Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.
Methods: Through an anonymous telephone survey with the North American Research Committee on Multiple Sclerosis (NARCOMS), we administered the validated Scale to Report Emotional Stress Signs - Multiple Sclerosis (STRESS-MS) and other study measures to 206 U.S. adults who had unpaid caregivers because of MS-related disability.
Results: 54.9% of respondents disclosed undergoing some form of mistreatment since first requiring caregiving by a family member or friend, including psychological abuse (44.2%), financial abuse (25.2%), neglect (16.5%), physical abuse (11.2%) or sexual abuse (8.3%). Many had experienced multiple forms of mistreatment. Mistreated respondents reported less social support, more alcohol use, and higher levels of fatigue and cognitive impairment. Daily caregiving increased mistreatment risk. Caregivers with mental illness were 13 times more likely to be abusive or neglectful. Poor premorbid relationships with caregivers nearly tripled mistreatment risk, while any significant alcohol use history by people with MS or caregivers doubled risk.
Conclusions: In a nationwide survey, over 50% of American adults with advanced MS reported mistreatment by caregivers.
This review on recognizing and responding to suspected maltreatment of children with medical complexity is organized around several questions: 1) What is meant by the term, "children with medical complexity?" Does this term represent something distinct from "children with special health care needs," or "children who are medically fragile?" 2) What constitutes medical neglect of children with medical complexity? How can it be distinguished from expected and reasonable shortcomings in the care that can realistically be provided to a child? 3) How can health care providers recognize instances of "medical child abuse" in which the harm results from interventions that health care providers undertake in response to exaggerated or fabricated reports from parents or other family caregivers? 4) What are some of the challenges facing mandated reporters and members of the health care and case planning teams in recognizing and responding to suspected medical neglect or abuse of children with medical complexity?
Given the vulnerability of the child psychiatric population, this study examined whether parenting a child referred to a child and adolescent psychiatry department leads to a higher risk of physical child abuse and if that risk is associated with a specific child psychopathology. The clinical sample consisted of caregivers with a six-to-11-year-old child who consulted child and adolescent psychiatry for a psychiatric assessment. The Dutch Child Abuse Potential Inventory (CAPI), socio-demographic data and child psychiatric diagnosis were collected from 59 caregivers of 59 children. Ten per cent of the sample obtained an Abuse scale score indicative of a potential risk for physically maltreating their child. Compared to a non-clinical sample, this study showed a two and a half times higher risk potential for physical child abuse in caregivers with children referred to child and adolescent psychiatry. The elevated risk was not associated with a specific child psychiatric diagnosis. The caregivers at risk were more unhappy and experienced more problems with their child, their family and with others. Results support the need for implementing a standard risk assessment for physical child abuse in a child psychiatric setting.
Caregiver support is vital in improving outcomes for child sexual abuse victims; however, the disclosure can significantly affect caregivers, thus impacting their ability to meet their children's needs. To maximize the support from caregivers, their own needs following disclosure need to be met. This study investigated the impact of child sexual abuse disclosure and associated needs as identified by caregivers. Sixty needs assessment forms were collected from families who accessed a parenting support pilot program run in New Zealand. These forms were completed by nonoffending caregivers during an assessment session with their counselor and consisted of both open-ended and Likert scale questions focusing on both the needs of the child and the family. Caregivers identified a range of impacts of the disclosure on their children, themselves, and other families members and the related support that may be needed. In particular, caregivers identified that they needed support with child behavior management and with their own coping. The findings suggest that interventions with caregivers following disclosure of child sexual abuse may be a valuable adjunct to therapy provided directly to the child.
Background and Aim: Caregivers in the home environment have an important role in timely detecting and responding to abuse. The aim of this review was to provide insight into both the existing tools for the assessment of and interventions for elder abuse by formal and informal caregivers in the home environment, and to categorize them according to a public health perspective, into primary, secondary, tertiary or quaternary prevention. Methods: We selected the assessment tools and interventions that can be used by caregivers in the home environment included in previous reviews by Gallione et al (2017) and Fearing et al (2017). To identify published studies after these reviews, a search was performed using PubMed, Cochrane Database, CINAHL and Web of Science. Results: In total, fifteen assessment tools and twelve interventions were included. The number of assessment tools for elder abuse for use in the home environment is increasing; however, tools must be validated over different cultures and risk groups. In addition, the tools lack attention for the needs of vulnerable older persons such as persons with dementia. Existing interventions for caregivers in the home environment lack evidence for addressing elder abuse and do not address potential adverse effects (quaternary prevention). Conclusion: Assessment tools for elder abuse need further testing for validity and reliability for use by caregivers in the home environment. For interventions, meaningful outcome measures are needed. Important to note is that quaternary prevention requires more attention. This argues for taking into account perspectives of (abused) older persons and caregivers in the development of assessment tools and interventions protocols.
The goal of the current study was to examine the roles of communication neglect and caregiver traits (i.e., anger and hostility) in explaining caregivers' tendency to engage in abusive behaviors – specifically, whether such tendency is likely to occur in situations where caregivers perceive older care receivers displaying cognitive impairment or problem behaviors. Two hundred fifty-five informal caregivers completed an online questionnaire via Qualtrics. Treating communication neglect as the mediator, and caregiver anger and hostility as moderators, the results suggested that caregivers who perceived their older care receivers displaying problem behaviors were more likely to engage in communication neglect, which then led to psychological abuse. Moreover, the joint effects of communication neglect and caregiver anger and hostility intensified caregivers' likelihood to commit psychological abuse. These findings provide initial evidence to further investigate the importance of communication neglect and dysfunctional behaviors such as anger and hostility in explaining psychological abuse in informal caregiving for older adults.
Aim: To synthesize what is known about elder abuse and relationship factors associated with abuse between caregivers and older people with memory disorders at home. Background: Concerns about abuse in the caring relationship between older people with memory disorders and family caregivers have increased. Abuse is associated with negative outcomes on older people's health, quality of life, and zest for life. Abuse in the caring relationship manifests in financial exploitation, neglect, mistreatment, and physical issues. Design: Systematic review. Data sources: Databases including Scopus, PubMed/Medline, SveMed+, Cinalh, SonINDEX, and ProQuest were searched using keywords about abuse in the caring relationship between older people with memory disorders and family caregivers at home. Articles published between 2005-2019 were retrieved and underwent data analysis and knowledge synthesis. Review methods: The review was presented under the categories of the dyadic approach of elder abuse in connection with the role of caregiver (risk) and care recipient (vulnerability) by Fulmer et al. (2005). Results: The search process led to 12 quantitative studies, including an intervention, a prospective, nine surveys, and a cross-sectional structural interview. Findings were synthesized and presented under 'personal', 'physical and psychological', and 'social' domains indicating the bilateral roles of caregiver and care recipient leading to abuse. Conclusion: This review depicted factors influencing abuse in the caring relationship between older people with memory disorders and their family caregivers at home. They included family caregivers' psychological issues, knowledge of memory disorders and modifications, previous caring relationship, social support, number of care recipients, and care recipients' functional level. Impact: • This review identifies what influences elder abuse by family caregivers using the dyadic approach and explains how abuse can be prevented through suggested strategies. • The review findings are relevant to multidisciplinary healthcare providers and can guide the provision of support, screening and assessment, educational programs, and legislative initiatives.
