Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Informal Caregivers and Psychosocial Support: Analysis of European Dementia Policy Documents

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Determinants of caregiver burden among informal caregivers looking after older adults with Alzheimer\u27s disease in Saudi Arabia.

Caregiver burden in Alzheimer’s Disease (AD) is a significant factor in the deterioration of caregivers’ physical and mental health. Moreover, increased caregiver burden has been associated with the decline in quality of life and the reduced quality of care for the care recipient. However, the level of caregiver burden perceived by informal caregivers of care recipients with AD can be varied with the impact of different factors related to the caregiver, care recipient, and caregiving process. Identifying factors associated with caregiver burden and exploring factors that account for variation in caregiver burden are vital to prevent adverse outcomes of caregiver burden affecting caregivers and care recipients. However, no Saudi studies have identified factors associated with caregiver burden. Additionally, no studies have explored factors that account for variation in caregiver burden in AD among informal caregivers in Arabic countries, specifically in Saudi Arabia. The purpose of this dissertation was 1) to examine the association between particular factors (i.e., care recipient’s age and caregiver’s educational level) and caregiver burden and 2) to explore the ability of contextual variables (Socio-demographic factors of care recipients, Socio-demographic factors of caregivers, and caregiving-related factors), primary stressors (i.e., care recipient stage of Alzheimer’s), and caregiver’s well-being to account for variation in caregiver burden among a sample of Saudi Arabian informal caregivers caring for older adults with AD. Using the existing literature and the modified stress process model of Conde-Sala et al. (2010) as a conceptual framework, this non-experimental research project leveraged primary data collected via a survey of caregivers of older adults with Alzheimer’s in Saudi Arabia. The sample included 182 individuals who completed self-reported online surveys distributed by the Saudi Alzheimer’s Disease Association. The data were analyzed using SPSS version 28.0.1. Pearson’s product moment correlation coefficient (r), Point biserial correlation coefficients, and hierarchical multiple linear regression analysis were used to answer the research questions. Caregivers were more likely to experience a higher burden with older male care recipients with severe AD who had fewer years of formal education. Older female caregivers who were married, lived with the care recipient, daughter, had fewer years of formal education, were employed, had low monthly income, provided more hours of care per week, and were unsatisfied with the formal care for care recipients were more likely to experience a greater burden. All four sets of predictors related to contextual variables (care recipient socio-demographic factors, caregiver socio-demographic factors, caregiving-related factors), primary stressor (care recipient stage of Alzheimer’s), and caregiver well-being accounted significantly for variance in caregiver burden. In particular, care recipient factors, which included care recipient socio-demographic factors (age and educational level), and the primary stressor (care recipient stage of Alzheimer’s) were the largest in effect, accounting approximately for 53% of the variation in caregiver burden, followed by caregiver socio-demographic factors (age, educational level, marital status, employment status, monthly income level, and living with the care recipient), caregiving-related factors (hours of care per week and caregiver’s perception of formal care for care recipient), and caregiver well-being, each of which accounted for 21%, 3%, and 2%, respectively of the variation in caregiver burden. The significant individual variable that accounted for the most variance among care recipient factors was the care recipient\u27s age. Among caregiver socio-demographic factors, spousal relationship (being married to the care recipient) represented a more critical individual determinant of caregiver burden than other factors. An increased total number of caregiving hours was identified as a more burdensome individual variable among caregiving-related factors than the caregiver\u27s negative perception of formal care for the care recipient. Decreased caregiver well-being was a significant factor that accounted for increased caregiver burden. All contextual variables explored in this research, identified as predictors in the modified stress process model of Conde-Sala et al. (2010), accounted significantly for the variation in caregiver burden except the caregiver\u27s age, educational level, and living with the care recipient. The primary stressor (care recipient stage of Alzheimer\u27s) did not significantly account for the variance in caregiver burden in this research. These findings aligned with the prediction of Conde-Sala et al. (2010) that caregivers-associated variables have more decisive influence on caregiver burden than the primary stressors. The contribution of this study is a critical extension of existing worldwide knowledge. The finding of this research should be used as scientific evidence of the need to frame health-related policies to assist Saudi caregivers of persons with AD in obtaining more professional help and support to minimize the probability of experiencing an increased burden. Saudi policy makers, healthcare professionals, professional social workers, educators, and researchers should collaborate to improve the informal and formal care provided to the care recipient, which may enhance the quality of life of caregivers and the quality of care for the care recipient. The inclusion of AD in the Saudi Vision 2030, the establishment of Alzheimer\u27s long-term care facilities and Alzheimer\u27s elderly day centers, and international collaboration among governmental and non-governmental institutions are critical steps to address the gap in care and services for this particular population

