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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. [ABSTRACT FROM AUTHOR]

Dementia-related sleep changes can lead to disruptions among families living with dementia which can jeopardise carers' wellbeing and ability to provide support. This research explores and represents the sleep of family caregivers across the trajectory of caring, before, during, and after the key period of their care recipient moving into residential care. The focus of this paper is viewing dementia caregiving as a trajectory, characterised by care needs which change over time. Semi-structured interviews were conducted with 20 carers whose family member with dementia had transitioned into residential care within the prior 2 years. Themes constructed from these interviews indicated that sleep was linked to earlier life course patterns as well as to significant moments of transition in the caregiving journey. As dementia progressed, carers' sleep progressively worsened in relation to the less predictable nature of dementia-symptoms, difficulty maintaining routines, and constant responsibilities creating a state of high alert. Carers attempted to facilitate better sleep and wellbeing for their family member, often sacrificing their own self-care. Around the care transition period, some cares reported not realising how sleep deprived they were; for others the busy momentum continued. After the transition, many carers acknowledged that they were exhausted, although many had not realised this while providing home-based care. Post-transition, many carers reported ongoing sleep disruptions associated with poor sleep habits established whilst caring, insomnia or nightmares and grief. Carers were optimistic that their sleep would improve with time and many were enjoying sleeping according to their own preferences. The sleep experience of family carers is unique and includes tensions between their essential need for sleep and the experience of care as self-sacrifice. Findings have implications for timely support and interventions for families living with dementia. [ABSTRACT FROM AUTHOR]

Background and aims: Dementia is recognized globally as a massive burden on public health and wider society. It is a major cause of disability and mortality amongst older people. China has the largest population of people with dementia worldwide, accounting for approximately 25% of the entire global population of people with dementia. The study investigated the perceived experiences of care giving and care receiving in China, with one area identified in the data concerning the extent to which the participants discussed death. The research also explored the meaning of living with dementia in modern China, where the economy, demography and culture are rapidly changing. Method: The qualitative approach of interpretative phenomenological analysis was used for this study. Semi-structured interviews were used for data collection. Finding: The paper reports on one specific finding concerning death as a way out of the situation that participants found themselves in. Conclusion: The study described and interpreted one of the specific issues, 'death', in the participants' narratives. This finding reflects how psychological and social factors, such as stress, social support, healthcare cost, caring burden and medical practice have created the participants' thoughts of 'wishing to die' and the reasons why they believe 'death is a way to reduce burden'. It calls for an understanding, supportive social environment and a reconsideration of a culturally and economically appropriate family-based care system. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this investigation was to understand the dynamics among dementia caregiving, vigilance, and home and community-based service use. Methods: This paper is derived from a larger, mixed-methods study on caregiving. We used a descriptive qualitative approach to analyze interview data of 30 family caregivers of relatives with dementia. Results: We found five domains of vigilance in which caregivers felt "on duty": ensuring attentiveness, ensuring safety, ensuring resources, ensuring healthcare, and ensuring closeness. Formal service use did not necessarily give caregivers relief from vigilance, with the language of risk often employed by caregivers. Conclusion: Because service use could contribute to feelings of vigilance, rather than give caregivers a break from a sense of watchfulness, these findings support calls for dementia-specific training for service providers. In future caregiving research, the relationship between vigilance, caregiver distress, and role captivity should be explored. [ABSTRACT FROM AUTHOR]

Aim: Many carers of individuals with dementia experience high levels of grief before and after the death of the person with dementia. This study aimed to determine the usefulness, acceptability, and relevance of an animation developed to raise awareness to grief experienced by carers of people with dementia. Methods: This research had a cross-sectional survey design. We contacted carers of people with dementia over the phone or email. Participants evaluated the animation through an online or paper-based survey. We used descriptive statistics and analysed qualitative data using thematic analysis. We required a sample of 40 carers to adequately power the study with a target of 75% of carers finding the animation useful, acceptable, and relevant. Results: 31/78 carers approached evaluated the animation. Ninety-four percent of participants found the animation relevant to their situation, meeting our target. However, we fell short of this target for usefulness (68%) and acceptability (73%). The qualitative responses suggested that participants felt the animation could help improve the understanding of grief among carers, family, friends, and healthcare professionals. Carers also shared that the animation would be most useful for carers of newly diagnosed people with dementia. Conclusion: Most carers of people with dementia in this study reported that the animation was useful, acceptable, and relevant. Dissemination of the resource may be useful for the majority of carers, with the caveat that a few carers may find it distressing and need to be referred for further support. [ABSTRACT FROM AUTHOR]

Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country ; (2) Longing for a place for me and us ; (3) Being a carer first and a person second ; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being. [ABSTRACT FROM AUTHOR]

Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated. Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children). Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers. Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed. [ABSTRACT FROM AUTHOR]

This study aims to explore the change of intimate relationship between people with Alzheimer's disease and their adult child caregivers as the disease progresses. Twelve adult child caregivers were recruited through purposive sampling. Explanatory phenomenological analysis was conducted to analyse data collected by semi-structured in-depth interviews. This study found a dynamically changing relationship between adult child caregivers and their parents with Alzheimer's disease during care giving that evolved with the progress of the disease. The relationship was the most intimate in the middle stage of the disease for most caregivers and a new reciprocal relationship developed due to caregiving. Caregivers experienced different degrees of self-growth when providing care, though caregiver burdens were common. The positive experience and perception of caregivers were important for improving the quality of life for adult child caregivers of people with Alzheimer's disease. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs. [ABSTRACT FROM AUTHOR]

Previous literature reveals a high prevalence of grief in dementia caregivers before physical death of the person with dementia that is associated with stress, burden, and depression. To date, theoretical models and therapeutic interventions with grief in caregivers have not adequately considered the grief process, but instead have focused on grief as a symptom that manifests within the process of caregiving. The Dementia Grief Model explicates the unique process of pre-death grief in dementia caregivers. In this paper we introduce the Dementia Grief Model, describe the unique characteristics of dementia grief, and present the psychological states associated with the process of dementia grief. The model explicates an iterative grief process involving three states—separation, liminality, and re-emergence—each with a dynamic mechanism that facilitates or hinders movement through the dementia grief process. Finally, we offer potential applied research questions informed by the model. [ABSTRACT FROM AUTHOR]

An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies’ objectives and recommendations. Three focus groups comprising carers and people with dementia (n = 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom. [ABSTRACT FROM AUTHOR]

The focus of this paper is the experiences and needs of family carers of people with end-stage dementia. The project involved in-depth, qualitative interviews with 15 carers. The major themes emerging from the accounts of participants’ experiences were: getting support; having to trust others with care; managing the loneliness of being a carer; witnessing a loved one fade away; anticipating and experiencing death; and re-establishing life after the funeral. Carers expressed a range of instrumental and psychosocial needs. The study has provided a more personal account of the caring experience than much of the related literature. It has emphasized the need of carers for genuine understanding and connection — from family and friends as well as healthcare staff. The study highlights the amount of support carers can provide to each other through support groups and associated friendships, and stresses the importance of healthcare staff acknowledging and respecting this capacity of carers. [ABSTRACT FROM PUBLISHER]

Background and objectives: Resilience – the ability to bounce back after a stressor - is a core component of successful family caregiving for people living with dementia. In this manuscript, we describe the preliminary empirical validation of a new behavioral framework developed from existing literature for assessing care partner resilience, CP-R, and propose its potential value for future research and clinical care. Methods: We selected 27 dementia care partners who reported significant challenges prompted by a recent health crisis of their care recipient from three local university-affiliated hospitals in the United States. We conducted semi-structured interviews to elicit care partners' accounts of what they did to address those challenges that helped them recover during and after the crisis. Interviews were transcribed verbatim and analyzed using abductive thematic analysis. Findings: When persons with dementia experienced health crises, care partners described various challenges in managing new and often complex health and care needs, navigating informal and formal care systems, balancing care responsibilities with other needs, and managing difficult emotions. We identified five resilience-related behavioral domains, including problem-response (problem-solving, -distancing, -accepting, and -observing), help-related (help-seeking, -receiving, and -disengaging), self-growth (self-care activities, spiritual-related activities, and developing and maintaining meaningful relationships), compassion-related (self-sacrifice and relational compassion behaviors), and learning-related (learning from others and reflecting). Discussions and implications: Findings support and expand the multidimensional CP-R behavior framework for understanding dementia care partner resilience. CP-R could guide the systematic measurement of dementia care partners' resilience-related behaviors, support individual tailoring of behavioral care plans, and inform the development of resilience-enhancing interventions. [ABSTRACT FROM AUTHOR]

