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Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face‐to‐face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non‐profit organisations. Results: Forty‐nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single‐point‐of‐contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross‐country learnings on how to address these inequalities in dementia, and can underpin further solution‐focused research that informs policy and key decision makers to implement changes. Key points: There are numerous similar barriers to accessing dementia care across different European countries.Some of the key challenges to equitable dementia care are lack of workforce knowledge, lack of information, stigma, financial barriers, and lack of communication among care professionals.Cultural challenges, postcode lottery, and service suitability were also raised as key barriers to dementia care. [ABSTRACT FROM AUTHOR]

Background: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts. Methods: The review was registered on PROSPERO [CRD42021292518]. Three electronic databases were searched and included studies reported on a DCN service, defined as a service in which non‐clinically trained workers provide personalised advice and support to people with dementia and/or carers in the community. Two independent reviewers screened abstracts and titles and read through full papers for inclusion. Risk of bias was assessed using the Standard Quality Assessment QualSyst. Results: We included 14 papers reporting on six studies. All services were US‐based and only varied by integration and training provided. Studies reported different degrees of impact on service utilisation and on symptoms and mental well‐being of people with dementia and their carers, with too little evidence to draw substantial/meaningful conclusions and studies employing different outcome measures. One study evidenced greater impacts on people with more advanced dementia compared to earlier stages. Conclusions: DCN services have the potential to effectively provide non‐clinical support to people with dementia and carers from the point of diagnosis. Further research from countries other than the USA, focusing on the impact on social care and social support service access and utilisation, and utilising similar established outcome measures are required. Key points: Evidence on the impact of Dementia Care Navigators (DCNs) is limited but shows promising benefits for people living with dementia and their carers.More research needs to be conducted in countries other than the US, where all evidence was reported, and with similar outcome measures to allow comparison.DCNs are a highly useful professional group without medical training, who can navigate people living with dementia and their carers to support and provide support themselves. [ABSTRACT FROM AUTHOR]

Objectives: Considering the adverse outcomes of COVID‐19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in‐person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries. Methods: The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi‐structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach. Results: Three overarching themes were developed: (1) Technology kept us alive during COVID‐19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden. Conclusions: Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well‐adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally. Key points: During COVID‐19 technology allowed people with dementia and informal carers to be socially engaged, have a routine, and stay active.Benefits of technology in dementia health and psychosocial care were limited.Barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments.The pandemic should prompt actions towards a more extensive and well‐adapted use of technology in dementia care. [ABSTRACT FROM AUTHOR]

Objectives: Limited research has shown that people with dementia (PwD) from lower socio‐economic backgrounds can face difficulties in accessing the right care at the right time. This study examined whether socio‐economic status (SES) and rural versus urban living location are associated with the time between diagnosis and care home admission in PwD living in Wales, UK. Methods/Design: This study linked routine health data and an e‐cohort of PwD who have been admitted into a care home between 2000 and 2018 living in Wales. Survival analysis explored the effects of SES, living location, living situation, and frailty on the time between diagnosis and care home admission. Results: In 34,514 PwD, the average time between diagnosis and care home admission was 1.5 (±1.4) years. Cox regression analysis showed that increased age, living alone, frailty, and living in less disadvantaged neighbourhoods were associated with faster rate to care home admission. Living in rural regions predicted a slower rate until care home admission. Conclusions: This is one of the first studies to show a link between socio‐economic factors on time to care home admission in dementia. Future research needs to address variations in care needs between PwD from different socio‐economic and geographical backgrounds. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this national survey was to explore the impact of COVID‐19 public health measures on access to social support services and the effects of closures of services on the mental well‐being of older people and those affected by dementia. Methods: A UK‐wide online and telephone survey was conducted with older adults, people with dementia, and carers between April and May 2020. The survey captured demographic and postcode data, social support service usage before and after COVID‐19 public health measures, current quality of life, depression, and anxiety. Multiple linear regression analysis was used to explore the relationship between social support service variations and anxiety and well‐being. Results: Five hundred and sixty‐nine participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults). Paired samples t‐tests and X2‐tests showed that the mean hour of weekly social support service usage and the number of people having accessed various services was significantly reduced post COVID‐19. Multiple regression analyses showed that higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well‐being in unpaid carers and older adults. Conclusions: Being unable to access social support services due to COVID contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this systematic review was to evaluate studies which employed routine and cohort data sets to understand inequalities in dementia care pathways. Methods: We identified 27 research papers using routine data sets to investigate inequalities in dementia care pathways through electronic and grey literature searches. Papers were independently assessed by two reviewers for inclusion based on defined criteria. Included papers were quality rated using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross‐Sectional Studies. Data was extracted based on stage(s) in dementia care pathway and socio‐economic factors investigated. Results: Inequalities were noted across dementia care pathways. Socio‐economic and protected characteristics were shown to impact the likelihood of people with dementia moving into institutional nursing care, the quality and consistency of their treatment, need for emergency and urgent healthcare, the rate of illness progression and their long‐term survival. Research was often disparate ignoring the multiple parts of the dementia care pathway, or the impact of specific factors across multiple stages. Conclusions: Our study highlights issues in dementia care pathways based on socio‐economic or protected characteristics. Equitable service provision, more culturally appropriate services, improved health literacy and increased provision for both early diagnosis and care at home can help narrow the gap in dementia care inequalities. There is greater need for research investigating dementia care pathways as something greater than the sum of its parts; exploring the influence of socio‐economic factors from a person's entrance into the system and throughout. [ABSTRACT FROM AUTHOR]