Comparison of Caregiver Burden among Types and Stages of Dementia

The purpose of this study was to better understand the effects of caregiver burden as they relate to different dementia diagnoses and the stage of the disease in order to discover appropriate supports and interventions. Potential participants were identified through their use of a specialty memory loss clinic. Using a mixed methodology, respondents completed a survey which included a quantitative measure and qualitative open ended response questions designed to allow the caregiver to expand on their experience. The quantitative portion of this research used the Zarit Burden Interview (ZBI), a caregiver self-report measure. Diagnosis information and the patient’s Allen Cognitive Level (ACL) were supplied by the clinic in order to confirm appropriate diagnosis and stage of disease. Moderate ACL scores of 3.5-4.5 appear to increase burden. Caregiving daughters in this study were found to have the highest total ZBI scores, indicative of a higher level of burden than other caregivers. Husbands and wives in this study had identical mean total ZBI scores. The findings indicated several areas of caregiver burden in which social work supports could be valuable. Role transitions, isolation, a lack of social support, and the need for adult day centers equipped to handle patients with dementia related behaviors were all identified as areas of concern

Comparison of Caregiver Burden among Types and Stages of Dementia

The purpose of this study was to better understand the effects of caregiver burden as they relate to different dementia diagnoses and the stage of the disease in order to discover appropriate supports and interventions. Potential participants were identified through their use of a specialty memory loss clinic. Using a mixed methodology, respondents completed a survey which included a quantitative measure and qualitative open ended response questions designed to allow the caregiver to expand on their experience. The quantitative portion of this research used the Zarit Burden Interview (ZBI), a caregiver self-report measure. Diagnosis information and the patient’s Allen Cognitive Level (ACL) were supplied by the clinic in order to confirm appropriate diagnosis and stage of disease. Moderate ACL scores of 3.5-4.5 appear to increase burden. Caregiving daughters in this study were found to have the highest total ZBI scores, indicative of a higher level of burden than other caregivers. Husbands and wives in this study had identical mean total ZBI scores. The findings indicated several areas of caregiver burden in which social work supports could be valuable. Role transitions, isolation, a lack of social support, and the need for adult day centers equipped to handle patients with dementia related behaviors were all identified as areas of concern

Dementia survey among Attendees of a Dementia Awareness Event in Karachi, Pakistan

There is little information available about peoples\u27knowledgeregarding symptoms of dementia, dementia diagnosis, and care arrangementsfor dementia patients in Pakistan. Aims: We aimed to find out if patients with dementia and their caregivers were aware of diagnosis, the most common and most distressing symptoms, and care arrangement for these patients

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Assistive technologies to address capabilities of people with dementia: from research to practice

Assistive technologies (AT) became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyse how AT can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where AT can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past fifteen years (2000-2015), discusses current issues in the design, development and economic model of AT for people with dementia, and covers how these technologies are being used and assessed

Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Calleja, P ORCiD: 0000-0001-5674-1404Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking. Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families. Design: A qualitative descriptive exploratory study. Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed. Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource. Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application. Relevance to clinical practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs. © 2019 John Wiley & Sons Lt