Background and Objectives: The purpose of this study was to identify risk and protective factors for abusive and neglectful behavior in the context of daily caregiving. Research Design and Methods: Family caregivers who co-reside with a care recipient with Alzheimer's disease and related dementia, recruited from social media, completed 21-days of diaries. Multilevel modeling with days (n = 831) nested within caregivers (N = 50) was used to evaluate relationships between hypothesized risk and protective factors and the odds of an abusive or neglectful behavior on a given day. Results: Disruptions in the daily routine and stress of the caregiver related to behavioral symptoms of the care recipient are significant risk factors for abusive and neglectful behavior. Participating in a meaningful activity with the care recipient when it occurs twice in a day is a significant protective factor against use of a neglect behavior (OR = 0.19; CI 0.06-0.64; p =. 01), but not for abusive behavior. Hypotheses that spending the full day together would increase risk, and that receipt of instrumental support and caregiver participation in self-care would decrease risk, were not supported. Discussion and Implications: Findings demonstrate that risk of an abusive or neglectful behavior varies from day-to-day in the presence and absence of contextual factors, and that the majority of the variance in the odds an abusive or neglectful behavior occurring is related to day-level factors. Findings demonstrate that diary surveys are critical to identifying ecologically valid modifiable risk and protective factors for abusive and neglectful behaviors that can be targeted in future interventions.
Reports of elder abuse range from financial scams to incidents of family violence, with public warnings issued accordingly from the Federal Trade Commission and the American Bar Association. The Centers for Disease Control and Prevention defines elder abuse as an intentional act or failure to act by a caregiver or another person in a relationship involving an expectation of trust that causes or creates a risk of harm to an older adult. Abuse of older adults can be physical, emotional, financial, neglect, or any combination of these. The World Health Organization defines ageism as “the stereotyping, prejudice, and discrimination against people on the basis of their age,” and a recent systematic review found ageism to be associated with numerous negative health consequences worldwide. Ageism is pervasive, harmful, and arguably the primary vice underlying elder abuse. See PDF.] ACKNOWLEDGMENTS Financial Disclosure This work was supported by the National Institute on Aging at the National Institutes of Health grants (R01AG055430 to S.D.H., R01AG060096 to L.M.) and the Administration for Community Living grant (90ABRC0001‐02‐00 to L.M.), as well as the Department of Family Medicine of the University of Southern California.
Family carers affected by violent, abusive or harmful behaviour by the older person for whom they care face social and epistemic challenges in developing and sharing knowledge about their experiences. These difficulties have contributed to a situation in which there is a paucity of evidence and public discourse about how we understand violence and harm instigated by people who have care needs or are 'vulnerable'. This paper reports the findings of a qualitative study that involved 12 in‐depth interviews with female carers affected by violence, abuse or harm. The study was informed theoretically by Miranda Fricker's concept of epistemic injustice which was used as a framework for analysis. There were two principal findings: (1) Carers were sensitive to anticipatory stigma and loss of moral autonomy. As a result, they self‐censured what they shared and, at times, were met with subtle but powerful processes of silencing. (2) Carers had limited linguistic and conceptual resources to explain the emotional and social aspects of the harm they experienced, exacerbated by implicit social norms about the 'private' and gendered nature of familial care. To conclude, we discuss the implications of these findings for sociological research and health and social care practice.
Although dependency in its various forms has been widely studied, most investigations examine manifestations of dependency within individuals. Scrutiny of the literature reveals that synergistic dependencies—situations wherein both members of a dyad manifest excessive dependency of one form or another—play a role in some forms of partner and elder abuse. High levels of interpersonal or economic dependency in a woman coupled with high levels of interpersonal dependency in her male partner increase the likelihood of partner abuse. When family member caregivers are economically dependent on a functionally dependent older adult, risk for elder abuse increases. Although these synergistic dependencies differ across abuse domains, two prevailing themes emerge. The interpersonal, economic, and functional dependencies of abused partners and older adults are associated with feelings of helplessness, powerlessness, and an inability to challenge the abuser. The common dependency-related dynamic in perpetrators of abuse is fear—fear of abandonment leading to partner abuse, and fear of loss of financial support increasing risk for elder abuse.
Objectives: To identify risk and protective factors associated with elder abuse among older Chinese with cognitive and physical impairment in the People's Republic of China (PRC). Methods: 1002 dyads of care recipients and family caregivers were interviewed. Results: The mutually reported rates were 9.7%, 0.8%, 33.2%, and 39.7% for psychological abuse, physical abuse, financial exploitation, and caregiver neglect respectively. Caregiver burden, care recipient neuropsychiatric symptoms, and cognitive impairments are prominent risk factors, while protective factors associated with multiple abuse subtypes include caregiver's use of emotion-focused and solution-focused coping, perception of familism, and premorbid relationship rewards. Distinct factors were observed for respective forms of abuse. Psychological abuse with family poverty; Caregiver neglect with caregiver's substance use and poor physical health; Financial exploitation with caregiver's neurotic personality, as well as care recipient's younger age, absence of chronic illness, and co-residence between the caregiver and care recipient. Discussion: Both similar and distinct factors were observed for different forms of abuse, potentially useful for designing prevention and intervention programs.
Dementia is a neurocognitive disorder that implies a risk factor of maltreatment by family caregivers. In this study, we analyzed both informal caregiver's perceptions of maltreatment and aspects of the caregiver and caregiving behavior that may be associated with maltreatment. We conducted five focus groups (FGs) in three Spanish cities: Segovia, Soria and León. The themes that were identified were related to two levels of maltreatment: (a) relational and (b) institutional. At the relational level, we observed the justification of maltreatment of Older Adults with Dementia (OAswD) by family caregivers during the occurrence of behavioral symptoms. At the institutional level, we noted that lack of support from the government was considered a type of maltreatment. These themes suggest that policy issues related to healthcare should be considered.
One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.
Purpose Using a risk and vulnerability framework, the purpose of this paper is to describe the characteristics of older adults that Adult Protective Services (APS) substantiated for neglect by caregivers, their caregivers and the interrelationships between them. Design/methodology/approach The paper uses a qualitative study of 21 APS case record narratives using a template analysis. Findings Neglect related to withholding or refusing medical care was the most common. The older adults had multiple health conditions and geriatric syndromes. Caregivers had difficulties in carrying out caregiving role due to health and mental health issues, work responsibilities and lack of insight into older adults’ needs. The refusal to access or accept services by both the older adults and the caregivers was a predominant theme. Research limitations/implications The sample size was small, limited to one geographical area, and non-representative of all neglect cases. The data were extracted from written case narratives and not directly from the older adults and their family members. Case records varied in the case detail provided. Practical implications To protect vulnerable older adults and improve quality of life, APS involvement in cases of caregiver neglect needs strategies to get people to accept help and access services to address multiple health and psychosocial problems for both older adult victims and their caregivers. Originality/value This study provides in-depth information on APS cases involving caregiver neglect that add to understanding of this complex problem and points to areas for further study.
