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Background: Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better . . . and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention., Methods: A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups., Findings: A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes., Conclusion: Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives : This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods : This was a cross-sectional, observational study. People with dementia and their carers ( n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results : Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans - Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04-12.99). Discussion : Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden., 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.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations., 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: 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.

Objectives: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer., Methods: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education)., Results: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes., Conclusions: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances., 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.

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice., 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: Dementia disproportionately affects women including persons living with dementia and caregivers. Person-centered care, rather than disease-focused, is recommended to improve care for affected persons including caregivers. General practitioners play a central role in dementia care but find it challenging due to inadequate training. The study aimed to assess if and how dementia guidelines provide clinicians with guidance on person-centred care for women affected by dementia., Methods: We searched for publicly available English-language guidelines on the overall management of dementia in MEDLINE, EMBASE and the Guidelines International Network repository. We employed deductive and summative content analysis, and categorized person-centered care guideline content based on established frameworks, and conveyed our results using summary statistics, text, and tables., Results: We reviewed 15 guidelines published from 2006 to 2020 in eight countries. Few (4, 23%) involved persons living with dementia or caregivers in guideline development. Regarding general person-centred care, guidelines mostly addressed the domains of exchange information (93%), share decisions (93%), enable self-management (93%) and address emotions (87%), while few offered content on manage uncertainty (33%) or foster a healing relationship (13%). Regarding dementia-specific person-centred care, most guidelines addressed intersectionality (tailoring care for diverse characteristics) (80%), but few included content on the domains of quality of life (67%), dignity (53%) or sex/gender issues (20%). Even when mentioned, the guidance was typically brief. We identified 32 general and 18 dementia-specific strategies to achieve person-centered care by compiling information from these guidelines., Conclusions: This study identified inconsistent and insufficient guideline content on person-centred care for women with dementia. Compiled strategies for achieving person-centred care could be used by developers to enhance existing and future dementia guidelines; and inform the development of policies or programs, education, tools for clinicians, and quality improvement measures for evaluating dementia care. Future research is crucial for promoting person-centred dementia care for women living with dementia., 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.

Participating in physical activity is beneficial for older people with dementia. Little is known however about the perceptions of people living with dementia undertaking an online-delivered exercise program. This study aimed to explore the experiences and perceptions of older people with dementia and their carers in Indonesia participating in an online-delivered exercise program, and factors that may influence acceptability to the program. An exploratory qualitative study design using semi-structured interviews was used. Data were recorded, transcribed verbatim, translated into English, and analyzed thematically. Twelve participants with dementia (mean age = 63.3 years) and 30 carers (26 family carers and 4 paid carers) (mean age = 37.9 years) were interviewed separately. Seven themes were identified: (i) Motivating factors to participate; (ii) Benefits for people with dementia; (iii) Impacts on carers; (iv) Challenges and enablers to exercising; (v) Carers' strategies for exercise engagement; (vi) Roles, relationships and supports; and (vii) Participants' receptiveness to online delivery of the exercise program. This study illustrated that an online-delivered exercise program was acceptable for people with dementia and their carers in Indonesia and reinforced the importance of carers' support for the exercise program. These findings can help physiotherapists and other exercise practitioners in considering the aspects of delivery that people with dementia and their carers value in participating in online-delivered exercise programs., Competing Interests: Declaration of conflicting interestThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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.