The prevalence of dementia is growing as the population and longevity increase. Caregivers of adults with dementia report stress and fatigue and often neglect their health. They also indicate the need for information to address health-related issues, including nutritional problems, of their family members with dementia (FMWD). This study examined the impact of coaching to improve family caregiver (FCG) stress and well-being and to increase the protein intake of both FCGs and their FMWD. All participants received nutrition education including a protein prescription (1.2 g/kg body weight/day) and FCGs received stress-reduction materials. Coached-group randomized participants also received weekly diet coaching and stress-reduction coaching. At baseline and 8 weeks, anthropometrics, a mini-nutritional assessment questionnaire, and diet (protein intake) were assessed in FCGs and FMWD; well-being, fatigue and strain were assessed in FCGs. Repeated two words measures analysis of variance and Fisher's exact tests examined within group and intervention effects. Twenty-five FCGs (13 coached group, 12 not-coached group) and 23 FMWD (12 coached group, 11 not-coached group) completed the study. No significant differences were found between coached and not-coached FCGs and FMWD at baseline. After 8- weeks, FCGs' protein intake significantly increased from 1.00 ± 0.17 to 1.35 ± 0.23 g/kg/body weight in the coached group and from 0.91 ± 0.19 to 1.01 ± 0.33 g/kg/body weight in the not-coached group; there was also an intervention effect (p=.01, η2 =.24). The percentage of FCGs with baseline protein intake less than prescription guidelines and with an end-of-study protein intake meeting/exceeding the prescription significantly differed, with 60% of coached FCGs versus 10% of not coached FCGs meeting the prescription. No intervention effects were shown for protein intake in FMWD or for well-being, fatigue or strain among FCGs. Diet coaching with nutrition education successfully assisted FCGs with improving their protein intake versus nutrition education alone. [ABSTRACT FROM AUTHOR]

Alzheimer's disease and related dementias are prevalent, highly impactful, and feared diagnoses. A mixed methods study using semi-structured interviews was conducted to clarify causes of dementia-related anxiety. Fifty community-dwelling adults aged 58 to 89 (M = 70.92, SD = 6.08) were recruited from a university participant registry and Memory Clinic; none had dementia diagnoses. Analyses revealed that 42% (n = 21) of participants anticipated suicidal or death ideation if diagnosed with dementia. Among participants endorsing anticipated suicidal or death ideation, responses ranged from active, specific plans, including interest in physician-assisted suicide, to more passive wishes to hasten death rather than continue to live with dementia. Within reports of both anticipated suicidal and death ideation, three subthemes emerged. Participants reported concerns about becoming a burden to others, the devaluation of life/loss of self with dementia, and the desire for (and anticipated thwarting of) personal control as factors contributing to their anticipated responses to a dementia diagnosis. Statements of anticipated suicidal and death ideation were contingent on a dementia diagnosis and may reflect errors in affective forecasting. Nevertheless, given the prevalence of dementias and older adults' elevated rates of suicide, the intersection of these two public health issues warrants greater attention. [ABSTRACT FROM AUTHOR]

Objectives: Engaging with finances has become increasingly digitalised in recent years, particularly since the COVID-19 pandemic, yet it is unknown how finance management has been affected in people living with dementia. The aim of this qualitative study was therefore to explore how digitalisation and the recent pandemic have affected finance management skills in people with dementia. Methods: Semi-structured interviews were conducted remotely with people with dementia and unpaid carers living in the UK via phone or Zoom between February and May 2022. Transcripts were coded by one of four different research team members, including two unpaid carers who were public advisers on the project. Data were analysed using inductive thematic analysis. Results: Thirty carers and people with dementia participated, and five overarching themes were identified. Managing finances has been both simplified and made more complicated by digitalising how money is spent and managed, with people with dementia and unpaid carers reporting advantages of using direct debits and debit cards, as well as digital illiteracy barriers for older relatives with dementia. Unpaid carers have received no support in managing their relative's finances, and were found to be burdened by the additional caring duties. Conclusions: Carers need to be supported in managing their relative's finances as well as with their general well-being due to taking on additional caring duties. Digital systems for finance management need to be user-friendly for people with cognitive impairment, with a need for digital literacy training for middle-aged and older adults to avoid difficulties if they develop dementia, and improved access to a computer/tablet/smart phone. [ABSTRACT FROM AUTHOR]