Background: Cultural differences in how the symptoms, causes, consequences, and treatments of dementia are understood and interpreted by South Asian people are a commonly expressed reason for late- or nonuse of mental health and care services. However, systematic collection of information on South Asian perceptions of dementia is hindered by a lack of appropriate instrumentation.Objectives: To produce a shortened version of the Barts Explanatory Model Inventory for Dementia (BEMI-D) schedule.Methods: A two stage item reduction approach was employed first using multidimensional scaling categorizing items as core, intermediate, or outlier. Then, item review was undertaken using three criteria: literature importance, clinical face validity, and sub-group prevalence. The analysis followed a nonmetric multidimensional scaling method based on a two-way proximity matrix.Results: The original BEMI-D had 197 items allocated to four checklists: symptoms, causes, consequences, and treatments. The two stage item reduction approach resulted in the removal of 75 items. These reductions were achieved across all four checklists in relatively equal proportions. There was no evidence of substantive content loss in the revised schedule. The reduced version of the schedule comprises 122 items.Conclusions: A condensed version of the BEMI-D is more efficient as an assessment schedule that captures the culturally diverse perceptions of memory problems for South Asians offering a balanced trade-off between feasibility of use and content validity. [ABSTRACT FROM AUTHOR]

Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD.Methods: Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis.Results: Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden.Conclusions: Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: The Mini-Mental State Examination (MMSE) is one of the most frequently used cognitive measures for dementia severity and linked to deficits in everyday functioning. Recently, the Montreal Cognitive Assessment (MoCA) and the Addenbrooke's Cognitive Examination III (ACE-III) increasingly substitute for the MMSE. However, there are no specific cutoffs in the ACE-III for mild dementia. The objectives of this exploratory study were to assess the sensitivity of each scale to everyday functioning and to examine the cutoffs between mild and moderate dementia on the ACE-III.Methods: People with mild dementia completed the MMSE, MoCA and ACE-III, whilst informal carers completed the Revised Interview for Deteriorations in Daily Living Activities for Dementia to rate their relative's initiative and performance of instrumental activities of daily living and the Katz activities of daily living scale. Data were analysed using correlation analysis, raw score comparisons, Cohen's kappa and receiver operating characteristics analysis.Results: Thirty-three dyads completed the measures. The ACE-III was the most sensitive tool for everyday functioning performance, whilst its language subscale was specifically related to initiation of activities. The most suitable cutoff on the ACE-III between mild and moderate dementia was 61.Conclusions: Findings suggest the ACE-III more efficiently identifies everyday functional impairments. Further research is required to confirm these exploratory analyses of the cutoff between mild and moderate dementia on the ACE-III. Both functional impairment and stage of dementia are needed in the diagnostic process and in the clinical assessment of people with dementia. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: The literature commonly evaluates those daily activities which are impaired in dementia. However, in the mild stages, people with dementia (PwD) are still able to initiate and perform many of those tasks. With a lack of research exploring variations between different dementia diagnoses, this study sought to investigate those daily activities with modest impairments in the mild stages and how these compare between Alzheimer's disease (AD), vascular dementia (VaD) and mixed dementia.Methods: Staff from memory assessment services from nine National Health Service trusts across England identified and approached informal carers of people with mild dementia. Carers completed the newly revised Interview for Deteriorations in Daily Living Activities in Dementia 2 assessing the PwD's initiative and performance of instrumental activities of daily living (IADLs). Data were analysed using analysis of variance and Chi-square tests to compare the maintenance of IADL functioning across AD, VaD, and mixed dementia.Results: A total of 160 carers returned the Interview for Deteriorations in Daily Living Activities in Dementia 2, of which 109, 21, and 30 cared for someone with AD, VaD, and mixed dementia, respectively. There were significant variations across subtypes, with AD showing better preserved initiative and performance than VaD for several IADLs. Overall, PwD showed greater preservation of performance than initiative, with tasks such as preparing a hot drink and dressing being best maintained.Conclusion: Findings can help classify dementia better into subtypes in order to receive bespoke support. It suggests that interventions should primarily address initiative to improve overall functioning. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: South Asian older adults access services for mental health problems and dementia less than other older people in the UK, unlike for physical health problems. This pilot study investigated how South Asians with self-defined memory problems, with and without GP consultation, construe the symptoms, causes, consequences and treatment of the condition.Methods: Participants were recruited through community centres, their networks and memory clinics in Greater Manchester. The newly developed Barts Explanatory Model Inventory for Dementia (BEMI-D) was administered to 33 (18 M, 15 F) older South Asians aged 65 or above with memory problems in English, Gujarati or Urdu. Furthermore, cognition, executive function and depression were assessed.Results: Perceptions of dementia varied by GP consultation for memory problems. A greater proportion of older adults without a consultation considered memory problems to be given by God, saw acceptance of fate as an alternative treatment and did not identify medical support as appropriate. Forgetfulness and loss of social meaning were identified as symptoms of dementia more by those with a consultation. Higher levels of diabetes, heart disease and depression were found in those without a consultation.Conclusions: Differences in perceptions may influence the decision about consulting a GP. Similarly, consultation for memory problems appears linked to extent physical health problems and mental health consultation (depression). These variations reported on a small scale in this pilot study suggest the need to explore the impact of perceptions on rates of GP consultation, so as to improve timely diagnosis and access to appropriate services. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.Methods: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support.Results: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult-child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden.Conclusion: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support. [ABSTRACT FROM AUTHOR]