Dementia is a progressive condition and an umbrella term used to describe a set of symptoms that affects many older adults. Older adults living with dementia often experience social stigma, which can impact their quality of life. Most people with dementia need the assistance of a caregiver in order to enhance their health. The present study seeks to explore the perspective of nurses as the primary caregivers of people living with dementia in Saudi Arabia, focusing on the challenges faced by nurses and their reactions to these challenges. A descriptive qualitative approach using semi-structured interviews with 10 nurses with experience caring for people living with dementia from 2 hospitals in Jeddah, Saudi Arabia. Using thematic analysis, 4 main themes were identified: (1) types of support, (2) challenges when caring for people living with dementia, (3) society's views on people living with dementia, and (4) nurses' perceptions of dementia. The nurses stated that people living with dementia do not receive sufficient support from their families. Most participants believed that public awareness about dementia is insufficient. Increased efforts to raise public awareness about dementia could include harnessing social norms around family structure and respect for elders to improve care provided to people living with dementia., 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: To understand nurses' perceptions of quality nursing care in the dementia-specific care unit. As the world's population ages, the incidence of dementia is projected to rise in tandem. The requirement for skilled, dementia-trained registered nurses who can provide quality nursing care will need to increase accordingly to meet the needs of these individuals. Extensive research has been completed on dementia nursing care in a variety of settings; however, little research has been undertaken into nurses' perceptions of quality nursing care in the dementia-specific care unit. Understanding how registered nurses perceive quality nursing care in the dementia-specific care unit is important and provides valuable information about nursing practice in this environment for nurses and decision-makers. Gaining a better understanding of quality nursing care in this care unit may result in better nurse education and an improved patient experience. It may also assist nursing organisations, residential aged-care facilities, government bodies and nongovernment agencies that support, manage, and oversee dementia-specific care units., Method: A grounded theory study was conducted to understand nurses' perceptions of quality nursing care in dementia-specific care units. The study involved interviewing nine registered nurses working in two dementia-specific care units on the Gold Coast, Queensland. Data were collected during semi-structured interviews and analysed using both constant comparison and thematic analysis., Findings: Three themes emerged from this study- Caring at the Coalface , Labour of love and the Business of Dementia Healthcare. The largest theme, Labour of love , represents the personal reward and feeling of satisfaction six nurses said they experienced when interacting with individuals living in the dementia-specific care unit. They identified and repeatedly discussed the joy and fulfilment they experienced when caring for them, and considered this to be an essential element of quality nursing care. It was evident from the data that the nurses cared very deeply about these individuals, and despite increased risks to personal safety at work, they did not want to work anywhere else. This article reports on the largest and key theme identified in the study Labour of Love.

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers - otherwise known as care partners - require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire., Aim: This research aimed to explore and describe family carers' experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia's expectations for the future and what they believed was important for the person to whom they provided care., Method: Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis., Findings: Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control., Discussion: This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers' perspectives of the changing nature of decision making during the dementia trajectory., Conclusion: Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is 'person centred' now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

The rising older population in Japan is associated with a rise in cases of dementia. Support for the increased number of family caregivers of people living with dementia is crucial, as caring may negatively affect a family caregiver's health. This study seeks to evaluate the feasibility and applicability of a recently developed Japanese version of START (STrAtegies for RelaTives). START is a psychosocial coping intervention program developed in the United Kingdom that has been shown to improve caregivers' mood and quality of life in a randomized controlled trial. We made changes to START (e.g., idioms, linguistic nuance, and providing care insurance information suited for Japan) to make it culturally appropriate. Fourteen Japanese female family caregivers of relatives with mild dementia (n = 10) or mild cognitive impairment (n = 4) were referred to the study, but six were excluded owing to illness and busyness. This single-arm study had a before-after trial evaluating psychological outcomes including depression, anxiety, quality of life, and subjective care burden. The acceptance retention and satisfaction rate suggest the feasibility and acceptability of the START program; 8/14 (>55%) eligible, prospective participants consented and were included in this study, all (8/8) of whom completed all START sessions. The mean program satisfaction score was 30.25 (standard deviation = 2.25) out of a potential 32. The results suggest that it is feasible and acceptable to deliver START in Japanese and based on the results of analysis using a linear mixed model, there is initial indication that the intervention improved family caregivers' quality of life, depressive symptoms, and care burden.