Background: People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard. Methods: Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances. Findings: Participants' lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions. Conclusion: People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs. [ABSTRACT FROM AUTHOR]

Background: Home-based dementia care is common in the Chinese-Australian community. However, dementia education programs for Chinese-Australians in the language of their choice are scarce. The World Health Organization has developed iSupport for Dementia, an online education program for informal caregivers. Cultural adaptation of the program for Chinese-Australian caregivers is an opportunity to address this gap in caregiver support. Aim: The aims of the study were (1) to understand stakeholders' perspectives on the cultural and linguistic appropriateness of the Chinese iSupport for Dementia content and design and (2) to explore factors affecting the future implementation of the Chinese iSupport program in Australia. Methods: A qualitative descriptive design was applied to address the aims of the study. Focus group discussions with Chinese-Australian caregivers and community aged care workers were conducted to collect data. Thematic analysis was used to analyse data. Results: In total, six focus groups were conducted with 18 Chinese-Australian caregivers and 17 care workers. Six themes were identified and described as follows: (1) appropriateness of the Chinese iSupport content; (2) acceptability of the online Chinese iSupport design; (3) motivations to engage in the iSupport program; (4) desire to interact with peers and professional facilitators; (5) concerns about program accessibility; and (6) the need to extend the iSupport program to care workers. Conclusions: Engagement with Chinese-Australian caregivers and care workers will inform further revisions of the Chinese iSupport program contents to ensure the program is culturally congruent to Chinese-Australian caregivers. Factors affecting the implementation of the program identified in the study will be considered in the intervention phase of the program. [ABSTRACT FROM AUTHOR]

Purpose: We examine care partners' experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia. The goal of the study was to understand 1. the unique dementia-related needs of Black care partners and barriers and challenges to caregiving experienced within the Black community, 2. perceived benefits of the MIND program, and 3. ways to improve the program and make it more culturally responsive to the Black community. Method: We conducted three focus groups totaling 20 care partners of people living with dementia; who participated in the MIND intervention (2014–2019); all Black/African American and English speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using inductive approaches. Findings: Participants noted three overarching themes related to dementia care needs and challenges in the Black community: difficulty finding and accessing dementia information and relevant services and supports; familial conflict/lack of sibling and familial support; and lack of effective communication about dementia within Black Communities. Regarding MIND at home program benefits, four themes emerged: 1. perceived to help locate resources (formal and informal); 2. provided care partners an opportunity for socialization and interaction; 3. included comprehensive assessments and helpful linked information; and 4. resulted in a "much needed break for care partners." Increased diversity of the MIND program personnel, greater clarity and consistency in MIND program promotion, and better communications were themes for how the program could be improved. Conclusion: Care partners participating in the MIND program perceived common benefits in aspects related to care for the persons living with dementia as well as benefits to themselves, believed the program addressed important challenges and gaps in education, services, and social support, and could be enhanced in its delivery and cultural responsiveness. [ABSTRACT FROM AUTHOR]

Background: A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers' quality of life. Objective: To explore stakeholders' perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. Method: Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. Results: The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. Conclusion: Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member's dementia advances. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to explore the stressors along with coping strategies in Chinese family caregivers whose relative with dementia had been placed into a long-term care facility. Methods: A qualitative descriptive study was conducted with 17 Chinese family caregivers of institutionalised older adults with dementia, recruited via purposeful sampling. Information regarding stressors along with coping strategies was collected through face-to-face semi-structured individual interviews. The interviews were audio-recorded, transcribed, anonymised and imported into MAXQDA 2018.2. Data were analysed with qualitative content analysis. Findings: Three categories of stressors emerged: socioeconomic pressure, hassles arising from continuing caregiving and suboptimal care provided by the facility. In particular, the family caregivers' experienced tremendous pressure of negative comments from people around since long-term care placement was traditionally viewed as unfilial in Chinese societies. Various coping strategies were adopted by Chinese family caregivers to deal with the stressors; however, they were not always adaptive. Implications: Health care authorities and professionals should recognise family caregivers' stressors after long-term care placement of a relative with dementia with the consideration of the unique socio-cultural needs. Appropriate and effective interventions should be developed and implemented to facilitate family caregivers to cope with stressful situations after long-term care placement and further to safeguard their psychosocial well-being. [ABSTRACT FROM AUTHOR]

Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care—from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias. [ABSTRACT FROM AUTHOR]

Introduction: Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers' guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method: Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers' guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (β = −0.10; p < 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01). Discussion: More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes. [ABSTRACT FROM AUTHOR]

Much of the research exploring the experiences of family caregivers of people with dementia has focussed on spouses and adult children. It is hypothesised that other family members at different life stages and with different family roles may experience and perceive the caregiving role differently. The objective of the current review was to explore the experiences of grandchildren who provide care to a grandparent with dementia. A systematic search of four databases identified 12 studies which met the inclusion criteria. An assessment of quality was completed for each of the included studies. Grandchildren described dementia-related changes, changes to their role and relationship with their grandparent, multiple impacts of caregiving, influences of other family relationships on caregiving and positive aspects of caregiving. Many of the included studies met most of the quality criteria for the respective methodological design; however, there was some variation in quality and sample across included studies. The review indicates that assessments and interventions to incorporate grandchildren and the wider family system may help to support family carers to continue to provide care for grandparents with dementia. The research and clinical implications and limitations of the review are also considered. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background and aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden. Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief. Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge : Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden : Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates. Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health. [ABSTRACT FROM AUTHOR]

More than 15 million Americans are providing care for a family member with Alzheimer's disease. Family caregivers are faced with highly stressful experiences, using strong coping skills, and implementing critical decisions with little or no knowledge or information and with virtually no preparation or assistance. The need for research efforts to focus on caregiver stress, coping mechanisms, and informed decision-making skills spearheaded a theoretical framework to study the potential relationships between family caregivers' types of stress, coping skills, and their decision-making efforts. Constructs of life event stress, role strain, self-concept stress, and coping stress were examined relative to 10 priority areas of decision-making identified by the national Alzheimer's Association. A relational non-experimental research design was utilized. Caregivers completed four Likert-scale instruments with data analyzed using descriptive statistics and rank-order correlation procedures. Findings indicated varying levels of stress, strong family self-efficacy and high levels of coping skills contribute to critical decision-making. [ABSTRACT FROM AUTHOR]

In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer's Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer's Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer's Disease permeates the caregivers' experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer's Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested. [ABSTRACT FROM AUTHOR]

The use of quantitative self-report methods for assessing the stress associated with dementia caregiving, especially among minority groups, has been lately criticized. The aim of this study was to examine whether Human Figures Drawings might provide a tool for assessing caregivers' burden. Sixty Israeli Arabs – 30 family caregivers of a person with dementia and 30 gender and age-matched non-caregivers – were asked to draw a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability. While no differences were found between the drawings of caregivers and non-caregivers, statistically significant differences were found between all the characteristics of the drawings depicting a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability, as drawn by caregivers. Several of the drawings' characteristics were significantly associated with caregiver burden. By introducing a nonverbal form of expression, Human Figures Drawings might add utility to the assessment of dementia caregivers' burden. [ABSTRACT FROM AUTHOR]

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care. [ABSTRACT FROM AUTHOR]

Background and objectives: Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers' approaches for handling these behaviors have implications for both care partners' well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers' strategies for managing behavioral and psychological symptoms of dementia. Design: As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results: Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion: Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers' own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being. [ABSTRACT FROM AUTHOR]

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p <.01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being. [ABSTRACT FROM AUTHOR]

A Visual Arts Education program was tested among 26 pairs of persons with dementia and their caregivers. Pairs were randomized to Visual Arts Education or control groups, and each group met once per week for two months (8 weeks) to participate in activities with a trained arts instructor. Groups were assessed at baseline, two months, and six months. The Visual Arts Education group received instruction and produced a different type of artistic work each week. The pedagogical strategy was designed so that each activity was increasingly novel, challenging, and complex. The control group viewed slide shows, participated in discussions about art, and made paintings. At the six-month follow-up, significant improvements in caregiver burden and self-esteem for the persons with dementia were found in the Visual Arts Education group. The Visual Arts Education pedagogical approach shows the potential for effectiveness for improving quality of life for persons with dementia and their caregivers. [ABSTRACT FROM AUTHOR]

