Recent Submissions

  • Dementia with lewy bodies: Genomics, transcriptomics, and its future with data science

    Goddard, Thomas R.; Rajkumar, Anto P. (2024)
    Dementia with Lewy bodies (DLB) is a significant public health issue. It is the second most common neurodegenerative dementia and presents with severe neuropsychiatric symptoms. Genomic and transcriptomic analyses have provided some insight into disease pathology. Variants within SNCA, GBA, APOE, SNCB, and MAPT have been shown to be associated with DLB in repeated genomic studies. Transcriptomic analysis, conducted predominantly on candidate genes, has identified signatures of synuclein aggregation, protein degradation, amyloid deposition, neuroinflammation, mitochondrial dysfunction, and the upregulation of heat-shock proteins in DLB. Yet, the understanding of DLB molecular pathology is incomplete. This precipitates the current clinical position whereby there are no available disease-modifying treatments or blood-based diagnostic biomarkers. Data science methods have the potential to improve disease understanding, optimising therapeutic intervention and drug development, to reduce disease burden. Genomic prediction will facilitate the early identification of cases and the timely application of future disease-modifying treatments. Transcript-level analyses across the entire transcriptome and machine learning analysis of multi-omic data will uncover novel signatures that may provide clues to DLB pathology and improve drug development. This review will discuss the current genomic and transcriptomic understanding of DLB, highlight gaps in the literature, and describe data science methods that may advance the field.
  • Correlates of felt age in caregivers of people with dementia: Findings from the IDEAL study

    Sabatini, Serena (2023)
    OBJECTIVE: Family relationships influence how people appraise their own aging and how their appraisals impact their health. We analyzed felt age (FA) among family caregivers of people with dementia. METHODS AND MEASURES: We used a stratified sample of 1,020 spousal and 202 adult-child caregivers from the IDEAL study. We estimated cross-sectional associations and bidirectional influences between caregivers' FA and their health and wellbeing (depression, number of health conditions, stress, positive aspects of caregiving) over 2 years. RESULTS: Among spousal caregivers, 25% had a younger FA and 36% had an older FA. Among adult-child caregivers, 21.8% had a younger FA and 36.1% had an older FA. In spousal and adult-child caregivers an older FA was cross-sectionally associated with higher depression, number of health conditions, and stress, and fewer positive aspects of caregiving. In spousal caregivers, hours of care per day moderated the association between FA and depression, and FA was associated with stress 1 year later. CONCLUSION: Caregiving may impact FA and its relationship with health. We urge continued research on the connections between caregiving and FA, and how interventions might support caregivers' positive views on their own aging, which will translate views on aging scholarship to meaningfully improve caregivers' lives.
  • The development of a UK culturally adapted and modified version of the person attuned musical interactions manual: Protocol for a 2-phase mixed methods study

    Waters, Byrony; Orrell, Martin; McDermott, Orii (2023)
    BACKGROUND: Previous research has suggested that care home interactions need significant improvements, especially those between staff and residents with dementia. Reasons for the lack of interactions are staff time pressures and residents' language impairments. Although residents may experience reduced language abilities, they can continue to communicate through other forms, including nonverbal communication and music. Person Attuned Musical Interactions (PAMI) is a staff training tool that provides staff with music therapy skill-sharing to promote high-quality interactions between staff and residents using nonverbal communication and music. The tool was originally developed in Denmark. To ensure that the tool is appropriate for UK care homes, a team of researchers in the United Kingdom have modified and culturally adapted the tool. OBJECTIVE: This study aims to investigate the appropriateness of the adapted and modified manual for UK care homes and to explore the impact of PAMI on residents with dementia and care staff. METHODS: The project consists of 2 phases, a qualitative field-testing study and a mixed methods evaluation study, which have been developed following the Medical Research Council's guidelines for complex interventions. Care staff and residents with dementia will be recruited from care homes in Lincolnshire, where the care staff will be trained in the PAMI intervention before implementing the intervention in their daily routines. Fortnightly reflective sessions will be provided throughout the phases to provide supervision and monitoring. The qualitative methods include interviews, reflective session transcripts, diary entries, and resident experience questionnaires. The quantitative outcome measures are residents' music engagement, staff's dementia competence, residents' quality of life, and staff burden. The resident's music engagement will be administered at 9 fortnightly time points. Staff's dementia competence, resident's quality of life, and staff burden will be administered at preintervention and postintervention time points. RESULTS: The study has been funded by The Music Therapy Charity as part of a PhD studentship. The study began recruiting in September 2021. The research team aims to publish the results of the first phase in July to September 2023 and those of the second phase in October to December 2023. CONCLUSIONS: This study will be the first to investigate the modified version of PAMI. Therefore, it will provide feedback on the appropriateness of the manual for UK care homes. The PAMI intervention has the potential to offer high-quality music intervention training to a larger population of care homes who may currently be restricted by finances, the availability of time, and a lack of training opportunities. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43408.
  • Optimising online peer support for people with young onset dementia

