Dignity in dementia: Person-centered care in community

Drawing on Kitwood's [Ageing Soc. 13 (1993) 51] theory of person-centered care and the interpersonal process of caregiving, this article offers an alternative to the image of the family caregiver as victim through an exploration of the lived experience of caring for a person with dementia in community. Extending care beyond coping, the act of giving care is promoted as a worthy activity and reciprocal social opportunity. Three nonfamily caregiver “portraits” are offered in an arts-informed representational form. The relational processes of caregiving are explored from the vantage point of personal experience and theoretical knowledge. Dignity emerges as the resonant quality, essential value, and guiding principle in an ethic of dementia care. Implications about the direction of research about care and caregiving and research accessibility and usefulness are explored.     

Availability of caregiver support services: implications for implementation of the National Family Caregiver Support Program

This study examines the scope and range of existing resources for family caregivers from the perspective of the Area Agencies on Aging (AAAs), which are charged with implementing Title III-E of the reauthorized Older Americans Act. California is used as a case example because of its substantial experience in providing caregiver support services. In particular, we examine the extent and adequacy of resources available in California corresponding to each of the five Title III-E service areas, utilizing data from AAAArea Plans, a follow-up survey of AAAs, and an Internet search. AAAs identified more than 276 providers of caregiver support services, and our Internet search identified another 195. Nearly two-thirds of these programs offer access to respite care, while other support services (e.g., counseling, training, support groups) are less often available. Service gaps most frequently identified included culturally and linguistically appropriate caregiver services, transportation, respite care, financial assistance, and services in rural areas. These findings suggest the need for enhanced efforts to improve the service network for supporting family caregivers, as states implement the National Family Caregiver Support Program.     

A man's gotta do what a man's gotta do:: Husbands as caregivers to their demented wives: a discourse analytic approach

In our discourse analytic study on 15 stories written by Finnish husbands who were giving or who had given care to their demented wives, we identified articulations of four different ways to speak about one's actions and experiences as a family caregiver. We called these four modes of speech the factual, familistic, agency, and destiny speech repertoires. Using different speech repertoires in their narration, the husbands adopted the respective identities of an observer and reporter, a responsible caregiver, an independent actor, and a victim or a drifter. The speech repertoires and identity constructions varied according to the contexts of the writers' speech and bore different functions for the writers' narration. The main finding of the study was the diversity of husbands' experiences of caregiving and the contexuality of the ways in which these experiences were talked about.     

Availability of Caregiver Support Services

Abstract

This study examines the scope and range of existing resources for family caregivers from the perspective of the Area Agencies on Aging (AAAs), which are charged with implementing Title III-E of the reauthorized Older Americans Act. California is used as a case example because of its substantial experience in providing caregiver support services. In particular, we examine the extent and adequacy of resources available in California corresponding to each of the five Title III-E service areas, utilizing data from AAA Area Plans, a follow-up survey of AAAs, and an Internet search. AAAs identified more than 276 providers of caregiver support services, and our Internet search identified another 195. Nearly two-thirds of these programs offer access to respite care, while other support services (e.g., counseling, training, support groups) are less often available. Service gaps most frequently identified included culturally and linguistically appropriate caregiver services, transportation, respite care, financial assistance, and services in rural areas. These findings suggest the need for enhanced efforts to improve the service network for supporting family caregivers, as states implement the National Family Caregiver Support Program.     

Health care providers' readiness to screen for intimate partner violence in Northern Nigeria

Research on screening for intimate partner violence (IPV) within health care in a sub-Saharan African context is rare. This paper assessed factors associated with the readiness to screen for IPV among care providers (HCP, n = 274) at Kano hospital, Nigeria. Readiness was measured using the Domestic Violence Health Care Providers' survey instrument, which measures grade of perceived self-efficacy in screening for IPV, fear for victim/provider safety, access to system support to refer IPV victims, professional roles resistant/ fear of offending clients, and blaming the victim for being abused victim. Social workers perceived a higher self-efficacy and better access to system support networks to refer victims than peers in other occupation categories. Female care providers and doctors were less likely to blame the victim than males and social workers, respectively. Younger care providers of Yoruba ethnicity and social workers were less likely to perceive conflicting professional roles related to screening than older providers of Hausa ethnicity and doctors, respectively. Implications of our findings for interventions and further research are discussed.     

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver’s perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.     

The prevalence and incidence of intimate partner and interpersonal mistreatment in older women in primary care offices

Self-report information about mistreatment experiences and perpetrators were collected from a large sample of women over 55 years of age who sought care from Midwestern primary care offices. A significantly larger proportion of women had experienced sexual mistreatment since turning 55 that was perpetrated by an intimate partner than committed by an interpersonal perpetrator. The women experienced significantly more threats, physical mistreatment, and caregiver mistreatment since turning 55, and more threats and caregiver mistreatment within the last year by an interpersonal perpetrator than by an intimate partner. Several women described different types of perpetrators who had threatened or mistreated them. Few women reported the mistreatment to anyone. Implications for elder service providers and advocates are discussed.     

