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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.)

Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia., Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review., Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role ., Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© 2024 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background: People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care., Methods: Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data., Findings: Twenty-seven unpaid carers ( n = 21) and professionals ( n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services., Conclusions: To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Aim: The aim of this qualitative study was to explore the barriers and facilitators to accessing and receiving mental health care for paid and unpaid carers of older adults., Methods: Unpaid and paid carers for older adults in England were interviewed remotely between May and December 2022. Participants were asked about their experiences of mental health needs and support. Reflexive thematic analysis was used to analyse the data., Results: Thirty-seven carers participated (n paid  = 9; n unpaid  = 28), with the majority caring for a parent with dementia. Thematic analysis generated four themes: lack of healthcare support, social care system failing to enable time off, personal barriers and unsupportive work culture. Healthcare professionals failed to provide any link to mental health services, including when a dementia diagnosis was received. Structural and organisational barriers were evidenced by carers being unable to take time off from their unpaid caring duties or paid caring role, due to an absence of social care support for their relative., Conclusions: This is the first study to have explored the barriers to mental health care and support for paid and unpaid carers for older adults and suggests that structural, organisational and personal barriers cause severe difficulties in accessing required support to care for older relatives, services users and residents., Public Involvement: Two unpaid carers aided with the development of topic guides, data analysis, interpretation and dissemination. Both were supported and trained to code anonymised transcripts., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: People living with Long Term Neurological Conditions (LTNCs) value peer support and social activities. Psychological support and wellbeing enables them to manage their condition. Social prescribing is a formal process of referring patients to a link worker to co-design a plan to improve their health and wellbeing. Intervention involves supporting participation in activities based within the individual's local community. This study aimed to explore the barriers and enablers to accessing social prescribing for people living with LTNCs (plwLTNCs)., Methods: A total of four focus groups were carried out with 17 participants, including different neurological conditions such as multiple sclerosis, Fragile X Syndrome, epilepsy, and traumatic brain injury. Two participants were family carers and supported people living with epilepsy and motor neurone disease. Findings were analysed using thematic analysis., Results: Five themes were identified: (1) Lack of knowledge; (2) Service provision difficulties; (3) Benefits of social prescribing activities; (4) Physical barriers and (5) Psychological barriers. There was a lack of knowledge about social prescribing and what it actually was. Participants anticipated service provision difficulties relating to funding, link workers need for knowledge of LTNC's and for activities to be varied and individualised. The potential benefits of social prescribing activities were recognised across the groups especially its potential to tackle loneliness and to offer plwLTNC's purpose. Participants highlighted a number of physical barriers such as transport and accessibility; and psychological barriers such as anxiety and stigma., Conclusion: Social prescribing aims to address the health inequalities of those living with long-term conditions, however currently it is likely to exclude plwLTNCs. Recommendations for practice and future research are made., (© 2021. The Author(s).)

Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick-Edinburgh Mental Well-Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants' socioeconomic background. Data were analysed using paired samples t-tests to compare well-being scores between baseline and follow-up assessments. A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3- and 6-month follow-up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well-being was significantly higher at both follow-ups. This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country., (© 2021 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic., Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis., Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines., Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

Background: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well-being., Aims: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak., Methods: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being., Results: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3., Conclusions: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Purpose: People living with Motor Neurone Disease (plwMND) have emphasised the importance of psychological support and well-being in helping them manage their condition. Social prescribing is a formal process of referring patients with largely socioeconomic and psychosocial issues to a link worker to co-design a plan to improve their health and well-being. Intervention involves supporting engagement in meaningful activities based within the individual's local community. This pilot project aimed to explore the application of social prescribing with plwMND., Methods: A cohort of plwMND were supported by an occupational therapist and link worker to identify and access community-based activities. Qualitative interviews were completed post-intervention with the plwMND and the link workers. Findings were analysed using thematic analysis., Results: A total of nine plwMND took part in this pilot service, and five plwMND and four link workers were interviewed. PlwMND valued participation and wanted to engage in community-based activities. Those with mild symptomatology were able to access activities and reported a positive impact on their well-being. Those with more complex needs, particularly reduced mobility, experienced significant barriers to participation. Barriers included transport, equipment provision, lack of company to support participation and lack of confidence using mobility aids in a community environment. Link workers valued joint working with an occupational therapist., Conclusion: Social prescribing aims to address the health inequalities of those living with long-term conditions, although currently it likely excludes plwMND. Future work needs to quantitatively evaluate the effects of the service on the well-being of plwMND., (© 2020 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19., Methods: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions., Results: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia., Conclusions: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