    Gerritzen, Esther V.; Orrell, Martin; McDermott, Orii (2024)
    People with Young Onset Dementia (YOD) can be hesitant to engage with online peer support. This work aims to explore (1) why people are hesitant to engage in online peer support, (2) how to get more people involved in online peer support, and (3) what makes online peer support work well. Nine interviews with people with YOD were conducted on MS Teams. Participants were recruited through purposive sampling. Data were analysed thematically. Reasons for being hesitant to engage with online peer support include being unsure what to expect and concerns about seeing others in more advanced stages of dementia. Additionally, it can be difficult to identify groups that suit one's needs and interests. Group facilitators of online peer support groups should provide a detailed description of their group so that people can better assess whether the group would suit them. The insights obtained from this study will be used to develop a Best Practice Guidance on online peer support for people with YOD. Moreover, the findings can be useful for further research exploring how to support people with dementia in general in accessing online health and social care services.
  • Comorbid health conditions and their impact on social isolation, loneliness, quality of life, and well-being in people with dementia: Longitudinal findings from the IDEAL programme

    Sabatini, Serena; Pentecost, Claire (2024)
    BACKGROUND: Most people with dementia have multiple health conditions. This study explores (1) number and type of health condition(s) in people with dementia overall and in relation to age, sex, dementia type, and cognition; (2) change in number of health conditions over two years; and (3) whether over time the number of health conditions at baseline is related to social isolation, loneliness, quality of life, and/or well-being. METHODS: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised people with dementia (n = 1490) living in the community (at baseline) in Great Britain. Health conditions using the Charlson Comorbidity Index, cognition, social isolation, loneliness, quality of life, and well-being were assessed over two years. Mixed effects modelling was used. RESULTS: On average participants had 1.8 health conditions at baseline, excluding dementia; increasing to 2.5 conditions over two years. Those with vascular dementia or mixed (Alzheimer's and vascular) dementia had more health conditions than those with Alzheimer's disease. People aged ≥ 80 had more health conditions than those aged < 65 years. At baseline having more health conditions was associated with increased loneliness, poorer quality of life, and poorer well-being, but was either minimally or not associated with cognition, sex, and social isolation. Number of health conditions had either minimal or no influence on these variables over time. CONCLUSIONS: People with dementia in IDEAL generally had multiple health conditions and those with more health conditions were lonelier, had poorer quality of life, and poorer well-being.
  • Mid- and later-life risk factors for predicting neuropathological brain changes associated with alzheimer's and vascular dementia: The Honolulu Asia aging study and the age, gene/environment susceptibility-reykjavik study