Memory dysfunction and cognitive impairments due to Alzheimer's disease can affect the selfhood and identity of afflicted individuals, causing distress to both people with Alzheimer's disease and their caregivers. Recently, a number of case studies and clinical trials have been conducted to determine the potential of deep brain stimulation as a therapeutic modality for people with Alzheimer's disease. Some of these studies have shown that deep brain stimulation could induce flashbacks and stabilize or even improve memory. However, deep brain stimulation itself has also been attributed as a potential threat to identity and selfhood, especially when procedure-related adverse events arise. We anticipate potential effects of deep brain stimulation for people with Alzheimer's disease on selfhood, reconciling information from medical reports, psychological, and sociological investigations on the impacts of deep brain stimulation or Alzheimer's disease on selfhood. A tripartite model of the self that extends the scope of Rom Harré's and Steve Sabat's social constructionist framework was used. In this model, potential effects of deep brain stimulation for Alzheimer's disease on Self 1 or singularity through use of first-person indexicals, and gestures of self-reference, attribution, and recognition; Self 2 or past and present attributes, knowledge of these characteristics, and continuity of narrative identity; and Self 3 or the relational and social self are explored. The ethical implications of potential effects of deep brain stimulation for Alzheimer's disease on the tripartite self are then highlighted, focusing on adapting informed consent procedures and care provided throughout the trial to account for both positive and negative plausible effects on Self 1, Self 2, and Self 3. [ABSTRACT FROM AUTHOR]

Background: There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim: The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals' views and current practice regarding people with dementia and their interactions with informal caregivers. Method: We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results: We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers' model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers' needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions: Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable. [ABSTRACT FROM AUTHOR]

In order to optimize the treatment in wards for patients with dementia, we investigated predictors of the length of stay in the ward for patients with dementia. A prospective analysis of 72 patients with dementia was conducted in two wards for patients with dementia. Severity of dementia was assessed by the Clinical Dementia Rating, basic activities of daily living were evaluated using the Physical Self-Maintenance Scale, and severity of behavioral and psychological symptoms of dementia and caregiver distress were determined with the Nursing Home version of the Neuropsychiatric Inventory. Stepwise regression analysis was used to identify predictors of the length of stay. Fewer patients were discharged to home compared to those discharged to institutions or transferred to a different hospital or ward. The mean length of stay was 92.0 days. Clinical Dementia Rating and total distress scale score on the Nursing Home version of the Neuropsychiatric Inventory were significant independent predictors of the length of stay. The total Nursing Home version of the Neuropsychiatric Inventory score and total distress scale score on the Nursing Home version of the Neuropsychiatric Inventory were significantly improved through treatment. Our results suggest that treatment in the wards for patients with dementia is effective for improvement of behavioral and psychological symptoms of dementia. However, some patients could not be discharged to their home despite improvement of behavioral and psychological symptoms of dementia, and this may be related to caregiver burden at admission. [ABSTRACT FROM AUTHOR]

This study evaluated discharge documentation for people with dementia who were discharged home, against expected discharge criteria and determined relationships between compliance scores and outcomes. This cross-sectional study audited discharge documentation and conducted a post discharge survey of carers. There were 73 eligible discharges and clinically significant documentation deficits for people with dementia included: risk assessments of confusion (48%), falls and pressure injury (56%); provision of medication dose-decision aids (53%), provision of contact information for patient support groups (6%) and advance care planning (9%). There was no significant relationship between compliance scores and outcomes. Carer strain was reported to be high for many carers. People with dementia and their carers are more vulnerable and at higher risk of poor outcomes after discharge. There are opportunities for improved provision of medications and risk assessment for people with dementia, provision of information for patient support groups and advanced care planning. [ABSTRACT FROM AUTHOR]

Older family carers of people with dementia represent an increasing but overlooked population of family carers. This research aimed to explore how these individuals make sense of their own quality of life and to identify the factors that enhance or compromise this. Four focus groups were conducted in 2014 with 19 older family carers in community-based support groups in Nottinghamshire, United Kingdom. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Thirty-three subthemes emerged and were collated into three superordinate themes: 1) aspects of care and caregiving, 2) feelings and concerns, and 3) satisfaction with life and caregiving. This study identified a broad range of aspects that are of particular importance to the quality of life of older family carers of people with dementia. These findings are expected to inform future research as well as health and social care providers with the aim of improving life quality for this population. [ABSTRACT FROM AUTHOR]