Background: People with young-onset dementia (YOD) can often struggle getting the right treatment. This is because of their frequently different characteristics and needs compared to people with late-onset dementia. The aim of this project was to assess a memory service for its adaptation to the needs and wishes of people with YOD and their carers., Methods: This project evaluated a memory service in the North West of England by performing two focus groups with clinical staff and six semi-structured interviews with people with YOD and carers. The focus groups took place on site and lasted one hour each. People with YOD and their carers were identified via the memory clinics caseload and via the local Alzheimer's Society charity organisation. Both focus groups and interviews were audio-recorded and transcribed, and data were analysed using thematic analysis. The public (a person living with YOD and his carer) were involved from the design stages of the project through to the analysis and dissemination., Results: Eleven members of staff with different clinical backgrounds participated in the focus groups and six interviews were held with people with YOD and their carers. Both indicated that whilst the diagnostic process is relatively well conducted at the service, the post-diagnostic service has many gaps. These include limited post-diagnostic support by the service, better enabling peer support, as well as providing meaningful activities, as some activities provided might be more suitable to older adults with dementia., Conclusions: Post-diagnostic services and support for people with YOD and their carers need to be improved. The next step will be to implement the findings from this service evaluation in practice and improve service satisfaction and relevance to people with YOD.

Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement - respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.

Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia., Method: Preferences from 100 carers, recruited through carers' organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'., Results: The most preferred attributes were 'respite care, available regularly to fit your needs' (coefficient 1.29, p = < 0.001) and 'home care provided regularly for as long as needed' (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall., Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers' preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.

Objective: In order to increase the efficacy of psychosocial interventions in dementia, a step-by-step process translating evidence and public engagement should be adhered to. This paper describes such a process by involving a two-stage focus group with people with dementia (PwD), informal carers, and staff., Methods: Based on previous evidence, general aspects of effective interventions were drawn out. These were tested in the first stage of focus groups, one with informal carers and PwD and one with staff. Findings from this stage helped shape the intervention further specifying its content. In the second stage, participants were consulted about the detailed components., Findings: The extant evidence base and focus groups helped to identify six practical and situation-specific elements worthy of consideration in planning such an intervention, including underlying theory and personal motivations for participation. Carers, PwD, and staff highlighted the importance of rapport between practitioners and PwD prior to commencing the intervention. It was also considered important that the intervention would be personalised to each individual., Conclusions: This paper shows how valuable public involvement can be to intervention development, and outlines a process of public involvement for future intervention development. The next step would be to formally test the intervention.

Aim: The aim of this study was to explicate the outcomes of home support interventions for older people with dementia and/or their carers to inform clinical practice, policy and research., Background: Most people with dementia receive support at home. However, components and effectiveness of home support interventions have been little explored., Design: Systematic review with narrative summary., Data Sources: Electronic searches of published studies in English using PubMed, Cochrane Central Register of Controlled Trials, PsychINFO, CINAHL, Applied Social Science Index and CSA Social Services Abstracts. Databases and sources were searched from inception to April 2014 with no date restrictions to locate studies., Review Methods: The PRISMA statement was followed and established systematic review methods used. Using 14 components of care for people with dementia and their carers, identified previously, data across studies were synthesized. Interventions were grouped and described and effectiveness ratings applied. Qualitative studies were synthesized using key themes., Results: Seventy studies (four qualitative) were included. Most were directed to carers and of high quality. Seven interventions for carers and two for people with dementia were identified, covering 81% of studies. Those relating to daily living, cognitive training and physical activity for people with dementia were absent. Measures of effectiveness were influenced mainly by the intensity (duration and frequency) of interventions. Those containing education, social support and behaviour management appeared most effective., Conclusion: These interventions reflect emergent patterns of home support. Research is required to identify effective interventions linked to the stage of dementia, which can be applied as part of routine clinical care., (© 2017 John Wiley & Sons Ltd.)