Who is accessing family mental health programs? Demographic differences before and after system reform

Childhood mental health disorders are on the rise in the United States. To ensure equitable access to care, it is important to examine the characteristics of children and families who access services. This study compares the demographic characteristics of two samples of families who participated in National Institute of Mental Health-funded studies of a Multiple Family Group model, entitled the 4Rs and 2Ss Multiple Family Group (4Rs and 2Ss) in New York City. One sample is currently receiving services, and the other received services a decade ago. Significant differences in demographic characteristics were found between the two samples pertaining to child race, child nativity, caregiver age, primary caregiver, caregiver marital status, caregiver race, caregiver education, caregiver employment, and family income. Families currently engaging in the public mental health service system are primarily White, and are less disadvantaged than families a decade ago. These differences are examined in light of changing policy and epidemiological trends, and potential unintended consequences are discussed.     

The Impact of Caregiver-Care Recipient Relationship Quality on Family Caregivers of Women With Substance-Use Disorders or Co-Occurring Substance and Mental Disorders

This cross-sectional study utilized a stress-process model to examine the impact of caregivers' (N = 82) perceptions of their relationship quality with a female family member (i.e., care-recipient) with substance-use or co-occurring substance and mental disorders on caregivers' perceived burden. Regression findings indicate that relationship quality impacts both subjective and objective burden. Higher levels of emotional support given to the care recipient by the caregiver predicted lower levels of caregiver displeasure; whereas higher levels of undermining of the care recipient by the caregiver predicted higher levels of caregiver stigma. Higher levels of emotional support received by the caregiver from the care recipient were associated with lower levels of caregiver displeasure and lower objective burden; higher levels of undermining of the caregiver by the care recipient predicted higher objective burden. Implications for practice and service delivery are presented.     

Racial and Ethnic Differences in Family Caregiving in California

Abstract

Family caregivers are the main source of long-term care for older persons in the United States. At the same time, cultural values and beliefs shape decisions surrounding who provides care and whether families use formal support interventions to assist the caregiver. The current article examines how the family caregiving experience differs among racial and ethnic groups in terms of caregiver characteristics, service utilization, caregiver strain, and coping mechanisms. Telephone interviews were conducted in English and Spanish with a random sample of 1,643 respondents in California who provide care to someone age 50 or over. Bivariate analyses showed evidence of ethnic differences in the demographic characteristics of caregivers, intensity of care provided, caregiver health, level of financial strain, religious service attendance, formal service utilization and barriers to formal services. Odds ratios showed that White and African American caregivers were about two times as likely to use formal caregiver services as were Asian/Native Hawaiian/Pacific Islander and Latina American caregivers. Implied by these findings is the need for further understanding of caregiver service needs among diverse racial and ethnic groups.     

Depression and Missed Work among Informal Caregivers of Older Individuals with Dementia

Although providing informal care can negatively affect caregiver emotional health and lead to depression, the association between caregiver depression and missed work is unknown. We use data from the National Longitudinal Caregiver Survey to examine the relationship between caregiver depression and missed work among informal caregivers for older veterans with Alzheimer’s disease or vascular dementia. Two-part models are used to estimate the expected hours of work missed among working caregivers. Caregiver depression is statistically significantly associated with the likelihood and amount of time missed at work, resulting in an average of an extra half-day of work missed per month. While the effect of caregiver depression on work missed is modest, it represents another possible benefit from interventions to support caregivers.     

“No Matter What I Do They Still Want Their Family”: Stressors for African American Grandparents and Other Relatives

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and caregivers are at risk for depression and other mental health concerns. Health and service providers should carefully assess the needs of caregivers when determining the needs of families where children are under care of nonparental relatives. Family-based services are needed that include caregiver supports as well as support for children.     

Developmental outcomes after five years for foster children returned home, remaining in care, or adopted

A substantial proportion of children who enter foster care in the US are infants or toddlers and will exit from foster care before they have been in care for long, either returning home or to adoption. These first years of involvement may predict a significant amount about children's longer term development so understanding developmental outcomes after five years is valuable to understanding if child welfare services (CWS) are serving the intention of promoting the well-being of children. A subsample of 353 infants (less than 13 months of age when investigated by CWS) and subsequently placed into foster care were selected from the National Survey of Child and Adolescent Well-Being. After 66 months, these infants had been reunified, adopted, or were still in foster care. Bivariate comparisons were completed. Statistical controls for maltreatment type and severity, demographic traits, and current caregiver education were implemented to help clarify the role of terminal child welfare placement, current caregiver behaviors, and household income, on eight linear regression models of developmental outcomes. Results support the longstanding tenet of child welfare services policy that remaining in foster care is less developmentally advantageous than having a more permanent arrangement of return home or adoption.     