    Stephan, Blossom C. M. (2022)
    Abstract Introduction Dementia prediction models are necessary to inform the development of dementia risk reduction strategies. Here, we examine the utility of neuropathological-based risk scores to predict clinical dementia. Methods Models were developed for predicting Alzheimer's disease (AD) and non-AD neuropathologies using the Honolulu Asia Aging neuropathological sub-study (HAAS; n = 852). Model accuracy for predicting clinical dementia, over 30 years, was tested in the non-autopsied HAAS sample (n = 2960) and the Age, Gene/Environment Susceptibility-Reykjavik Study (n = 4614). Results Different models were identified for predicting neurodegenerative and vascular neuropathology (c-statistic range: 0.62 to 0.72). These typically included age, APOE, and a blood pressure-related measure. The neurofibrillary tangle and micro-vascular lesion models showed good accuracy for predicting clinical vascular dementia. Discussion There may be shared risk factors across dementia-related lesions, suggesting common pathways. Strategies targeting these models may reduce risk or postpone clinical symptoms of dementia as well as reduce neuropathological burden associated with AD and vascular lesions.
  • Prevalence of dementia among older age people and variation across different sociodemographic characteristics: A cross-sectional study in Bangladesh

    Stephan, Blossom C. M. (2023)
    BACKGROUND: Dementia is a significant global health issue, particularly for low-income and middle-income countries which majorly contribute to the dementia cases reported globally (67%). We estimated the prevalence of dementia among older people in Bangladesh and compared the estimate across different sociodemographic characteristics and divisions. METHODS: A cross-sectional study was conducted in 2019 among individuals aged 60 years or older in seven administrative divisions in Bangladesh. Equal numbers of male and female participants were recruited from each division through a multi-stage random sampling technique. Recruitment was proportionally distributed in urban and rural areas in each division. Following consent, the Mini Mental State Examination (MMSE) was performed on all participants. Dementia was defined as an MMSE score of <24 out of 30. Data on age, sex, education, marital status, occupation, socioeconomic status, and type of community (urban or rural) were obtained using a structured questionnaire to compare the prevalence of dementia across different sociodemographic characteristics. FINDINGS: Between January and December 2019, 2795 individuals were recruited including ∼400 from each of the seven administrative divisions. The mean age was 67 years (SD: 7), 68% were from rural areas and 51% were female. The prevalence of dementia was 8.0% (95% CI: 7.0-8.9%) with variations across age, sex, education, marital status, occupation, and division. No variations in prevalence were observed across urban/rural locations or socioeconomic status. After adjusting for age, sex, education, occupation and marital status, the odds of dementia was two times higher in females than males (OR: 2.15, 95% CI: 1.43-3.28); nine times higher in people aged ≥90 years than people aged 60-69 years (OR: 9.62, 95% CI: 4.79-19.13), and three times higher in people with no education compared to those who had completed primary school (OR: 3.10, 95% CI: 1.95-5.17). INTERPRETATIONS: The prevalence of dementia is high in Bangladesh and varies across sociodemographic characteristics with a higher prevalence among females, older people, and people with no education. There is an urgent need to identify the key risk factors for dementia in developing countries, such as Bangladesh, to inform the development of context-relevant risk reduction and prevention strategies. FUNDING: None.
  • Cognitive trajectories: exploring the predictive role of subjective cognitive decline and awareness of age-related changes for cognitive functioning

    Sabatini, Serena; Stephan, Blossom C. M. (2023)
    BACKGROUND: We investigated whether aspects of subjective cognitive aging, including awareness of age-related gains and losses in cognition (AARC-gains, AARC-losses) and subjective cognitive decline (SCD), predict change in objective cognitive function as measured by verbal reasoning (VR) and working memory (WM). METHODS: We used longitudinal data for 3,299 cognitively healthy UK residents aged 65+. We used data on AARC and SCD assessed in 2019, and cognitive tasks assessed in 2019, 2020, and 2021. We used latent growth curve modeling, latent class growth analysis, and growth mixture modeling. RESULTS: For VR, multiple growth trajectories were not evident. Mean VR at baseline was 37.45; this remained stable over time. Higher AARC-gains in cognition (mean intercept = -0.23; 95%CI: -0.31; -0.16), higher AARC-losses in cognition (mean intercept = -0.37; 95%CI: -0.46; -0.28), and lower SCD (mean intercept = 2.92; 95%CI: 2.58; 3.58) were associated with poorer VR at baseline. A three-class growth mixture model-class varying best represented trajectories of WM. In Class 1 (N = 182) mean WM at baseline was 31.20; this decreased by 2.48 points each year. In Class 2 (N = 119) mean WM at baseline was 23.12; this increased by 3.28 points each year. In Class 3 (N = 2,998) mean WM at baseline was 30.11; and it remained stable. Higher AARC-gains (Odds Ratio = 1.08; 95%CI: 1.03; 1.14) and AARC-losses (Odds Ratio = 1.10; 95%CI: 1.04; 1.16) in cognition predicted greater likelihood of being in Class 2 than Class 3. CONCLUSION: Although both higher AARC-gains and AARC-losses indicate poorer concurrent cognition, higher AARC-gains may be a resource that facilitates future cognitive improvement.
  • "The dynamic nature of being a person": An ethnographic study of people living with dementia in their communities