Background: Special care units are a well-utilized approach in the long-term care for persons with dementia. A therapeutic goal of such settings is to provide meaningful engagement and a sense of community that is crucial for the overall quality of life. In recent years, several studies followed this notion by investigating residents' social interactions and the influence of the environment on these interactions., Aims: This review aims to synthesize the literature on the social interactions of persons with dementia living in special care units., Design: A mixed-methods systematic review was conducted., Methods: Literature was searched in PubMed, CINAHL, PsycINFO, the Cochrane Library and Web of Science databases. Additionally, reference lists of relevant articles were searched. Studies were screened, data were extracted and the quality was appraised. Separate syntheses were conducted for qualitative and quantitative studies, which were subsequently merged in the final mixed-methods synthesis., Results: In total, 18 articles were included, investigating large-scale, small-scale and homelike special care units and green care farms. Residents in special care units experience few social interactions but more than those in the comparative groups. Opportunities to interact are only marginally seized. Interactions typically occur in small groups and are facilitated by familiarity and the organizational environment. Residents mainly rely on staff members to create social interaction, for example initiating or facilitating resident-to-resident interaction., Conclusion: Although the evidence base is increasing, it is still fragmented and built on different concepts, interventions, control groups and measurements. Nevertheless, the first conclusions suggest a positive impact of special care units on residents' social interactions. Although the review yielded a more comprehensive picture of residents' social life, further high-quality research built on a sound theoretical background is needed.

Sleep is important for healthy ageing. Data are limited concerning the sleep and health of New Zealand families affected by cognitive impairment or dementia. This postal survey asked about the sleep of 526 family carers and explored predictors of, and outcomes associated with poorer sleep. Linear and binominal logistic regression were used to identify independent predictors and outcomes of carers' sleep status. Using the Insomnia Severity Index, 23.5% of carers scored in the moderate-severe range and 43.0% in the mild range for sleep disturbance. More than a quarter indicated that their family member had difficulties falling asleep, getting up during the night, or waking too early. Over half of care recipients were considered to sleep too much during the day. Independent predictors for carers' reporting greater sleep disturbance included being female, caregiving at night, poorer self-rated health, and the care recipient having more disturbed sleep. Moderate-severe sleep disturbance was independently associated with poorer self-rated health and living standards, use of sleeping medications, as well as considering transitioning their family member into formal care within the year. These findings have implications for the wellbeing and trajectory of family carers as well as for health and aged care services.

BACKGROUND: The number of persons diagnosed with dementia is projected to triple to 14 million by 2050. The significance of these projections is particularly relevant to older women (>65 years), who are more likely to provide dementia caregiving for a husband than vice versa. Research has identified consistent themes around the impact of caregiving during the caregiving experience, yet there is limited research exploring the ongoing impact during the transition to widowhood. Moreover, there is a paucity of research examining differences between rural and urban spousal dementia caregivers. AIMS: The aims were to compare differences between older rural and urban spousal caregivers on physical and mental health factors affecting the transition from caregiver to widow and to identify resources the women used during this transition over 12 months. METHOD: This mixed-methods longitudinal study recruited 13 urban and nine rural female spousal caregivers. Participants were interviewed three times over 12 months. The dependent variables were depression (measured using Center for Epidemiologic Studies Depression Scale), physical and mental functioning (measured using the 12-item Medical Outcomes Study-Short Form Health Survey Version 2). RESULTS: No statistically significant differences were detected between rural and urban female caregivers on the dependent variables. However, rural caregivers scored higher on depression and lower on both physical and mental functioning compared to their urban counterparts. CONCLUSIONS: The findings have clinical and research implications. Psychiatric nurses are well positioned to provide education related to dementia information deficits; implement interventions that facilitate bereavement, resilience, self-care, and identity; advocate for additional services; and conduct larger scale studies with a more diverse sample of female spousal caregivers.