Factors Related to the Institutionalization of Older Aged Individuals Using Home- and Community-Based Care Services: Data From the South Korea Long-Term Care Insurance Program, 2008–2013

South Korea introduced a public long-term care insurance (LTCI) program in response to its rapidly aging population. This study analyzed the association between living arrangement and caregiver type with institutionalization in LTCI grade 1 (very severe limitations), 2 (severe limitations), and 3 (moderate limitations) beneficiaries using data from the LTCI cohort, 2008 to 2013. The dependent variable was alteration status from home to institutional care within 1 year of receiving home service. Independent variables were living arrangement and primary caregiver type. The analysis was conducted using the generalized estimating equation model. Higher likelihoods of institutionalization were found in individuals living with a non-family member compared to individuals living with their spouses. Individuals without a caregiver or with a paid caregiver were also more likely to experience institutionalization than individuals with a spouse primary caregiver. Our findings underscore the importance of monitoring identified vulnerable groups of individuals to attain LTCI sustainability and enhance elderly quality of life.     

Personality Profiles of Adult Males Sexually Molested by Their Maternal Caregivers

Sexual abuse of males by female maternal caregivers is an underreported and little studied phenomenon. The present study examined two seemingly diverse groups of adult males who had been sexually abused as children by their female maternal caregiver: those in treatment at a clinic which specialized in working with sexual abuse survivors and those in treatment at a clinic which specialized in working with sexual offenders. This study suggests that the MMPI profiles of these two groups of adult males show greater psychological disruption than do the MMPI profiles of adult males who as children had not been vitimized by females or had been victimized by older males. Thus, treatment strategies may need to be formulated on the basis of the gender of the victimzer as well as on the gender of the victim.     

Self-identifying as a caregiver: Exploring the positioning process

There is a huge body of research focused on family caregivers. Underpinning this body of knowledge is the assumption that there exists some distinct entity known as a ‘caregiver’. Drawing on data generated through in-depth qualitative interviews with forty seven family caregivers, this paper will examine the usefulness of this self-identification to family members. Questions asked of the data included: how does one come to self-identify as a caregiver, what does it mean to be a caregiver, and how does affiliation with this self-identity influence the experience of caring for an older or frail family member. The analysis suggests that a recognition of oneself as a caregiver is produced primarily through interactions with others; without external influence, family members will often see the work they are doing as simply an extension of their relational role. Affiliating oneself as a family caregiver appears to have positive benefits which include promoting effective use of community support services and creating a sense of belonging and connection to a broader community. This can be empowering. However, an unintended consequence of assuming the position of caregiver may be the inadvertent discounting and marginalization of the person requiring care. Positioning theory is introduced as a useful conceptual frame for understanding the process and implications associated with self-identifying as a caregiver.     

Bonding and attachment of Australian Aboriginal children

In New South Wales, Australia, there is an increasing emphasis in the children's court on bonding and attachment assessments to determine whether or not a child remains with their carers. Aboriginal children and young people are over nine times more likely than other children and young people to be in out‐of‐home care. There is a paucity of information on culturally appropriate assessments of Aboriginal children in relation to bonding and attachment. Most assessments on the Australian indigenous families are based on the dominant Australian community's perception of what constitutes competent parenting. The question arises as to whether we are making psychologically and ethically sound decisions about whether or not a child remains with their Aboriginal carers based on evidence that is culturally appropriate for Western families but culturally inappropriate for the indigenous families. It is argued that the core hypotheses of attachment theory such as caregiver sensitivity, competence and secure base have to be based on the Australian Aboriginal people's cultural values. The aims of this paper are to explore the current practice on the bonding and attachment assessment of Aboriginal children using a dynamic eco‐systemic approach in the assessment of bonding and attachment of the indigenous people, with an emphasis on the historical, cultural and spiritual contexts. Copyright © 2003 John Wiley & Sons, Ltd.     

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.     

An Elder Care Training Needs Assessment Among Employee Assistance Program Staff Employed by New York State Government:

A mail survey of 224 EAP staff members employed by various departments of New York State government explored the issue of elder care. Self-report questionnaire data evaluated training history competence to handle employed caregiver problems/questions, and individual department commitment. Major findings generally replicated those of a previous regional study conducted with 95 Western New York EAP staff members. Survey results showed: (1) EAP staff members estimated that one in five employees currently provides care for an older dependent; (2) the majority (56.9%) of staff members have not received any training relevant to elder care; (3) self-assessed competence to handle elder care problems was low for 13 of 17 problem-solving domains constituting the Elder Care Competence Index (ECCI); (4) the few (14.9%) EAP staff members with extensive (two or more sessions) elder care training experience achieved ECCI scores nearly 150% higher than staff members without such training, p < .001; (5) most (73.0%) departments have not dealt with elder care in any formal way and only 3.6% of the EAP staff believe this inaction to be appropriate; and (6) department commitment to the issue of elder care is predictive of both training (p < .01) and staff competence (p < .01). The implications for training, policy, and future research are discussed.