    Orrell, Martin (2023)
    BACKGROUND AND OBJECTIVES: A dementia diagnosis can affect social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities. RESEARCH DESIGN AND METHODS: Focused ethnography informed by Spradley's approach to data collection and analysis. Observations in community spaces. RESULTS: Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hr of observation, and researcher field notes. The overarching theme "the dynamic nature of being a person" encapsulates participants' exhibited experiences in negotiating to attain and sustain an acknowledged place in their communities. Two subthemes characterized contexts and actions: (1) "Being me-not dementia": Participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. (2) "Resisting or acquiescing to 'being absent in place'": Participants were often able to resist being absent to the gaze from others, but some social structures and behaviors led to a person being "in place," yet not having their presence confirmed. DISCUSSION AND IMPLICATIONS: People living with dementia can actively draw on personal attributes, familiar rituals, objects, and social roles to continue to present themselves as social beings. Identifying how postdiagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia enabling them to have a continued social presence.
  • Living well with dementia: Feeling empowered through interaction with their social environment

    Dening, Tom (2023)
    This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. A qualitative thematic content analysis was performed to elicit the key features of the experience reported by the interviewees. Three overarching categories were identified: the first category experiencing changes in personal life and coping with changes in life; covered losses and coping strategies; the second category retaining a sense of usefulness; included social participation and the need for activities with others; the third category feeling empowered; covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants placed a strong emphasis on continuity and on the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity.
  • A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias

    Gerritzen, Esther V. (2023)
    OBJECTIVES: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. DESIGN: Pre-post interventional mixed methods study. SETTING: Online videoconference group program for carers across the UK held in 2021. PARTICIPANTS: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. INTERVENTION: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. MEASUREMENTS: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. RESULTS: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. CONCLUSION: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.
  • "I felt like I had been put on the shelf and forgotten about" - lasting lessons about the impact of COVID-19 on people affected by rarer dementias

    Gerritzen, Esther V. (2023)
    BACKGROUND: The public health measures imposed in many countries to contain the spread of COVID-19 resulted in significant suspensions in the provision of support and care for people with dementia. The negative effects of these measures have been extensively reported. However, little is known about the specific impact on people with young onset, non-memory-led and inherited dementias. This group may have experienced different challenges compared to those with late onset dementia given their non-memory phenotypes and younger age. We explored the impact of the first COVID-19 lockdown on people living with familial Alzheimer's disease, behavioural variant frontotemporal dementia, familial frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy and primary progressive aphasia and their carers in the UK and their self-reported strategies for coping. METHODS: This was a mixed methods study. An online survey was administered to people with dementia and family carers recruited via Rare Dementia Support. Free-text responses were analysed using framework analysis to identify key issues and themes. RESULTS: 184 carers and 24 people with dementia completed the survey. Overall, people with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%), well-being (57%) and changes to medication (26%) during lockdown. Carers reported a reduction in the support they received (55%) which impacted their own mental health negatively. Qualitative analysis of free-text responses shed light on how the disruption to routines, changes to roles and responsibilities, and widespread disconnection from friends, family and health and social care support varied according to phenotype. These impacts were exacerbated by a more general sense that precious time was being lost, given the progressive nature of dementia. Despite significant challenges, respondents demonstrated resilience and resourcefulness in reporting unexpected positives and strategies for adapting to confinement. CONCLUSIONS: This study has highlighted the specific impacts of the COVID-19 restrictions on people with young onset, non-memory-led and inherited dementias, including behavioural variant frontotemporal dementia, primary progressive aphasia and posterior cortical atrophy, and their carers. The specific challenges faced according to diagnosis and the self-reported strategies speak to the importance of - and may inform the development of - tailored support for these underrepresented groups more generally.
  • Could routine vaccinations prevent dementia?