Ageing in place is a key principle of older care services in many countries, especially in China where the social convention, cultural expectation and legal obligation emphasise that looking after parents is the children's responsibility. As a result, the majority of older, frail Chinese have been cared for at home by their families. Previous studies have argued that being cared for at home contributes positively to the well-being and quality of life of older people and to economic cost. However, due to the sociocultural, economic and demographic changes in China, older people and their family caregivers are facing many challenges as they 'age in place' at home. This study aims to explore the meaning of family supported home care in China from the perspectives of people with dementia and family caregivers. The study is based on qualitative data collected from 24 people with dementia and family caregivers recruited from one mental health centre in Shandong province, China. Three main themes and nine subthemes were found: home care may create a sense of social isolation; home care is a burden; home care versus institutional care. The study suggests that while home care may bring social and psychological benefits, it also can be a barrier to building social connection, receiving social support, and other related services in China.

Purpose: To evaluate the feasibility of Hear-Communicate-Remember, a training programme developed for family caregivers of people with dementia and hearing impairment that integrated hearing, communication and memory strategies, which was intended to be delivered via telehealth., Materials and Methods: Participants included six dyads consisting of adults with dementia and hearing impairment and their family caregivers. Data collection involved a combination of semi-structured interviews, self-report questionnaires and field notes., Results: Analysis of the qualitative interviews revealed four themes: appropriateness of intervention resources, considerations for the delivery of intervention via telehealth, knowledge and application of intervention strategies, and impact of the intervention on day-to-day life. Results from the satisfaction survey indicated that caregiver participants were mostly satisfied with all aspects of the intervention except the use of some technological components. The field notes described challenges with implementation via telehealth., Conclusions: Future research involving a cohort comparison study with a larger cohort of dyads is needed to establish treatment efficacy.

The purpose of this study was to examine the associations between three indicators of social support and self-rated health among caregivers of people with dementia, and whether caregiving burden mediated such associations. Data from the Resources for Enhancing Alzheimer's Caregiver Health II (REACH II; N  = 637) was used and multivariate analyses were conducted to test the mediation effects of caregiving burden by PROCESS for v3.2.03. The results revealed that three indicators of social support (received support, social network, and negative interactions) were all significantly associated with self-rated health. Findings also showed that caregiving burden acted as a mediator mechanism through which the associations between social network and self-rated health, negative interactions and self-rated health occurred. Results suggest that there is a need for more comprehensive caregiving assessments as well as multicomponent interventions that include improving and expanding social networks for caregivers of people with dementia. Findings also highlight the importance of minimizing interpersonal conflicts with others and providing more multicomponent programs aimed at reducing caregiving burden.

The purpose of this article is to analyse the available literature describing the economic burden of dementia and to compare costs between studies examining cost drivers. To shed light on this field, a systematic review is performed using PubMed, the Cochrane Library and Web of Science. An eight-year retrospective horizon was considered until 25 May 2018. Several papers were obtained from the database search (n = 23), being others (n = 3) identified through other sources (hand-searching) because we did not detect it through the three databases. The cost estimates were compared between three perspectives: state/publicly funded health services, third-party/private sector/not-for-profit organisations and patient and family and/or societal. The estimated total annual cost per person with dementia in Europe is on average €32,506.73 (n = 10), whereas for the United States, it gets €42,898.65 (n = 2). Furthermore, differences are appreciated by type of costs. Besides, differences by severity groups are also considered. Overall, the higher the severity the higher the associated costs. Dementia imposes a huge economic burden. The figures here presented provide a good framework to quantify these costs for both, economic experts and researchers, and policy decision makers.