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., (Copyright © 2017 John Wiley & Sons, Ltd.)

Objectives: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries., Design: Cross-sectional study., Setting: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom)., Participants: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers., Measurements: Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden., Results: Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence., Conclusion: A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance deficits in IADLs in dementia., Methods: A total of 581 carers completed the revised Interview for Deterioration in Daily Living Activities in Dementia 2 to rate their relative's everyday functioning., Results: Initiating and performing IADLs deteriorated hierarchically, while people with dementia were consistently most impaired in initiating using the computer and managing finances. Initiating preparing a cold or hot meal and managing finances were more impaired than their performance, whereas performing maintaining an active social life for example were more impaired than their initiative., Conclusion: Findings can help identify the severity of dementia by understanding deficits in initiative and performance. This study has implications for the development of targeted interventions depending on the stage of dementia.

Background: The ability to perform instrumental activities of daily living deteriorates early in dementia and affects people with dementia and their carers. However, little is known about individual instrumental activities of daily living impairments. This study therefore investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress. Moreover, this study explored the contribution of social instrumental activities of daily livings, which to date have received little or no attention., Methods: Twenty carers were administered a revised Interview for Deterioration for Daily Living Activities in Dementia and measures of carer stress (General Health Questionnaire-12) and quality of life in dementia (Quality of Life in Alzheimer's Disease). The people with dementia completed measures of general cognition (Mini-Mental State Examination and Montreal Cognitive Assessment). Data were analysed using frequency and bivariate correlation analyses and basic thematic analysis was employed to the qualitative data on carer stress., Results: Carer interviews showed that instrumental activities of daily living impairments were associated more with performance than with initiative deficits. Increased social isolation and reluctance to engage in hobbies were particularly stressful to carers and impacted negatively on the people with dementia quality of life, yet were not reported as critical in the qualitative assessment., Conclusions: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being. The revised Interview for Deterioration for Daily Living Activities in Dementia with its social instrumental activities of daily livings can help shift the focus of interventions to address those activities that are frequently impaired in mild dementia and relate to people with dementia and carer well-being., (© The Author(s) 2014.)

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., (Copyright © 2015 John Wiley & Sons, Ltd.)

Aim: To review the evidence for home support approaches directed at tertiary prevention; ameliorating difficulties and enhancing well-being., Background: With population ageing dementia represents a significant care challenge with 60% of people with dementia living at home. However, little is known about existing forms of home support and their relative effectiveness., Design: A two-stage design: First, an overview of systematic reviews of psychosocial interventions for dementia to identify their components; second, a systematic review of the effectiveness of home support interventions to older people with dementia/their carers., Methods: We will search electronic databases using specific search terms with additional searches of other known studies. Data will be extracted by two reviewers according to pre-determined categories. An initial synthesis will elicit components of interventions from stage 1 and operationalize them in terms of specific techniques. These will then be used in synthesis of data in stage 2, to determine the extent to which each home support intervention relies on these components and distill evidence concerning outcomes. Studies from stage 2 are expected to be methodologically diverse; if so, a narrative approach to synthesis will be taken. Study findings will be explored with Patient, Public and Carer Involvement groups., Discussion: The review seeks to develop a theory of home support: how and why interventions may work; in what contexts; and for whom. We will identify effective home support approaches, informing policy-makers and establishing how they might be experienced by people with dementia and their carers., (© 2015 John Wiley & Sons Ltd.)

Objectives: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study., Methods: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL., Results: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. RESULTS of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia., Conclusion: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages.