Background The qualitative research on young onset dementia is providing insights about the 'lived experience' of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers. Method The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles. Results In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the post-diagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver–patient relationship. Both can experience grief, isolation, and stigma. Discussion The diagnosis of dementia elicits significant changes in thinking, emotion, and lifestyle that patients and caregivers are unlikely to be ready for. Both receive insufficient support or guidance in particular of a psychological nature on how to cope and adjust. [ABSTRACT FROM AUTHOR]

Most studies that enroll individuals with dementia require a study partner for each participant. Study partners--usually family members--perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study's success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks--often within the context of being a caregiver--that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address. [ABSTRACT FROM AUTHOR]

Objective Peer support for people with dementia and carers is routinely advocated in national strategies and policy as a post-diagnostic intervention. However there is limited evidence to demonstrate the value these groups offer. This study looked at three dementia peer support groups in South London to evaluate what outcomes they produce and how much social value they create in relation to the cost of investment. Methods A Social Return on Investment (SROI) analysis was undertaken, which involves collecting data on the inputs, outputs and outcomes of an intervention, which are put into a formula, the end result being a SROI ratio showing how much social value is created per £1 of investment. Results Findings showed the three groups created social value ranging from £1.17 to £5.18 for every pound (£) of investment, dependent on the design and structure of the group. Key outcomes for people with dementia were mental stimulation and a reduction in loneliness and isolation. Carers reported a reduction in stress and burden of care. Volunteers cited an increased knowledge of dementia. Conclusions This study has shown that peer groups for people with dementia produce a social value greater than the cost of investment which provides encouraging evidence for those looking to commission, invest, set up or evaluate peer support groups for people with dementia and carers. Beyond the SROI ratio, this study has shown these groups create beneficial outcomes not only for the group members but also more widely for their carers and the group volunteers. [ABSTRACT FROM AUTHOR]

This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile. [ABSTRACT FROM AUTHOR]

One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient’s move into residential care or death) will affect caregivers’ outcomes. A synthetic cohort method compared caregivers’ stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing. [ABSTRACT FROM AUTHOR]

Dementia is a global health issue and the effects on caregivers are substantial. The study aimed to examine the associations of burden, coping, self-efficacy with quality of life among family caregivers of persons with dementia in Singapore. Structured interviews were conducted in a convenience sample of 84 family caregivers caring and seeking clinical care for the persons with dementia in an outpatient clinic of a public hospital in Singapore. The outcome measures included the Family Burden Interview Schedule, Family Crisis Oriented Personal Evaluation Scale, General Perceived Self-Efficacy Scale, and World Health Organization Quality of Life Scale – Brief Version. In general, significant correlations were observed between the quality of life scores with coping strategy and family burden scores, but not between the coping strategy and family burden scores. Compared to demographic factors such as caregiver age and household income, psychosocial factors including family burden, coping strategies, and self-efficacy demonstrated greater association with quality of life in the participants. However, the dynamics of these associations will change with an increasing population of persons with dementia, decreasing nuclear family size, and predicted changes in family living arrangements for the persons with dementia in future. As such, it necessitates continuous study examining the needs and concerns of family caregivers and the relevance of ongoing interventions specific to caregivers of persons with dementia. [ABSTRACT FROM AUTHOR]

Alzheimer’s caregiving literature acknowledges dressing as a major daily stressor but research on this topic is negligible. A qualitative grounded theory approach was used to explore Alzheimer’s family caregivers’ perspectives about issues that arise when their family members lose the ability to dress independently. Three focus groups and seven individual interviews were conducted and audio recorded with 25 information rich caregivers. Constant comparative analyses and coding of the transcripts identified six major themes leading to a ‘Preservation of Self Model: Care Recipient to Care Giver’ that portrays the caregiving trajectory. Initially, caregivers tried to protect the self dignity of the family member by maintaining usual routines and absorbing blame for difficulties. Dressing ‘battles’ occurred and caregivers learned management through trial and error. Crossing adult–child-gender role boundaries escalated discomfort. When facing unrelenting demands, concern shifted to preservation of the caregivers’ health and self. Results suggest that caregivers would benefit from more pro-active dressing counseling to shorten the trial and error periods, dressing aids more relevant to dementia and more knowledgeable helpers. The preservation model can facilitate understanding of the caregiving trajectory and guide intervention support. [ABSTRACT FROM AUTHOR]