Objectives: Within an implementation study, we investigated the effectiveness of a combined community-based day care programme for persons with dementia and their carers versus traditional psychogeriatric nursing home-based day care. The effects on needs, sense of competence, burden and quality of life of the family carers were studied., Methods: A pretest-posttest control group design among family carers of people with dementia who joined community-based day care centres ( n  = 67) or nursing home-based day care centres ( n  = 64)., Results: After six months, family carers using community-based day care more often expressed an unmet need for support regarding psychological distress than carers utilising nursing home-based day care. No effect of community-based day care on sense of competence was found. However, carers with a low sense of competence at baseline using community-based compared to nursing home-based day care became less emotionally burdened by behaviour and mood problems of their relative. Conclusion and discussion: Overall, no added value of community-based day care on needs, sense of competence, burden and quality of life was found. Increased unmet needs on psychological distress may have been caused by the increased awareness of carers participating in the carer programme of community-based day care regarding their own unmet support needs. For carers with a low sense of competence, community-based day care proves to decrease the impact of behaviour and mood problems of their relative. A larger controlled follow-up study is recommended to understand the long-term effects of community-based day care over nursing home-based day care.

Many people with dementia, supported by family carers, prefer to live at home and may rely on homecare support services. People with dementia are also often living with multimorbidities, including cancer. The main risk factor for both cancer and dementia is age and the number of people living with dementia and cancer likely to rise. Upskilling the social care workforce to facilitate more complex care is central to national workforce strategies and challenges. Training and education development must also respond to the key requirements of a homecare workforce experiencing financial, recruitment and retention difficulties. This systematic review of reviews provides an overview of dementia and cancer training and education accessible to the homecare workforce. Findings reveal there is a diverse range of training and education available, with mixed evidence of effectiveness. Key barriers and facilitators to effective training and education are identified in order to inform future training, education and learning development for the homecare workforce supporting people with dementia and cancer.

Objectives: Experiencing dementia-related challenges in a dementia simulation program can be useful for caregivers to understand perspectives of people with dementia possibly leading to improvement in the quality of care and positive outcomes in caregivers and people with dementia. Previous studies about dementia simulation programs have been conducted in Western countries and no research has been conducted in Asian countries. The purpose of this qualitative study was to explore experiences of caregivers of people with dementia who participated in a Korean dementia simulation program., Methods: A descriptive phenomenological study using thematic analysis with ATLAS.ti 8 software was used. A total of 28 Korean caregivers were interviewed about two weeks after participating in the Korean dementia simulation program that was modified from a program developed in USA by considering Korean cultures., Results: Three key themes with seven subthemes emerged. The present study demonstrated that participation in the program helped caregivers have more empathy, affected their care strategies positively leading to emotional and social benefits on the care dyads, and increased awareness in possible changes due to aging and the risk of dementia., Conclusions: The present study was the first study that demonstrated caregivers' positive experiences in and benefits from participation in a dementia simulation program in an Asian country. Caregivers in the other Asian countries may have similar benefits from participation in dementia simulation programs.

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

Background: Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers., Method: A cross-sectional survey was administered to family caregivers ( n = 430) in Northern Norway during April to November 2016. The use of healthcare services was categorized into two types according to principal component analysis: home-based services and out-of-home respite care services ( R 2 = 44.1%). Predictors of service use were examined with bivariate correlation, multiple linear regression, and Poisson regression analyses., Results: The use of home-based services among persons with dementia was significantly higher for persons with advanced age, persons living in urban areas, persons living in an assisted living facility, persons living alone, and persons able to manage being alone for a short period of time. Among the family caregiver variables, higher age, status as a daughter, son, or other family member, higher educational level, and full-time employment also predicted greater use of home-based services. Same ethnicity was associated with use of fewer home-based services. The use of out-of-home respite care services was significantly higher among male persons with dementia and among those living in urban areas. In addition, fewer out-of-home respite care services were used by male caregivers or daughters of the care recipient, while the use was higher when the caregivers experienced more caregiving demands or had provided care for longer periods of time., Conclusions: These results indicate areas that policymakers and healthcare providers should consider to identify families who underutilize healthcare services and to achieve a more equal and efficient allocation of services in accordance with families' needs.