Background: Potentially harmful behaviour (PHB) by caregivers is detrimental to the physical and psychological well‐being of care recipients. In Japan, few studies have investigated caregivers’ PHB towards dementia patients. This study examined PHB in family caregivers of dementia patients with behavioural and psychological symptoms of dementia (BPSD) and identified factors related to PHB. Methods: Following primary consultations at an elderly psychiatric patient department, we enrolled 133 pairs of dementia patients and their family caregivers. We assessed PHB using the Japanese version of the modified Conflict Tactics Scale. We defined the presence of PHB as two or more points (PHB frequency of ‘sometimes’ or more) on at least one indicator of the modified Conflict Tactics Scale. We investigated the prevalence of PHB in relation to the clinical characteristics of the patients and their family caregivers. We evaluated BPSD using the Neuropsychiatric Inventory and caregiver burden using the eight‐item Japanese version of the Zarit Caregiver Burden Interview. Results: Of the family caregivers, 48.9% showed PHB. Multivariate analysis identified the following association with PHB: caregiver's Zarit Caregiver Burden Interview total score (odds ratio [OR], 1.09 per unit increase; 95% confidence interval [95%CI], 1.02–1.16), and Neuropsychiatric Inventory scores for patient irritability (OR, 1.22 per unit increase; 95%CI, 1.06–1.40), appetite/eating disorders (OR, 1.41 per unit increase; 95%CI = 1.08–1.84) and daughters‐in‐law caregivers (OR, 0.17, 95%CI, 0.05–0.57). Conclusions: Specific BPSD symptoms could contribute to the expression of PHB. In addition to decreasing caregiver burden, more intensive treatment and care strategies are required to manage individual symptoms.
Patient-initiated violence may pose a significant risk to the strength and longevity of informal caregiving relationships in psychosis. We aimed to assess caregiver reports of patient-initiated violence in early psychosis and to examine the relationship between violent incidents and appraisals of caregiving, perceived mental wellbeing in caregivers and Expressed Emotion (EE) in the caregiving relationship. Eighty psychosis caregivers were recruited via Early Intervention (EI) psychosis services in London, United Kingdom. Caregivers were questioned about their experiences of patient-initiated violence during the semi-structured Camberwell Family Interview, and completed the Experience of Caregiving Inventory and the RAND SF-36 health survey in a cross-sectional experimental design. One third of the sample reported at least one incident of patient-initiated violence. Reports of violence were associated with poorer mental wellbeing scores amongst caregivers and more negative appraisals of caregiving. Patient-initiated violence also correlated with greater criticism and hostility expressed towards patients, and a rating of high EE in caregiver reports. The results underscore the need to ask explicitly and routinely about the physical safety of caregivers looking after someone with psychosis. Families should be directed towards appropriate interventions to help manage any risk of violence and the likely negative impact on the caregiving relationship.
A modest association can be found between people with a schizophrenia spectrum diagnosis (psychosis) and perpetrating acts of violence. When a person with psychosis does engage in violence, it is their informal carers, when compared to those from the general population, who are more likely to be the targets, and violence will often occur within the family home. Despite the importance of carer support for improving patient outcomes, our understanding of how carers are impacted by patient initiated violence in psychosis remains limited. This paper reviews literature documenting the effects of patient-initiated violence in psychosis on carer functioning. The review comprised searches of Medline, PsychInfo, Embase, and Web of Science databases and the hand searches of reference lists from relevant published papers. The review was limited to English language publications from inception to 11th September 2017, and where carer experiences following reports of violence from patients with psychosis were specifically recorded. Data from 20 papers using mixed methodologies were reviewed. Patient violence in psychosis was linked to poorer carer outcomes, including carer reports of burden, trauma, fear, and helplessness. There is, however, a significant need for further studies to systematically quantify the impact and correlates of patient initiated violence on psychosis caregivers, and improve prevention.
Background: As with many other populations, abuse of older adults is a growing problem across the Africa Diaspora. Modernization and urbanization are eroding the traditional values of respect for older adults. Also, older adults living in environments with limited social and economic resources, and having no means of economic support create a recipe for elder abuse and neglect. Methods: This article reviews the current literature on the epidemiology, risk factors, and interventions used for elder abuse across the African Diaspora. Results: Reports of elder abuse range from 24.9% to 81.1% across the Diaspora. Risk factors include cognitive and physical impairment, social isolation, lack of resources and widowhood. Conclusion: Community-based programs using the unique social networks of older populations of African descent can provide a venue to improve caregiver training and support, reinforce traditional filial and informal caregiving practices, increase the utilization of available governmental and institutional.
Purpose: The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia. Design/methodology/approach: A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives. A secondary analysis of the theme of risk/abuse is reported here. Findings: Concerns about risk/exploitation were often expressed in the narratives, and covered a range of areas including driving, safety in the home, safety outdoors, falls, finances, risk to PwD from others, risk to others from PwD, potential or actual police incidents and neglect. Research limitations/implications: The narratives were elicited as part of another project and participants were not asked directly about risk; themes reported here were brought up spontaneously by participants. Practical implications: In relation to dementia a wide range of risk/abuse issues is of concern to PwD and their carers, including driving and financial vulnerabilities. PwD and carers are prepared to talk about risk/abuse when given an opportunity. It is important to investigate and understand experiences and concerns about risk/abuse if they are to be addressed in health and social care practice. Originality/value: The narratives offer unique insights into the concerns of PwD and family carers.
With the continued implementation of the personalisation policy, Personal Budgets (PBs) have moved to the mainstream in adult social care in England. The relationship between the policy goals of personalisation and safeguarding is contentious. Some have argued that PBs have the potential to empower recipients, while others believe PBs, especially Direct Payments, might increase the risk of abuse. This paper provides empirical evidence about levels of uptake of PBs and safeguarding referrals in England based on in-depth analysis of national data at aggregate, local council level in England, covering 152 Councils. This is complemented by analysis of 2,209 individual referral records obtained from three purposively selected study sites. The aim is to explore whether available data could provide evidence of association between the uptake of PBs and safeguarding referrals. Analysis of the national dataset found no significant relationships between PB uptake and the level and type of alleged abuse. However, analysis of individual-level referral data, from the three selected sites did find some significant associations particularly with financial abuse; and found the main perpetrators of the alleged abuse to be home-care employees. The findings are discussed within the context of current policy and practice.
Elder abuse is an increasingly prevalent issue in South Korea. The current study examines the association between functional impairment and emotional abuse victimization in Korean adults 65 and older. We also examines the mediating roles of diverse aspects of family resources (i.e., older adult’s self-esteem, family cohesion, family assistance, contact with friends/neighbors, and participation in social activities) in the aforementioned association. We analyzed 9691 community-dwelling older Koreans from a population-based survey of the 2009 Survey of Elderly Care and Welfare Need. We conducted a path analysis to analyze the mediational hypothesis. About 11% of the study sample reported experiencing emotional abuse by a family member in the past year (n = 1082). The results of the mediational analysis showed that greater ADL/IADL limitations were associated with (a) reduced self-esteem and (b) receiving more assistance from family, which were ultimately associated with increased risk of emotional abuse victimization. Elder abuse is a family crisis that may occur as a result of maladaptation to the heightened long-term care needs of older family members. Practitioners should take into account older adults’ vulnerability in terms of the loss of adaptive resources in the face of functional decline. This study further supports the importance of relieving the burden of family caregivers to avoid the incidence of emotional elder abuse.
Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior. Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer's disease (AD) and to identify risk factors for elder abuse in Italy. Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman's correlation coefficients, principal-component analysis, and Cronbach's alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed. Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach's alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances. Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.;
There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers’ thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative’s death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences.
There have been two widely reported criminal cases where informal carers, including family members, have been found guilty of the gross negligence manslaughter of the vulnerable person in their care. In this article, Richard Griffith considers the duty on informal carers when caring for a person and the duty on district nurses to protect vulnerable persons from harm.
This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.
Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts. Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.
However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?
This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:
Background: Elder mistreatment is a well-recognized public health issue with complex underlying factors. The current study hypothesized that there is no effect of any of the following factors on any type of elder mistreatment: ethnicity, age group, education status, gender, living arrangement, concentration problems, medication for any disease, income level of caregiver, use of alcohol and tobacco products, and dependence on family or caregivers for daily activities. Materials and methods: We conducted a cross-sectional study of 339 elders adults aged 60 or above residing in a rural part of eastern Nepal between August and November 2016. Multi-stage cluster sampling was adopted to select the study subjects. Information was collected using semi-structured questionnaires administered to elderly people by a designated interviewer. Factors associated with elder mistreatment were analyzed using logistic regression. Results: Our findings revealed that 61.7% of 60+-year-olds experienced some form of mistreatment (physical 2.4%, psychological 22.4%, caregiver neglect 57.5%, financial 12.1% and stranger-inflicted 8.3%). Elder mistreatment was associated with the following characteristics of elders: dependent on family for daily living activities, illiterate, experiencing concentration problems, residing in a living arrangement with their son(s)/daughter(s)-in-law, taking regular medications, belonging to the Dalit community according to the Hindu traditional caste system, and residing with a caregiver having a monthly family income of less than NRs. 20,000 (193USD). Conclusions: Our data show that elder mistreatment is prevalent in a rural community of Nepal. Addressing the lower socio-economic or socio-cultural classes of caregivers and elders via community-focused development programs might have significant implications for improving the well-being of elders.
What happens when family caregivers experience violence and abuse from the older person for whom they care? Although this issue has received little global attention, it is relevant to researchers, practitioners, and policy makers working across the intersecting fields of older age care and medicine, adult protection and safeguarding, and domestic and intimate partner violence. To date, these fields have generated diverse explanations of violence and abuse in older age illness and how best to respond to it. This article reports the findings of a systematic literature review of 18 quantitative, qualitative, and mixed-methods studies that investigated violent and abusive behavior by older people toward their family caregivers. The review identified three central themes in the literature: (1) There are inconsistent definitions and measurements used in research about harmful, violent, and abusive behavior toward family caregivers. (2) Violent and abusive behavior toward caregivers is a sensitive and hidden topic that poses practical and methodological challenges for researchers. (3) There is some evidence to suggest that people who were violent and abusive in their earlier life—or who had a poor relationship with their family member in the past—are more likely to continue to experience violence and abusive behavior in later life. There were two central ways in which violence and abuse were conceptualized and investigated: as a “symptom of illness” or as an “act of abuse” and we present a visual map of the relationship between these two conceptualizations drawn from our analysis of the literature. We conclude by discussing the implications of the findings and recommend future directions for practice, research, and policy to support affected families.
Background: The detection of elder mistreatment is emerging as a public health priority; however, abusive behaviors exercised by caregivers are little known and rarely detected among primary health care professionals. This study aims to estimate the prevalence of risk of abuse against community-residing elderly with moderate to severe dependency whose caregivers are relatives. In addition, we aim to describe the association between such a risk and socio-demographic variables, cognitive and dependency state of the victim, and the scale of the caregiver's anxiety, depression, and burden.; Methods: Cross-sectional study developed in 72 Primary Health Care teams from Barcelona, Spain. Participants were caregivers and their dependent care recipients (N = 829). Home interviews included the Caregiver Abuse Screen (CASE); self-reported abuse from care recipient; activities of daily living and cognitive state of the care recipient; anxiety and depression in caregivers and Caregiver Burden Scale. The relationship prior to the dependency, positive aspects of caregiving, and social support for the caregiver were also assessed. Multivariate analysis was performed using logistic regression with risk of abuse as dependent variable.; Results: Caregivers were mainly women (82.8%) with a mean age of 63.3 years. Caregivers and care recipients lived in the same household in 87.4% of cases, and 86.6% had enjoyed a good previous relationship. Care recipients were women (65.6%), with a mean age of 84.2 years, and 64.2% had moderate to severe cognitive impairment. CASE demonstrated a prevalence of 33.4% (95% CI: 30.3-36.7) of abuse risk by the caregiver. Logistic regression showed as statistically significant: caregiver burden (OR = 2.75; 95% CI: 1.74-4.33), caregiver anxiety (OR = 2.06; 95% CI: 1.40-3.02), caregiver perception of aggressive behavior in the care recipient (OR = 7.24; 95% CI: 4.99-10.51), and a bad previous relationship (OR = 4.66; 95% CI: 1.25-17.4).; Conclusions: Prevalence of risk of abuse is high among family caregivers. Our study has found risk factors in family caregivers that are preventable to an extent, namely: anxiety and feelings of burden. It is essential to become aware of these risk factors and their causes to intervene and help primary as well secondary prevention
Despite its familiarity, the realities of care are both complex and contested. This book offers a unique approach to scrutinising the co-existence of both care and abuse in relationships. It demonstrates ways of increasing critical reflexivity when working with people involved in difficult care relationships. The book emphasises that when talking about care, we need to care about talk. Discourse analysis is introduced as a method of investigating relationships, policy and literature in informal care. Analytic tools are considered alongside case studies to illustrate how both carer and caree construct their relationship and account for difficulties with each other. The book addresses key questions, including: What can we learn by muddying the false polarities between `care/abuse' and `carer/caree'? How do carers and carees use life histories to explain troubled relationships? What can discourse analysis add to how we make sense of individual carer/caree accounts? How can health and social care practitioners [...]
This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only.
Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.
Original document (pdf) on Welsh Government website.
The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.
The evidence to the Joint Select Committee on Human Rights paints an often harrowing picture of neglect, abuse and the denial of fundamental human rights to adults living with learning disabilities in the UK. Evidence received by the Committee reveals that people with learning disabilities are more vulnerable to abuse and are less likely to understand their fundamental human rights, including to be treated with dignity and respect by public authorities. Adults with learning disabilities and their advocates and carers told the Committee about how people were denied the opportunity to conduct their own lives as any adult would take for granted including the ability to form and conduct relationships.
The article provides an overview on young carers the services they need within their community. It notes that young carers are individuals under 18 who provide primary care in their families due to parental addiction, disability, illness. Further, it states that parental absence due to divorce, desertion, or overseas military service can also serve as a ground for youth to become young carers. It mentions the negative impact of caregiving among young carers including the loss of childhood through having to provide care for other family members, poor social skills, and stress caused by conflicting needs and situations.
