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Objectives: 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., Method: Concepts relating to dementia and ICT were searched across six databases (PsychInfo, PubMed, Cochrane Library, CINAHL, Social Care Online, and Web of Science) in March 2021 and updated in March 2022. Studies published from 1990 and written in English, German or French were considered for inclusion. Methodological quality was appraised using the Hawker quality assessment tool and reporting structured according to PRISMA guidelines., Results: The search yielded 8,485 citations. Following the removal of duplicates and 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., Conclusions: 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.

Objectives: 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., Methods: 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., Results: 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., Conclusions: 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.

Background: Managing finances in dementia and on someone else's behalf can be difficult, especially with navigating the legalities surrounding this activity. With a lack of previous evidence, the aim of this qualitative study was to explore how people living with dementia and unpaid carers are planning the financing of dementia care and deal with legal issues surrounding finances., Methods: We recruited people living with dementia and unpaid carers from across the UK between February and May 2022. The topic guide was developed with two unpaid carers as advisers, and both contributed to the analysis and interpretation of findings, as well as dissemination. Participants were interviewed remotely, and transcripts analysed using inductive thematic analysis., Results: Thirty unpaid carers and people with dementia participated. We generated three themes: Changes to family dynamics; Barriers to implementing legal arrangements in practice; Planning to pay for future care. Arranging financial management involved difficult family dynamics for some, including strained relationships between the carer and person cared for, and among carers. There was little to no guidance on how finances should be handled, causing difficulties in the implementation even when legal agreements were in place. The lack of guidance was equally experienced for information about how to pay for care and plan for paying for future care., Conclusions: Post-diagnostic support needs to include legal and financial advice, with clearer guidance on how to access financial support to pay for care. Future quantitative research should explore the link between economic background and access to financial support.

Objectives: Healthcare services for people living with dementia (PLWD) are stretched, and government promises of increased funding remain undelivered. With the UK dementia population to surpass 1 million by 2024, and dementia care costs predicted to almost treble by 2040, it is essential we understand differences in healthcare use among PLWD. This study aimed to explore social and spatial variations in healthcare use among people diagnosed with dementia (2002-2016)., Methods: Data were derived from Electronic Health Records of Clinical Practice Research Datalink GP patients in England ( n  = 142,302). To standardise healthcare contacts, rates of healthcare contacts per year were calculated for three primary (GP observations and medications) and three secondary healthcare types [Accident & Emergency (A&E) attendances and, emergency and elective hospital admissions]. Fully-adjusted generalised linear regression models were used to identify healthcare use variation by social and spatial groups. Twelve models were generated, one for each healthcare type in early- and late-onset populations separately., Results: This study highlights numerous social and spatial variations in healthcare use among PLWD. Among PLWD, several groups tended to have healthcare service use more closely associated with negative outcomes, including a greater likelihood of A&E attendances and emergency and elective hospital admissions. These groups include: men, people from White ethnicity groups and people from more deprived and rural areas., Conclusions: Systemic and social measures are needed to reduce variations in healthcare use inequalities in PWLD. These include greater healthcare continuity, health checks and medicines reviews, culturally appropriate services, better and more accessible treatment and improved infrastructure.

Objectives: The aim of this Part I systematic review was to understand the impact of the COVID-19 pandemic on the lives of people with dementia living in the community or in residential care. Part II focused on unpaid carers. Methods: This review was registered on PROSPERO [CRD42021248050]. Five data bases (PubMed, CINAHL, Embase, Scopus, Web of Science) were searched in July 2021. Studies were included if they reported on the impacts of the pandemic on people living with dementia, either in the community or residential settings, and published in English, German, Polish, or Spanish. Risk of bias was assessed using the Standard Quality Assessment QualSyst. Results: Forty papers from 33 studies reported on the effects of COVID-19 on people with dementia. Included studies were conducted across 15 countries, focusing on single-country evaluations except in one study. Three studies focused on care homes, whilst the remainder reported on the community. Studies were categorised into five impacts: Cognition; Independence and physical functioning; Behavioural symptoms; Well-being; and Access to care. All studies evidenced the negative pandemic impacts, including faster cognitive, physical, and behavioural deterioration, limited access to care, and poorer mental and social health. Conclusions: Future restrictions need to consider the need for people with dementia to stay cognitively, physically, and socially stimulated to live well, and this review provides a call for a future pandemic strategy for dementia. Longitudinal research is required on the long-term impacts of the pandemic on the lives of people with dementia, including time to care home entry.

Objectives: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe., Methods: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance., Results: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many., Conclusions: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

Objectives: 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., Methods: Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis., Results: 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., Conclusions: 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.

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers., Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all., Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access., Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support.

Objectives: 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., Method: 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., Results: 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., Conclusions: 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.

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.

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.