older adults.
Methods
Cross-sectional analysis of the second wave (2019-2021) of the Brazilian Longitudinal Study of Aging (ELSI-Brazil). To assess the definition of CCL and dementia, the z-score of global cognitive function was calculated, evaluated through measurements of temporal orientation, verbal fluency, episodic, retrospective, and semantic memory domains. In addition, the IQCODE instrument and Activities of Daily Living were used to evaluate dementia. The Chi-Square test was used for the association of variables. The study was approved by the ethics committee.
Results
A total of 2951 participants were included, of whom 158 (5.4%) had CCL and 204 (6.9%) had dementia. Prevalence analyses of CCL revealed higher rates among individuals aged 65 to 74 years (6.18%), females (6.71%), divorced individuals (10.65%), rural residents (8.39%), hypertensive individuals (5.95%), non-diabetics (5.70%), and noncardiac individuals (5.60%). Meanwhile, for dementia, prevalence was higher in individuals aged 75 or older (26.76%), females (8.50%), widowers (18.06%), rural residents (9.75%), hypertensive individuals (8.57%), diabetics (9.01%), and cardiac individuals (13.51%).
Discussion
It was observed that long-lived elderly individuals have higher rates of dementia compared to CCL, as dementia symptoms increase with advancing age. Females and rural residents are in more  vulnerable positions in society, explaining the high prevalence of both diseases. Comorbidities are significant risk factors for dementia development, with cardiovascular diseases, in particular, playing a prominent role in vascular dementia. This broad view highlights the importance of specific management and prevention approaches to preserve cognitive functions during the aging process.

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

In 2021, the Welsh Government launched the “All Wales Dementia Care Pathway of Standards”, which the Cardiff and Vale University Health Board (CVUHB) Memory Assessment Service (MAS) works under (1. Welsh Government, 2021). This service evaluation aims to evaluate the CVUHB MAS diagnostic pathway against these standards.

Method

This retrospective review analysed 299 referrals to the CVUHB MAS from August 2020-2023. Data was collected via referral and clinic letters, focusing on demographics, referral sources, diagnostic timelines and clinical outcomes.

Results

Patients had a mean age of 78.2 years (n=299), with 86.0% (n=257/299) referred by General Practitioners. The average Charlson Comorbidity Index (CCI) was 4.93 (n=299) and the median Clinical Frailty Scale (CFS) score was 4 (n=299). Patients were on an average of 6.5 (n=299) medications at referral, with an anticholinergic burden (ACB) score of 1.12 (n=293) and 15.0% (n=44/293) had a high ACB (≥3). The average time from referral to diagnosis was 19.3 weeks, primarily due to pending neuroimaging. Ethnic minorities experienced longer symptom onset to diagnosis, 2.56 (n=16) vs 1.94 (n=263) years average. 59.2% (n=177/299) of patients received a diagnosis of dementia and 36.5% (n=109/299) of cognitive impairment. Medication was initiated in 30.8% (n=92/299). 84.1% (n=244/290) required one clinical appointment to receive a diagnosis.

Conclusions

Results showed the average CCI score was 4.93, indicating significant health burdens. The need for targeted medication reviews in Memory Clinic was highlighted in 15.0% of patients with an ACB ≥3. Addressing ethnic disparities is crucial to the overall reduction of diagnosis times. The CVUHB MAS achieved a high diagnostic rate at first clinical contact (84.1%). 30.4% (n=91/299) received a diagnosis of mild cognitive impairment, a critical cohort for early intervention to manage disease progression. Streamlining the pre-diagnostic pathway, especially performing neuroimaging at referral, is essential to meet the 12-week diagnosis target (1).