    Orrell, Martin (2023)
    Not available
  • Promoting activity, independence, and stability in early eementia and mild cognitive impairment (PrAISED): randomised controlled trial

    Bramley, Trevor; Junaid, Kehinde; das Nair, Roshan; Smith, Helen; Orrell, Martin (2023)
    Objective To determine the effectiveness of an exercise and functional activity therapy intervention in adults with early dementia or mild cognitive impairment compared with usual care.Design Randomised controlled trial.Setting Participants’ homes and communities at five sites in the United Kingdom.Participants 365 adults with early dementia or mild cognitive impairment who were living at home, and family members or carers.Intervention The intervention, Promoting activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED), was a specially designed, dementia specific, rehabilitation programme focusing on strength, balance, physical activity, and performance of activities of daily living, which was tailored and progressive and addressed risk and the psychological needs of people with dementia. Up to 50 therapy sessions were provided over 12 months. The control group received usual care plus a falls risk assessment. Procedures were adapted during the covid-19 pandemic.Main outcome measures The primary outcome was score on the carer (informant) reported disability assessment for dementia scale 12 months after randomisation. Secondary outcomes were self-reported activities of daily living, physical activity, quality of life, balance, functional mobility, fear of falling, frailty, cognition, mood, carer strain, service use at 12 months, and falls between months 4 and 15.Results 365 patient participants were randomised, 183 to intervention and 182 to control. The median age of participants was 80 years (range 65-95), median Montreal cognitive assessment score was 20 out of 30 (range 13-26), and 58% (n=210) were men. Intervention participants received a median of 31 therapy sessions (interquartile range 22-40) and reported completing a mean 121 minutes of PrAISED exercise each week. Primary outcome data were available for 149 intervention and 141 control participants. Scores on the disability assessment for dementia scale did not differ between groups: adjusted mean difference −1.3, 95% confidence interval −5.2 to 2.6; Cohen’s d effect size −0.06, 95% confidence interval −0.26 to 0.15; P=0.51). Upper 95% confidence intervals excluded small to moderate effects on any of the range of outcome measures. Between months 4 and 15 the intervention group experienced 79 falls and the control group 200 falls (adjusted incidence rate ratio 0.78, 95% confidence interval 0.5 to 1.3; P=0.3).Conclusion The intensive PrAISED programme of exercise and functional activity training did not improve activities of daily living, physical activity, or quality of life; reduce falls; or improve any other secondary health status outcomes, despite good uptake. Future research should consider alternative approaches to maintaining ability and wellbeing in people with dementia.Trial registration ISRCTN Registry ISRCTN15320670.Data sharing might be possible for additional analyses by contacting the corresponding author.
  • Artificial intelligence for biomarker discovery in alzheimer's disease and dementia