As the prevalence of persons with dementia increases, a larger, trained, and skilled healthcare workforce is needed. Attention has been given to models of person-centered care as a standard for dementia care. One promising role to deliver person-centered care is the care coordinator assistant. An inquiry about care coordinator assistant's job satisfaction is reasonable to consider for retention and quality improvement purposes. We evaluated care coordinator assistants' job satisfaction quantitatively and qualitatively. This study was part of a Centers for Medicare & Medicaid Services Health Care Innovation Award to the Indiana University School of Medicine. Sixteen care coordinator assistants, predominately female, African American or Caucasian, college graduates with a mean age of 43.1 years participated. Care coordinator assistants wrote quarterly case reports to share stories, lessons learned, and/or the impact of their job and completed the revised Job Satisfaction Inventory and Job in General scales during the second year of the Centers for Medicare & Medicaid Services award. For the Job Descriptive Index subscales promotion, supervision, and coworkers and Job in General, care coordinator assistants scored similar to normative means. Care coordinator assistants reported significantly higher satisfaction on the work subscale and significantly lower satisfaction on the pay subscale compared to normative data. Care coordinator assistants completed 119 quarterly case reports. Job satisfaction and teamwork were recurring themes in case reports, referenced in 47.1% and 60.5% of case reports, respectively. To address the demands of increasing dementia diagnoses, care coordinator assistants can constitute a compassionate, competent, and satisfied workforce. Training care coordinator assistants to work together in a team to address the needs of persons with dementia and caregivers provides a viable model of workforce development necessary to meet the growing demands of this population.

Background: Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia., Methods: Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI). Findings were synthesized using the Joanna Briggs Institute approach to qualitative synthesis by meta-aggregation., Results: Seventeen papers were critically appraised, with 13 meeting the inclusion criteria. Participants were mostly of South Asians of Indian background; followed by Pakistani with a few Sri Lankans. Missing South Asian countries from the current evidence base included those from Bangladesh, Bhutan, Maldives, and Nepal. Three meta-synthesis themes emerged from the analysis: (1) a poor awareness and understanding of dementia, (2) the experience of caregiving, and (3) the attitudes toward dementia care provision., Conclusions: A consistent message from this qualitative synthesis was the limited knowledge and understanding of dementia amongst the South Asians. Whilst symptoms of dementia such as 'memory loss' were believed to be a part of a normal ageing process, some South Asian carers viewed dementia as demons or God's punishments. Most studies reported that many South Asians were explicit in associating stigmas with dementia.

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.

Background: Advance care planning (ACP) provides clarity on goals and preferences for future health-care decisions, the timeliness of which is critical for persons with dementia., Aim: This study assessed Primary Care Collaborative Memory Clinic (PCCMC) health-care practitioners' desire for more education on ACP, capacity for and attitudes toward ACP, and current ACP practices in their regular family practice and in their PCCMC., Methods: Primary Care Collaborative Memory Clinic health-care professionals completed a questionnaire in which they rated their interest in learning various ACP-related topics (5-point scale: not at all to very much so), attitudes toward ACP, and the importance of and perceived degree of responsibility for ACP (5-point scale: not at all to extremely). Respondents estimated ACP completion in regular family practice and PCCMC., Results: Two hundred and sixty one surveys were completed. Mean knowledge ratings were moderate (M = 3.0) and mean ratings of interest in ACP topics were all high (median ≥ 4). Despite the perception that ACP is very important (M = 4.9) and the responsibility of PCCMCs (M = 3.7), the majority of respondents estimated that 40% or fewer patients have had ACP. Ratings of willingness to conduct ACP (M = 3.7) and comfort level (M = 3.4) were moderate but significantly exceeded ratings of ability (M = 2.9), comfort (M = 3.5), and confidence (M = 2.8)., Conclusion: There was a striking disconnect between perceptions of the importance of completing ACP for persons with dementia and actual ACP completion rates. Primary Care Collaborative Memory Clinics may be in an ideal position to support ACP discussions; however, there is a need to improve health-care professionals' knowledge and attitudes toward ACP.