The aim of this 3-UK-nation online survey was to explore the impact of the cost of living crisis on the lives of people with dementia and their carers, specifically on their ability to access social care and support services, and the contributions of gender and ethnic background. A 3-UK-nation (England, Wales, Northern Ireland) 31-item online survey was conducted in October 2022 asking people with dementia, carers, and people knowing but not caring for someone with dementia about social care and support service access, cost of living crisis, and changes due to the cost of living crisis. Frequency analysis and Chi-square analysis were employed to assess whether forms of payment for services varied by gender. Pearson correlation analysis and binary logistic regression were used to assess whether gender and ethnicity were associated with struggling to pay for care since the crisis. A total of 1,095 people with dementia, unpaid carers, and people who knew but not cared for someone with dementia participated. Of those, 745 people with dementia were utilising community-based social care and support services. Twenty percent of those with complete data had reduced their spending on care services since the crisis. Men and those from non-white ethnic backgrounds were at significantly increased odds of struggling to pay for care services. The cost of living crisis has led to exacerbated inequalities in accessing and using dementia care. Men and those from non-white ethnic backgrounds in particular need to receive greater support in accessing care. [ABSTRACT FROM AUTHOR]

This systematic review examined how information communication technologies (ICT) has been used to access remote post-diagnostic support that address the needs people with dementia, or those of dyad, and explored care recipients' views on accessing support remotely. 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. The search yielded 8,485 citations. Following the removal of duplicates and screening processes, 18 papers reporting on 17 studies were included. Studies described a range of post-diagnostic support, including medical follow-ups and therapeutic sessions, and were often delivered on a one-to-one basis via videoconferencing software. Whilst often relying on assistance from unpaid carers, people with dementia directly engaged with ICT to access post-diagnostic support in 13 studies. Accessing post-diagnostic support remotely appears feasible, nevertheless, care recipients' views were mixed. Access was frequently facilitated by supplying devices and providing ongoing technological support. Accessing post-diagnostic support remotely is likely to benefit some care recipients, however, to prevent widening inequalities in access, services within the current hybrid landscape need to accommodate to people who are digitally excluded. Future research should capture the support provided by unpaid carers to facilitate the engagement of people with dementia to remote post-diagnostic support. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic's constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers' emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents' quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers. [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]

The COVID‐19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID‐19 among community‐dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community‐based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community‐based services in Italy, participated in remote semi‐structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in‐person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID‐19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID‐19. Face‐to‐face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face‐to‐face activities could better counterbalance the multiple adverse outcomes of COVID‐19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high‐quality care even during pandemic times. [ABSTRACT FROM AUTHOR]

Purpose: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. Methods: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. Results: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. Conclusion: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing. [ABSTRACT FROM AUTHOR]

Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. 50 semi-structured interviews were conducted with unpaid carers (n = 42) and PLWD (n = 8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions. [ABSTRACT FROM AUTHOR]

Background: Sudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD).Methods: Unpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media.Findings: A total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these.Discussion: In light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities. Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD's initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity. Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours. Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents. [ABSTRACT FROM AUTHOR]

Objective:Studies indicate a limited understanding of dementia and its associated symptoms, causes and consequences among South Asian older adults. As a consequence, fewer people from this ethnic group receive a diagnosis of dementia. The aim of this study was to adapt the previously designed Barts Explanatory Model Inventory Checklist (BEMI-C), a tool designed to elicit perceptions of mental illness from people with different cultural backgrounds, for use with people with dementia in the South Asian population. Method:Both a literature review and 25 qualitative interviews were conducted to find themes and perceptions that are relevant to the South Asian culture in recognising and dealing with symptoms of dementia. The emergent themes and perceptions were then added to the BEMI-C through synthesis of findings. Results:The initial four checklists of symptoms, causes, consequences and treatments from the BEMI-C were retained in the new BEMI-Dementia (BEMI-D) and expanded with six additional themes, including 123 new perceptions relevant to the understanding of dementia. All new themes emerged from the qualitative interviews, some of which were also found in the literature. Conclusion:Given the national priority of improving dementia awareness and timely diagnosis, the BEMI-D can serve as a useful tool, in research and perhaps practice, to assess the barriers to dementia service uptake in this population and their understandings of dementia. Based on the detailed methodological description of the adaptation of the BEMI-C, this paper further suggests how this tool can be adapted to suit other ethnic minority groups. [ABSTRACT FROM AUTHOR]