Presents a list of medicine and health research sources selected by the editorial board for the October 2004 to April 2005 issue of the magazine "Research Matters." "A Better Life: Private Sheltered Housing and Independent Living for Older People"; "New Lifestyles in Old Age: Health, Identity and Well-Being in Berryhill Retirement Village"; "Young Carers in the UK: The 2004 Report"; The Commercial Exploitation of Children and Young People: An Overview of Key Literature and Data; "Images of Abuse: A Review of the Evidence in Child Pornography."
Partners appear to be the main perpetrators of neglect according to a new report that has triggered a government review of its No Secrets adult protection guidance. The author reports.
Community-based organizations (CBOs) have the potential to provide high quality services for orphaned and vulnerable children in resource-limited settings. However, evidence is lacking as to whether CBOs are reaching those who are most vulnerable, whether attending these organizations is associated with greater psychosocial wellbeing, and how they might work. This study addressed these three questions using cross-sectional data from 1848 South African children aged 9–13. Data were obtained from the Young Carers and Child Community Care studies, which both investigated child wellbeing in South Africa using standardized self-report measures. Children from the Child Community Care study were all CBO attenders, whereas children from Young Carers were not receiving any CBO services, thereby serving as a comparison group. Multivariable regression analyses were used to test whether children attending CBOs were more deprived on socio-demographic variables (e.g., housing), and whether CBO attendance was in turn associated with better psychosocial outcomes (e.g., child depression). Mediation analysis was conducted to test whether more positive home environments mediated the association between CBO attendance and significantly higher psychological wellbeing. Overall, children attending CBOs did show greater vulnerability on most socio-demographic variables. For example, compared to children not attending any CBO, CBO-attending children tended to live in more crowded households (OR 1.22) and have been exposed to more community violence (OR 2.06). Despite their heightened vulnerability, however, children attending CBOs tended to perform better on psychosocial measures: for instance, showing fewer depressive symptoms (B = − 0.33) and lower odds of experiencing physical (OR 0.07) or emotional abuse (OR 0.22). Indirect effects of CBO attendance on significantly better child psychological wellbeing (lower depressive symptoms) was observed via lower rates of child abuse (B = − 0.07) and domestic conflict/violence (B = − 0.03) and higher rates of parental praise (B = − 0.03). Null associations were observed between CBO attendance and severe psychopathology (e.g., suicidality). These cross-sectional results provide promising evidence regarding the potential success of CBO reach and impact but also highlight areas for improvement.
With a landmark study under way on domestic violence among older people, the author investigates abuse that has long been overlooked.
The editorial on child maltreatment in the September issue of the BJGP prompted me to think again about young carers. It talked about the fact that many maltreated and vulnerable children do not have an administratively competent carer and that often parents have health issues such as alcohol misuse or physical or mental health problems that can affect their children. In general practice it is not uncommon for us to see the parents but not see the young people themselves. However, young carers are at risk of social isolation and bullying, under-achievement, absenteeism from school, and physical and mental ill health. Having a holistic approach to family medicine should include supporting the young people in their caring role. We can do this by explaining to parents we are happy to support their children too. We can also signpost them to useful websites like www.youngcarers.net or local groups for young carers that can provide youth worker support, youth clubs and days out depending on the area. Perhaps I can set a challenge to GP’s reading this and suggest a way to double their CPD points? Find out what is available in your area to support young carers and next time you see a patient with health issues who has children at home think also about what support their children may need.
Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.
Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).
Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).
Concerns raised over number of prosecutions made against care staff or carers for ill-treatment or wilful neglect of people subject to the Mental Health Act or Mental Capacity Act. [Journal abstract]
This article focuses on the abuse of ageing caregiving women (55 years or older) by the spouses or parents for whom they provide care. Data presented were derived from a study of the dynamics of family caregiving focusing on Mexican American and Anglo caregiving dyads. Analysis focused on identifying correlates of abuse from a group of variables that represented the structure and context of caregiving. Data suggests the problem is not trivial and the interactional context of caregiving is the most promising aspect for explanation, intervention, and prevention.
Aim. To describe various situations in which older people in South Africa are vulnerable.
Background. Poverty compromises the health of many older people in South Africa but the circumstances and ways in which this is managed and risk thought of is poorly understood. This paper presents three scenarios that describe individual studies and provide insight into the factors influencing the lives of some older people.
Method. Scenario 1 concerns people with dementia. Pilot work has collected interview data from four people with dementia, their four informal carers and three hospital nursing staff.
Scenario 2 concerns an analysis of data collected routinely as part of the Halt Elder Abuse Line, a telephone-based service for people to report abuse.
Scenario 3 concerns an interview study with farm workers who have retired and who are vulnerable to being displaced from the farms.
Conclusion. A variety of policy, social and individual factors result in older people being vulnerable and continuing research is required to further develop an understanding of these dynamics of risk to promote changes to current policy and practices.
Background: Several studies have investigated abusive behaviour by carers towards people with dementia, most using unvalidated scales; only two reported correlates of abuse after controlling for mediators and confounders, and these controlled for different factors.
Objective: To investigate the acceptability and validity of the Modified Conflict Tactics Scale (MCTS) and abuse correlates.
Methods: Eighty-six people with Alzheimer's disease and their family carers, originally recruited for a representative community study were interviewed. We asked carers about acceptability of the MCTS and investigated its validity by comparing scores to the Minimum Data Set (MDS) abuse screen (an objective measure) and testing hypotheses that MCTS score would correlate with the COPE dysfunctional coping scale but not carer education.
Results: Twenty-four (27.9%) were identified as abuse cases by interview. No care recipients (CRs) screened positive for abuse using the MDS screen. Seventy-two (83.7%) participants thought that the scale was acceptable, ten (11.6%) that it was neither acceptable nor unacceptable, and three (3.5%) that it was unacceptable. As hypothesised, MCTS scores correlated with dysfunctional coping scale score but not carer education.
Conclusions: This is the most comprehensive study so far in this field. The MCTS was acceptable and had convergent and discriminant validity for measuring carer abuse. The MDS failed to identify cases of abuse. Carer male gender and burden, and greater CR irritability, cognitive impairment but less functional impairment predicted carer abusive behaviour. Our findings appear to refute UK government elder abuse reduction policy which assumes that few incidents of abuse arise from carer stress.
The report by the Joint Select Committee on Human Rights paints an often harrowing picture of neglect, abuse and the denial of fundamental human rights to adults living with learning disabilities in the UK. Evidence received by the Committee reveals that people with learning disabilities are more vulnerable to abuse and are less likely to understand their fundamental human rights, including to be treated with dignity and respect by public authorities. Adults with learning disabilities and their advocates and carers told the Committee about how people were denied the opportunity to conduct their own lives as any adult would take for granted including the ability to form and conduct relationships.
Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.
This article is about carers being discouraged from performing regular breast examinations for women who have a learning disability and who are unable to perform it upon themselves. This follows guidelines issued by the Cancer Screening Programme in 2000. The article looks at the need to perform breast examination, draws on feminist thought and explores the possible reasons for the guidelines, focusing on issues of abuse, consent and who should perform the examination. Conclusions are reached that women who have a learning disability should receive the opportunity for breast examinations to be conducted, and recommendations are made in relation to the issues of abuse, consent and who should perform the examination.
Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions. We interviewed 21 residents, 17 relatives and 30 staff and five main themes were identified: Privacy and choice; relationships (abuse and vulnerability); activities; physical environment; and expectations of a care environment by carers, should they one day live in long-term care themselves. Despite being no longer responsible for the day-to-day care of the residents there was a continuing level of psychological distress among some relatives. We found that residents with a range of severity of dementia were able to participate. The most striking theme from their interviews was the need for choice. All groups talked about improving lines of communication amongst residents, relatives and staff and about the importance of activities. We recommend that homes should set up formal structures for engaging with user and carer views at all levels. This would mean relatives on the board, and regular meetings for residents, relatives, advocates and staff. This should lead to cultural changes where residents are perceived as individuals and care is provided in a more flexible way. There should be a programme of activities in each 24-hour care setting, which all care staff are given time to implement. These activities need to be tailored to the individual resident rather than the whole group.
Adult abuse can occur in many different settings and situations. It is usually a very complex area of work. Therefore employees need to be aware of situations which may put a vulnerable adult at risk. This has highlighted the need for guidelines and procedures for Social Work Services, Police, Health Services, and independent providers. This multi-disciplinary approach is designed to address the abuse of vulnerable adults in community, hospital and institutional settings, with the focus on both informal and formal carers. These procedures require any responsible person to act with regard to any information which comes to their attention giving reasonable grounds to suspect that a vulnerable adult has been abused. In all instances these procedures and key steps will be followed by all agencies, units and establishments. These procedures and practice guidelines refer to cases where abuse has occurred and specific action is required to ensure the protection of the vulnerable person.
Increasing longevity and the growing proportion of the aged in the population in most countries have served to focus on the question of how governments and older people can finance living, health, and care options in retirement. Prudent management of income and assets is an increasingly complex and important aspect of aging as assets and expectations of self-financing increase. Although many informal caregivers act as asset managers and/or substitute decision-makers for older people, little attention has been paid to this increasingly important aspect of care. This paper summaries key findings of a broad research program exploring family involvement in the management of older people's assets and the practices that constitute good practice as well as financial mismanagement and abuse. It identifies multi-level and multi-strategy responses needed to address the issues raised by the research and outlines an innovative community demonstration project aimed at improving financial management practices in relation to older people's assets.
Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.
This article describes a survey of 84 adults with disabilities who received personal assistance with activities of daily living from family members, informal providers, or agency personnel. Results showed that 30 percent reported mistreatment from their primary provider, and 61 percent reported mistreatment by another provider. Verbal abuse, physical abuse, and theft or extortion were the most common forms of mistreatment by primary providers. Verbal abuse, neglect, poor care, and theft were the most common forms of mistreatment by other providers. Adults with lower incomes were the most likely to experience mistreatment. Male providers were more likely to mistreat, as were providers who were inexperienced and who provided more than 50 hours of care per week.
This research provides a three-way perspective on the experiences & needs of children who are living with & caring for parents with severe & enduring mental illness. The views of children, parents & key workers were sought in order to provide deeper insight into the needs of families & the nature of interfamilial relationships, as well as the relationships between service users & providers. Child protection & medical research has long proposed a link between parental mental illness & the risk to children of abuse, neglect & developmental delay. The inevitability of risk associations is challenged by the research described here & outcomes for children of caring for parents with mental illness are discussed not simply in terms of risk to children but more broadly in respect of, for example, positive parent-child relationships. References. [Copyright 2006 John Wiley and Sons, Ltd.]
The purpose of this article is to provide an overview of an empirically based theoretical model of abuse of women with physical disabilities. The Abuse Pathways model was developed from a critical disability life history research study conducted with 37 women who had simultaneously experienced abuse and physical disability. The model begins to address the complexity of abuse of women with physical disabilities by identifying the interactive components of the phenomenon. These components include (1) the social context of disability; (2) women's abuse trajectories; and (3) vulnerability factors for abuse. The article concludes by discussing potential applications and limitations of the model.
This study used a representative cross sectional survey to determine the prevalence of abusive behaviours by family carers of people with dementia. Participants were 220 family carers of people newly referred to secondary psychiatric services with dementia who were living at home. Participants were selected from community mental health teams in Essex and London. The main outcome measure used were psychological and physical abuse (revised modified conflict tactics scale). 115 carers reported some abusive behaviour and 74 reported important levels of abuse. Verbal abuse was most commonly reported. Only three carers reported occasional physical abuse. Abusive behaviour by family carers towards people with dementia is common, with a third reporting important levels of abuse and half some abusive behaviour. Results found few cases of physical or frequent abuse, although those with the most abusive behaviour may have been reluctant to report it.
This study investigates the prevalence of, and differences in, risk factor characteristics in a sample of two select populations of carers, one of which physically abused their elderly dependants and one of which neglected them. Nineteen carers (nine who had physically abused and 10 who had neglected their elderly relatives), who were referred to clinical psychology by either their general practitioner or their psychiatrist, were invited to take part in this study. A detailed history of risk factors was obtained, including history of alcohol dependency, type and history of mental ill health, history of maltreatment earlier in life, who they were caring for, how long they had been a carer and whether they felt isolated as a carer. Subjects were then given five assessments to determine whether there were any differences between the two groups. These were the Conflict Tactic Scale, Strain Scale, Beck Depression Inventory, Beck Anxiety Inventory and Cost of Care Index. An examination of the risk factors suggests that heavy alcohol consumption and past childhood abuse by fathers were likely to lead to physical abuse. Significantly higher conflict and depression scores were also present in the physical abuse group, while the neglect group had significantly higher anxiety scores. It is suggested that these findings should be incorporated into an assessment of future risk of abuse or neglect by the carer.
There are some useful tips for people considering reporting a concern, and it is helpful to compare whistle-blowing itself with the daily business of raising concerns and giving feedback. Those appearing in the scenarios were service users and staff. The scenarios could encourage further discussion in training groups. This CD Rom may persuade a new carer to report possible abuse.
The influence of substance use on patient's needs and caregiving consequences has received insufficient research attention. We sought to determine whether patients with comorbid substance use have higher levels of need, anxiety, depression, and caregiving consequences than those of patients who do not use substances. A total of 520 patients participated, and those who used substances (n = 216) reported higher levels of unmet needs, anxiety, and caregiving consequences than did patients who did not use substances. Carers of patients who used substances also reported higher anxiety and more caregiving consequences. Very few patients were actively involved in treatment programs to reduce their substance use.
The overall goal of the study reported in this paper was to examine differences in the perceived occurrence of abuse and neglect as between older care recipients, their family carers, and foreign home-care workers in Israel. Overall, 148 matched family members and foreign home-care workers and 75 care recipients completed a survey of abuse and neglect. Significant discrepancies in their reports of neglect were found, with the foreign home-care workers more likely to identify neglect (66%) than the older adults (27.7%) or their family members (29.5%). Although the rates of reported abuse ranged between 16.4 and 20.7 per cent and the differences were not statistically significant, the different parties assigned the responsibility for the abuse to different perpetrators. The independent variables that significantly associated with abuse and neglect also varied by the three groups of participants. The findings suggest that even with round-the-clock home care, the basic needs of many older adults are not met, and that many experience substantial abuse. The study emphasises the subjective nature of abuse and neglect, and suggests that more education about what constitutes elder abuse and neglect may lead to more accurate and consistent reports across reporting sources. Incorporating data from the various stakeholders may enhance the early identification of elder abuse and neglect.
