Family Caregivers Of Persons Research Articles

Factors Associated With Stigma Among Caregivers of Patients With Bipolar Disorder in the STEP-BD Study

Little is known about the factors contributing to mental illness stigma among caregivers of people with bipolar disorder. A total of 500 caregivers of patients participating in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD) study were interviewed in a cross-sectional design on measures of stigma, mood, burden, and coping. Relatives and friends with bipolar disorder were assessed on measures of diagnosis and clinical status, determined by a days-well measure derived from psychiatrist ratings of DSM-IV episode status. Because patients' clinical status varied widely, separate models were run for patients who were euthymic for at least three-fourths of the past year (well group) and for those who met criteria for an affective episode for at least one-fourth of the previous year (unwell group). Stepwise multiple regression was used to identify patient, illness, and caregiver characteristics associated with caregiver stigma. In the unwell group, greater mental illness stigma was associated with bipolar I (versus II) disorder, less social support for the caregiver, fewer caregiver social interactions, and being a caregiver of Hispanic descent. In the well group, greater stigma was associated with being a caregiver who is the adult child of a parent with bipolar disorder, who has a college education, who has fewer social interactions, and who cares for a female bipolar patient. Mental illness stigma was found to be prevalent among caregivers of persons with bipolar disorder who have active symptoms as well as for caregivers of those who have remitted symptoms. Stigma is typically associated with factors identifying patients as "different" during symptomatic periods. Research is needed to understand how the stigma experienced by caregivers during stable phases of illness differs from the stigma experienced during patients' illness states.

Developing Evidence for an Internet-Based Psychotherapeutic Group Intervention

This paper describes the stages of collecting evidence for the effectiveness of a psychotherapeutic support group for family care-givers of persons with neuro-degenerative diseases. The goal was to duplicate on-line, the professional practice standards and client outcomes that apply when evaluating face-to-face support groups for family care-givers. Pilot studies of three caregiver groups generated data for the development of an intervention training manual, a user-friendly web site, and a computer training manual. Subsequently an Internet-based version of the group intervention was evaluated in a feasibility study with six groups of caregivers. This consisted of 10 on-line, professionally facilitated group sessions. In terms of technology, a user-friendly Web site that included video conferencing support for group member communication was developed and evaluated. Analyses of early, middle and late group video conferencing sessions supported fidelity of the on-line intervention and yielded themes congruent with face-to-face group process. Follow-up interviews six months following the initiation of the on-line groups showed overall positive participant responses in each of the following areas: using technology to communicate, bonding and providing mutual guidance and support, and benefiting in terms of coping with the stresses of caregiving.

Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers

ABSTRACT Objectives: An internet-based psychotherapeutic support group intervention for family caregivers of persons with neurodegenerative diseases was developed in a series of pilot studies and subsequently evaluated in a feasibility study with 34 participants. The aim was to duplicate online group interactions typical of face-to-face support groups. Methods: A user-friendly web site was developed according to usability criteria for older adult users. Unique features of the web site included video conferencing in two formats, one-on-one and a group format with up to 6 participants and a facilitator. Following ten professionally facilitated sessions, each group evolved into a web-based self-help support group facilitated online by a group member. Results: Qualitative analyses of early, middle and late group video conferencing sessions yielded themes congruent with face-to-face group process. Follow up interviews six months following the initiation of the online groups showed overall positive participant responses in each of the following areas: learning to use computers, negotiating the web site links, obtaining disease-specific information from the website, using technology to communicate, bonding with group members, providing mutual guidance and support, and benefiting in terms of coping with the stresses of caregiving.

P4-231: Depressive mood in family caregivers of persons with mild cognitive impairment

P4-231: Depressive mood in family caregivers of persons with mild cognitive impairment

P4-228: Family-supervised physical activity programs for persons with mild DAT: Impact and process

Because of their unique insights and perspectives into the needs and motivations of their older relatives and also because they often are asked to implement home–based health–related programs, family caregivers of persons with dementia can serve as significant collaborators with health professionals in program development, implementation, and evaluation. In an attempt to provide exercise options for community–dwelling persons with mild levels of dementia of the Alzheimer's type (DAT), individualized home–based exercise programs supervised by family members were developed, implemented, and evaluated. This poster describes the contributions of family caregivers to the refinement of individualized physical activity programs developed for persons with very mild or mild DAT and the impact of the programs on participants' physical functioning. Thirty persons with very mild or mild DAT (CDR 0.5 or 1) and their family exercise supervisors (N=60) participated in the three–month physical activity program. Family members provided information on which the individualized programs were based, received intensive training, and maintained telephone contact with the research team throughout the duration of the program. As they supervised the exercises, family members exercised along with their relative and afterwards recorded information on each session. Measures of physical ability (i.e., balance, flexibility, strength, and endurance) were obtained pre– and post–intervention. In–depth interviews and focus groups with family exercise supervisors provided qualitative data on factors influencing adherence and on the process of exercise participation. Participants who completed the three–month program demonstrated significant improvements in physical functioning. Family exercise supervisors reported their general reactions to the program, barriers to exercise that they encountered and ways they dealt with those problems, their reactions to the training sessions and monitoring process, the modifications or innovations that they made to the program on their own, their perceptions of the impact of the program on their relative and themselves, and their plans for future exercise. Family caregivers proved to be significant resources in the development, implementation, evaluation, and further refinement of successful home–based exercise programs.