Objective With increasing international migration, mental health care of migrants and ethnic minorities is a public health priority. South Asian older adults experience difficulties in accessing services for memory impairment, dementia and mental illness. This review examines barriers and facilitators in the pathway to culturally appropriate mental health care. Methods Web of Knowledge, Pubmed and Ovid databases were searched for literature on South Asian older adults or their family carers, their understandings of mental illness and dementia and their pattern of service use. Dates were from 1984 to 2012. Abstracts were assessed for relevance, followed by detailed reading of salient papers. Three researchers rated the quality of each included study. A narrative synthesis was undertaken of extracted and charted data. Results Eighteen studies met the eligibility criteria for the review. South Asians and health professionals highlighted several difficulties which deterred help seeking and access to care: a lack of knowledge of dementia and mental illness, and of local services; stigma; culturally preferred coping strategies; and linguistic and cultural barriers in communication and decision making. Conclusions To improve access for these groups, service users and providers need to be better informed; services need to be more culturally tailored, sometimes employing staff with similar cultural backgrounds; and health professionals can benefit from dementia education and knowledge of local services. These factors are key to the delivery of the National Dementia Strategy in England. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective Mild dementia is marked by deficits in cognition and everyday activities. However, few studies have translated findings from both areas of functioning into effective cognitive rehabilitation. The purpose of this review was to critically evaluate the existing literature on the type and success of interventions and on their extent of use of cognitive theory. Given the limited evidence base in this population, further insights were obtained from studies on mild cognitive impairment (MCI), which involves fewer cognitive and everyday functioning problems than dementia. Methods From the literature searches, 11 studies on mild dementia and three studies on MCI were obtained. Studies were only included if the interventions either targeted instrumental activities of daily living or activities of daily living directly or as an outcome measure or if the interventions focused on real-life aspects not captured in the standardised daily activities. For inclusion, patients needed a diagnosis of dementia or MCI, and Mini-Mental State Examination scores had to be above 17 for mild dementia. Results The majority of interventions indicated improved everyday activity performance in early dementia and MCI. Focusing on individual, as opposed to global, daily activities appeared to be an important determinant of intervention success in mild dementia but not in MCI. However, few attempts had been made to develop interventions grounded in evidence-based models. Conclusions This review highlights the need for further translation of the understanding of cognitive and everyday activity deficits into successful interventions for daily activities in MCI and early dementia. Hence, research is first required to link individual activities with cognitive domains. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed-methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers., Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed-method studies, published in English or German, focused on experiences of using technology-delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included., Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech-literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes., Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery., (© 2024 The Author(s). International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)