Personalisation is about letting older and disabled people take risks others take for granted. But this means councils must find new ways of keeping them safe. [Introduction]
Chronic Illness represents a growing concern in the western world and individuals living with chronic illness are primarily managed at home by family caregivers. A scoping review of the home-care literature (2004-2009; updated with review articles from 2010 to January 2013) on the topic of the caregiver revealed that this group experiences the following safety-related concerns: caregivers are conscripted to the role, experience economic hardship, risk being abused as well as abusing, and may well become patients themselves. Methodology and methods used in the scoping review are presented as well as a brief overview of the findings. The concepts of risk and safety are defined. Risk Society Theory is introduced and used as a lens to view the findings, and to contribute to an understanding of the construction of risk in contemporary health-care. [Abstract]
The guidance looks at best practice for local commissioning partnerships to provide services to support carers of individuals with a drug problem. The document also covers how best to include carers (where appropriate) in the drug treatment of the individuals they are concerned for – citing the evidence base that demonstrates involving carers can improve outcomes for users. The guidance as a whole is predicated on the assumption that commissioners and services providers involve and consult carers in every stage of service design and delivery.
Objective: We wanted to explore possible associations between characteristics of carers, dementia sufferers and the caring situation and the presence of abuse that was acknowledged by carers.
Methods: Eighty-two carers of dementia sufferers were interviewed in their homes about three types of abuse (verbal abuse, physical abuse and neglect) using a structured questionnaire.
Results: Fifty-two percent (n = 43) carers admitted to having carried out some form of abuse. Verbal abuse was the most common form (n = 42, 51%), while 20% (n = 16) of carers admitted to physical abuse and 4% (n = 3) to neglect abuse. Significant associations were found between verbal abuse and psychological ill health in the carer and behavioural problems in the dementia sufferer. Physical abuse was significantly associated with higher levels of self-reported good health by the carer. High expressed emotion measured in carers was highly correlated with all types of abuse.
Conclusion: It is possible to identify situations where people with dementia may be at high risk of abuse from their carers. Any effective intervention strategy should address psychological health problems in the carer, behavioural problems in the dementia sufferer and a strategy to manage high levels of expressed emotion in these situations.
Objectives: To test the hypothesis that family and professional caregivers have different views about what constitutes elder abuse.
Design: A vignette was given to family and professional carers. They were asked to rate 13 management strategies for behavioural difficulties in a person with dementia on a Likert scale ranging from good idea to abusive. Some of the strategies were abusive according to the Department of Health's ‘No Secrets’ definition.
Setting and participants: Family carers were recruited as part of a study of Alzheimer's disease. We recruited professionals working in several clinical disciplines and settings from a mental health service for older people.
Results: Seventy-four family and 38 professional carers completed questionnaires. The only abusive strategy that significantly more professionals than family carers identified correctly was preventing someone moving by putting a table over their lap (33(86.8%) vs 35(47.3%), p < 0.0005). In contrast, significantly more family carers identified that the neglect item of accepting someone was not clean was abusive (21(28.4%) vs 3(7.9%), p = 0.009).
Conclusions: Professionals and carers reported significantly different views from each other and guidelines about what constituted elder abuse. This may be because abuse remains unacknowledged if people feel there are no better management options, and reporting leads only to punitive action for the carer perhaps coupled with institutionalisation for the person with dementia. Successful guidelines require societal agreement about what constitutes abuse and that prevention leads to better outcomes.
One cannot imagine that an individual with dementia could be abused by their carers who, more often than not, are close family members. Yet sufferers stand a high chance of falling victim to abuse because of their vulnerability. In this next article, Colm Owens and Claudia Cooper explain how they went about finding out from family carers of dementia sufferers how far abuse can go in order to understand what drives an individual to act in such a way.
Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although ‘minding the money’ has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that ‘minding the money’ is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.
The thesis pursued in this article is that an accelerating interest in elder abuse is central to understanding modern care policy as a social phenomenon. It will be argued that the 'discovery' of elder abuse legitimates practice in which the state monitors and co-ordinates but does not intervene. This has led to a social situation that has radically transformed social welfare of its traditional rationale as 'caregiver'. Simultaneously, informal care has become the centrepiece of social policy following the adoption of market forces to community care policies in the UK and elsewhere. One intended consequence of these policies has been to transfer the financial and emotional responsibilities for care to informal carers. The absence of a mechanism for formalising informal care is highly problematic. Such a social policy has found resolution through an emphasis on forms of abuse perpetrated by carers on older service users. This sudden concern for the safety and financial security of older people, who are service users, legitimates a role for welfare professionals within the bleak landscape constructed by community care policy. The price to be paid, however, is that the relationship between the state and older people has been reduced to one of surveillance and the enforcement of an oppressive notion of what community obligation might entail. As with other forms of tacit control, the surveillance role left to a residual local state evokes a 'surface' of reality as constructed as 'depth', whereby generic methods of surveillance are presented as 'concern' models. This act of observation confers a uniformity that emphasises the 'protective' role of the professional rather than the substantive requirements of older people at the centre of inspection.
Presents school management guidelines for dealing with child caregivers in Great Britain. Tendency to be regularly late or to hand in homework on time; Looking after family members with disabilities, mental illness, or substance abuse problems; Experience of schooling; Impact of caregiving responsibilities on academic achievement.
Objective: to undertake a systematic literature review of risk factors for abuse in community-dwelling elders, as a first step towards exploring the clinical utility of a risk factor framework. Search strategy and selection criteria: a search was undertaken using the MEDLINE, CINAHL, EMBASE and PsycINFO databases for articles published in English up to March 2011, to identify original studies with statistically significant risk factors for abuse in community-dwelling elders. Studies concerning self-neglect and persons aged under 55 were excluded. Results: forty-nine studies met the inclusion criteria, with 13 risk factors being reproducible across a range of settings in high-quality studies. These concerned the elder person (cognitive impairment, behavioural problems, psychiatric illness or psychological problems, functional dependency, poor physical health or frailty, low income or wealth, trauma or past abuse and ethnicity), perpetrator (caregiver burden or stress, and psychiatric illness or psychological problems), relationship (family disharmony, poor or conflictual relationships) and environment (low social support and living with others except for financial abuse). Conclusions: current evidence supports the multifactorial aetiology of elder abuse involving risk factors within the elder person, perpetrator, relationship and environment.
This study was carried out by the National Centre for Social Research and King’s College London and commissioned and co-funded by Comic Relief and the Department of Health. It presents findings of in-depth interviews with a selection of older people who have experienced abuse and mistreatment.
This qualitative study forms part of a wider programme of research involving a literature review, focus groups with service-providers and stakeholders, a national survey of over 2000 older people and a feasibility study for researching elder mistreatment in care homes. The study involved 36 follow-up interviews with older people who had responded to the survey and three interviews with older people accessed through specialist BME organisations. Twenty-two of these involved incidents where the perpetrator was a family member, paid carer or close friend. The remaining cases involved neighbours, acquaintances and, exceptionally, strangers. Three interviews were also carried out with family members who had supported the older person.