    Rajkumar, Anto P. (2023)
    With the increase in large multimodal cohorts and high-throughput technologies, the potential for discovering novel biomarkers is no longer limited by data set size. Artificial intelligence (AI) and machine learning approaches have been developed to detect novel biomarkers and interactions in complex data sets. We discuss exemplar uses and evaluate current applications and limitations of AI to discover novel biomarkers. Remaining challenges include a lack of diversity in the data sets available, the sheer complexity of investigating interactions, the invasiveness and cost of some biomarkers, and poor reporting in some studies. Overcoming these challenges will involve collecting data from underrepresented populations, developing more powerful AI approaches, validating the use of noninvasive biomarkers, and adhering to reporting guidelines. By harnessing rich multimodal data through AI approaches and international collaborative innovation, we are well positioned to identify clinically useful biomarkers that are accurate, generalizable, unbiased, and acceptable in clinical practice. HIGHLIGHTS: Artificial intelligence and machine learning approaches may accelerate dementia biomarker discovery. Remaining challenges include data set suitability due to size and bias in cohort selection. Multimodal data, diverse data sets, improved machine learning approaches, real-world validation, and interdisciplinary collaboration are required.
  • Development of the web-based PRIDE self management app

    Lee, Abigail R.; McDermott, Orii; Orrell, Martin (2023)
    Background: Self-management, autonomy and quality of life are key constructs in enabling people to live well with dementia. This population often become isolated following diagnosis, but it is important for them to feel encouraged to maintain their daily activities and stay socially active. PRIDE promotes social inclusion and greater dementia self-management via an interactive handbook. Objective(s): To outline the development of the paper-based PRIDE manual into a web-based platform. Method(s): There were two overarching stages to creating the web-based version of PRIDE. The first was Preliminary Development which encompassed; (1) tendering, (2) preliminary development work, (3) consultations, (4) beta version of the website, (5) user testing/consultation on beta version, and (6) production of final web-based prototype. The second stage was Development of the Final PRIDE-app, which included two sprints and further user-testing. Result(s): Through a lengthy development process, modifications were made to app areas such as the login process, content layout and aesthetical appearance. Feedback from the target population was incorporated throughout the process to achieve a dementia-friendly product. The finished PRIDE-app has defined areas for reading up on dementia-related topics, creating activity plans, and logging these completed activities. Through the work discussed, the PRIDE-app has evolved from its initial prototype into a more dementia-friendly and usable program that is of a standard for wider testing.
  • An introduction to the INDUCT programme

    Orrell, Martin; McDermott, Orii (Routledge, 2023)
    This book hopes to illustrate the diverse and important range of projects making a distinct and lasting contribution to improving dementia care. Initially we have a section on two very innovative aspects of the program including both a detailed description of our unique training program and perspectives on the wide range of public involvement activities written in collaboration with Alzheimer Europe. The main research section of the book is divided along the three main themes: (1) technology in everyday life; (2) technology to promote meaningful activities and (3) healthcare technology. To consolidate the best approaches to getting technology into practice, we also had three crosscutting themes which strongly influenced our best practice guidance: (1) determining practical, cognitive and social factors to improve usability of technology; (2) evaluating the effectiveness of specific contemporary technology; (3) tracing facilitators and barriers for implementation of technology in dementia care. Our program has also shown the importance of impact and public engagement work including participation in the conferences of INTERDEM and Alzheimer Europe. Early Stage Researchers (ESRs) have done a range of public engagement events such as presentations to groups of older and younger people to stimulate their interest in knowledge, research and care of people with dementia. Key findings and recommendations and resources from the program including the Best Practice Guidance are available on our website (www.dementiainduct.eu/guidance/). Better public understanding of the role of technology in dementia care should lead to reduced fear and stigma, and a more proactive approach to seeking help by people worried about their memory and their families. We are delighted to be able to bring so much together in this book and hope you find it interesting and useful to improve research, practice and care. (PsycInfo Database Record (c) 2023 APA, all rights reserved) (Source: chapter)
  • Thinkability: A new app for cognitive stimulation for people with dementia