Young carers are children and young people who look after a family member with illness, disability or mental health or substance misuse problems. Often the relative is not getting the support needed from statutory services. Of an estimated 175,000 young carers, 13,000, including 3,500 at primary school, provide more than 50 hours a week. Asks why they are hidden and discusses the failing education and adults’ services. Most adult carers, let alone young carers, are unaware of their rights. A handful of local authorities have a child-friendly carers assessment tool, but most professionals are unclear who should assess young carers and under what legislation.
The general knowledge of family caregivers’ experience of burden during the continuing care of a close relative with dementia is incomplete. Several types of care settings are available today, and, for carers, modalities of burden probably differ between these settings. The aim of this study was to explore whether burden differed significantly between former family caregivers (FFCs) to people with dementia who were in group living care (GLC), a small home-like unit for six to eight people, compared with people with dementia in nursing homes (NH). Twenty-six FFCs to people with dementia living in GLC and 17 FFCs to people with dementia living in NHs participated in the study. Validated scales were used to assess symptoms of dementia and provide a picture of caregiver burden, including factors such as strain, emotional involvement and environmental burden. We found that FFCs to people with dementia in NH care had a significantly higher degree of total burden, strain and environmental burden compared with FFCs to people with dementia in GLC. A significant percentage of FFCs also reported receiving insufficient information about dementia and support services. It is suggested that by adjusting physical and psychosocial settings to the cognitive state of the resident, as was done in the GLC approach, may explain the feelings of reduced burden experienced in these group of FFCs.
The study examined the effect of adult children’s disability on parents’ physical health in later life and the extent to which parents’ symptoms of alcoholism in mid-life moderates the link between children’s disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child’s mental health problems on parents’ later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of aging parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts.
The increase of chronic illness as a leading cause of death has given rise to self-care and expert patient initiatives. Caring for chronically ill people places a tremendous economic burden on the health care system, informal carers, the labour market and benefit system (Department of Health 2001, 2004, 2005). Thus, in many countries health policy encourages patients to become ‘experts’ in the self-management of their conditions in the belief that it will help save money and improve health and well-being (Wanless 2002). For example, the notion of ‘expert patients’ has emerged in UK policy and is pivotal to government plans to modernise the National Health Service (NHS) by linking patient expertise to ideas of empowerment, a better quality of life, self-esteem and a user-driven NHS (Department of Health 2001; Fox et al 2005). Self-management and expert patient initiatives aim to encourage chronically ill patients to become more actively involved in decisions concerning their care and well-being (Lorig and Holman 2003; Lorig et al 1985, 1999, 2001).
Abuse in care relationships is an increasing concern in social policy and service provision. Attention has been drawn to the abuse of cared-for people in their own homes, the abuse of carers by family members and the abuse of people in institutional settings. Drawing on qualitative research with carers/carees from South Asian and African-Caribbean backgrounds, this paper explores a different conceptualization of abuse which moves away from an interpersonal understanding, to one that recognizes structural inequalities as a form of ‘institutional’ abuse of carers and those who receive care. This reconceptualization of abuse gives particular attention to forms of racism and discrimination in the provision of services to minoritized carers/cared-for people. It therefore makes significant contributions to discussions of caring and race equality in the health and social care fields.
Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.
Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.
Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.
This title looks at the needs of the service user in a care environment and the care which needs to be provided by an establishment and its staff. A better understanding of the needs of service users will improve the care skills of carers as well as satisfaction in their own work.
Designed exclusively for those providing care within the domiciliary setting, this title introduces home carers to the broad range of service user needs that they are likely to support or deliver. In exploring these across a variety of service user groups, including mental health and disability, it aims to establish the importance of recognising difference and individual need and will help develop an understanding of the types of need. These can range from physical & emotional to those of dealing with finances and housing issues. It also introduces the range of differing communication methods and behaviours presented by service users, including confusion and raises awareness of medication and medical conditions. It goes on to consider how to respond to incidences of abuse and loss of life. (DVD)
Objectives: To explore the perceptions of family carers, older people and health professionals in Australia about what constitutes elder abuse.
Methods: The Caregiving Scenario Questionnaire (CSQ) was disseminated to health professionals from two metropolitan hospitals, older volunteers and carers of older people with dementia recruited for other studies.
Results: One hundred and twenty health professionals, 361 older people and 89 carers returned the surveys. χ2 analyses indicated that significantly more health professionals than older people identified locking someone in the house alone all day (χ2 (2) = 10.20, p = 0.006, Cramer's V = 0.14), restraining someone in a chair (χ2 (2) = 19.984, p = 0.0005, Cramer's V = 0.19) and hiding medication in food (χ2 (2) = 8.72, p = 0.013, Cramer's V = 0.13) as abusive. There were no significant differences between healthy volunteer older people and carers in their perceptions of elder abuse. A significant minority (40.8%) of health professionals and over 50% of carers did not identify locking the care recipient alone in the house all day as abusive.
Conclusion: In Australia, there is limited consensus between older people, carers and health professionals regarding what constitutes elder abuse. Health professionals were more likely to identify abusive and potentially abusive strategies correctly than carers or healthy older people, but nonetheless between one quarter and two-fifths [correction made here after initial online publication] of health professionals did not identify the abusive strategies. Copyright © 2010 John Wiley & Sons, Ltd.
This document sets out the social services national outcomes framework for Wales. The framework describes the well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives; sets national direction for services to promote the well-being of people who need care and support, and carers who need support; and provides greater transparency on whether care and support services are improving well-being outcomes for people using consistent and comparable indicators. The well-being outcomes and associated indicators cover a whole range of personal and social dimensions, including: securing rights and entitlements; physical and mental health and emotional well-being; protection from abuse and neglect; education, training and recreation; domestic, family and personal relationships; contribution made to society; social and economic wellbeing; and suitability of living accommodation.
The provision of care within families, and specifically the difficulties within such relationships, has become the focus of much research, legislation and debate in recent years. This paper explores carers' and carees' talk about 'stress', home-based care. Carers' and carees' accounts are presented to theorise the construction of difficulties in the present relationship--focusing in particular on the taking up of or resistance to roles and responsibilities within the family. Family care is re-presented with a focus on language, and a reflection on how such relationships can become tinged with bitterness.
Over the last 30 years, the life expectancy of people with Down syndrome has increased dramatically. Significant medical advances have allowed affected persons to be seen more in the hospital setting, making it imperative that nurses understand their health care needs in order to provide positive health outcomes.
The purpose of this study was to use rigorous systematic review methods to summarise the effectiveness of interventions for elder abuse. Only eight studies met the inclusion criteria. Evidence regarding the recurrence of abuse following intervention was limited, but the interventions for which this outcome was reported failed to reduce, and may even have increased, the likelihood of recurrence. Elder abuse interventions had no significant effect on case resolution and at-risk carer outcomes, and had mixed results regarding professional knowledge and behaviour related to elder abuse. The studies had significant methodological limitations that limit the ability to draw conclusions about the effectiveness of these interventions.