    Schneider, Justine; Orrell, Martin (Routledge, 2023)
    Given that the prevalence of dementia is set to increase in the coming years, there will be an increased need for sustainable, affordable and scalable solutions to support people with dementia. Thinkability offers such a solution: the app is easy to access from home; it only requires a single download with a one-off payment, and it includes a wide range of activities, which can be updated in real time. Furthermore, the Thinkability app is well placed to reach underserved communities of people with dementia, for example those who live more rurally or those who are uncomfortable with attending groups; this may help to reduce inequalities in terms of care and support received. The development process, over the course of multiple stages and small-scale studies, has demonstrated that an agile approach towards technology development where all relevant stakeholders are involved can be effective in creating suitable technology for people with dementia and carers. However, within our studies, we found that agile development requires a quick turn-around meaning that when a prototype is developed, it should be evaluated by users as soon as possible. Given the practicalities of conducting research, which require sufficient time for study preparation, this is not always possible. Therefore, to add more value to development, it is recommended to involve one or two people with dementia as co-researchers throughout the development process in order to receive consistent feedback. Furthermore, the development process can be supported by using appropriate frameworks to better understand the process and determine the necessary research activities. These recommendations are useful in creating an intervention which is fit for purpose and has better potential to be successfully implemented into practice. In terms of the evaluation, feedback from people with dementia and carers indicated that Thinkability could be useful and had good usability. The majority of the participants found Thinkability to be enjoyable; however, for people who had milder dementia, the activities were found to be less challenging and therefore, less mentally stimulating. Adding more relevant content in the form of activities and levels, which are tailored to individual needs and interests, would help make Thinkability more engaging. This is also recommended for future touch-screen interventions for people with dementia to ensure an appropriate level of personalization. Preliminary results are in accordance with previous iCST research and show improvements in the QoL of carers in a small sample. Furthermore, Thinkability has been deemed to be an enjoyable app appropriate for mental stimulation and engagement. These findings contribute to the existing but limited body of research surrounding computerized cognitive stimulation and will therefore be relevant for multiple stakeholders looking to develop or participate in such interventions. However, large-scale studies investigating the formal effectiveness of such interventions are still lacking. Therefore, it is recommended to conduct a fully powered RCT to determine the cost-effectiveness of Thinkability. If individual benefits on cognition and quality of life can be established, these could lead to reduced excess disability, longer residence at home and perhaps even decrease admissions to care and/or nursing homes, thus affecting overall costs of care. (PsycInfo Database Record (c) 2023 APA, all rights reserved) (Source: chapter)
  • Extracellular vesicle microRNA-mediated transcriptional regulation may contribute to dementia with Lewy bodies molecular pathology

    Rajkumar, Anto P. (2023)
    OBJECTIVE: Dementia with Lewy bodies (DLB) is the second most common dementia. Advancing our limited understanding of its molecular pathogenesis is essential for identifying novel biomarkers and therapeutic targets for DLB. DLB is an α-synucleinopathy, and small extracellular vesicles (SEV) from people with DLB can transmit α-synuclein oligomerisation between cells. Post-mortem DLB brains and serum SEV from those with DLB share common miRNA signatures, and their functional implications are uncertain. Hence, we aimed to investigate potential targets of DLB-associated SEV miRNA and to analyse their functional implications. METHODS: We identified potential targets of six previously reported differentially expressed miRNA genes in serum SEV of people with DLB (MIR26A1, MIR320C2, MIR320D2, MIR548BA, MIR556, and MIR4722) using miRBase and miRDB databases. We analysed functional implications of these targets using EnrichR gene set enrichment analysis and analysed their protein interactions using Reactome pathway analysis. RESULTS: These SEV miRNA may regulate 4278 genes that were significantly enriched among the genes involved in neuronal development, cell-to-cell communication, vesicle-mediated transport, apoptosis, regulation of cell cycle, post-translational protein modifications, and autophagy lysosomal pathway, after Benjamini-Hochberg false discovery rate correction at 5%. The miRNA target genes and their protein interactions were significantly associated with several neuropsychiatric disorders and with multiple signal transduction, transcriptional regulation, and cytokine signalling pathways. CONCLUSION: Our findings provide in-silico evidence that potential targets of DLB-associated SEV miRNAs may contribute to Lewy pathology by transcriptional regulation. Experimental validation of these dysfunctional pathways is warranted and could lead to novel therapeutic avenues for DLB.

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