Burden of Care in Families of Patients with Schizophrenia

Family caregivers of persons with schizophrenia and other disorders experience high levels of burden. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a medium income country in South America. Forty-one relatives of patients with schizophrenia who were attending a public mental health outpatient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale. All caregivers show a very high degree of burden, especially mothers, older, with low educational level, without an employment and who are taking care of younger patients. As developing country, Chile has a few national social welfare and community rehabilitation programs for relatives of psychiatric patients, especially in this part of the country. This significantly influences the high level of burden experienced by these caregivers. These results suggest a close monitoring of carer's mental health and the provision of a family intervention and psycho-social support.

Family caregiving of persons living with HIV/AIDS in Thailand: Caregiver burden, an outcome measure

The present paper provides an initial picture of HIV/AIDS-affected families. It is evident that families play a major role of support for HIV/AIDS patients in Thai society. Caregiver burden is one of the patient-related outcomes, which is the most common outcome measure in caregiver research. The demands on the family caregivers of these patients are enormous and need to be addressed. The determinants that are associated with caregiver burden such as caregiver characteristics, patient characteristics and social stigma are important for nurses to minimize the burden of care so that appropriate interventions can be developed for persons with HIV/AIDS and family members who share the work of managing their care at home.

Religiosity, Psychosocial Adjustment, and Subjective Burden of Persons Who Care for Those With Mental Illness

The purpose of this study was to characterize the nature of religious and spiritual support received by family caregivers of persons with serious mental illness and to test hypotheses that religiosity would be associated with caregiver adjustment. Eighty-three caregivers who participated in a study of the Family to Family Education Program of the National Alliance on Mental Illness were assessed at baseline in terms of their religiosity and receipt of spiritual support in coping. They also completed measures of depression, self-esteem, mastery, self-care, and subjective burden. Hierarchical regression was used to test hypotheses that religiosity would be associated with better adjustment, with confounding variables controlled for. Thirty-seven percent of participants reported that they had received spiritual support in coping with their relative's illness in the previous three months. When age, race, education, and gender were controlled for, religiosity was associated with less depression and better self-esteem and self-care. Personal religiosity was a stronger predictor of adjustment than religious service attendance. Family caregivers of persons with serious mental illness often turn to spirituality for support, and religiosity may be an important contributor to caregiver adjustment. Collaborative partnerships between mental health professionals and religious and spiritual communities represent a powerful and culturally sensitive resource for meeting the support needs of family members of persons with serious mental illness.

Training Community Consultants to Help Family Members Improve Dementia Care: A Randomized Controlled Trial

We investigated whether community consultants could be trained to teach family caregivers a systematic behavioral approach for reducing mood and behavior problems in persons with Alzheimer's disease. This study consisted of a randomized controlled trial; we randomly assigned 95 family caregivers and care recipients with Alzheimer's disease to STAR-caregivers (STAR-C) or control groups. Masked interviewers conducted assessments at baseline, after treatment, and after 6 months. Consultants were master's-level health care professionals who were currently practicing in community settings serving older adults. We assessed the extent to which consultants were able to learn and adhere to the treatment protocol, and the relationship between adherence and measures of caregiver mood, burden, and care recipient mood and behavior. Community consultants were able to learn and adhere to the behavioral treatment protocol. Caregivers receiving STAR-C training showed significant improvements in depression, burden, and reactivity to behavior problems in the care recipient. There were also significant reductions in the frequency and severity of care recipient behavior problems, and improved quality of life. Results were maintained at 6-month follow-up. Community-based consultants successfully implemented a behavioral intervention with family caregivers of persons with Alzheimer's disease. Consequently, STAR-C seems to be a practicable and reasonable evidenced-based approach to caregiver training in actual clinical settings.

Virtual support groups for family caregivers of persons with dementia

Virtual Support Groups for Family Caregivers of Persons with Dementia Elsa Marziali, PhD, Professor and Schipper Chair, Gerontological Social Work Research, University of Toronto and Baycrest Centre for Geriatric Care,Toronto, ON. TECHNOLOGY IN MEDICINE Introduction Family caregivers, largely women, provide the health and social care for dependent family members who have long-term chronic illnesses. Family caregiving can span many years depending on the stage of illness progression and the family’s resources for managing the needs of the care recipient. Caregiver stress and negative health outcomes are common. Intervention programs for family caregivers typically focus on a) support and/or educational groups; b) individual psychotherapy; c) interventions focused on the care recipient such as respite care; or d) combinations of two or more of these approaches. Most models of intervention produce small-tomoderate improvements in caregiver stress, depressive mood, subjective wellbeing, and coping ability.1–3 Intervention programs are delivered face-to-face in either group or individual formats and are either clinic based or provided in the home of the caregiver or care recipient. Providing similar services using technology such as the Internet presents significant challenges. E-Health Programs for Family Caregivers Technology has been used in the past to enhance intervention strategies with family caregivers of persons with dementia. ComputerLink is an Internet-based support network including a public bulletin board, private e-mail, and a text-based question-and-answer forum facilitated by nurses.4,5 The participants benefit in the short term but participation lags in the long term. REACH (Resources for Enhancing Alzheimer ’s Caregiver Health),6 a comprehensive multisite research program, evaluated the benefits of interventions designed to enhance family caregiving for Alzheimer’s disease and related dementias. In addition to faceto-face support services, two of six participating sites used digital telephone systems to enhance the delivery of information and consultation to caregivers. The Internet was not used for service delivery in any of the REACH programs. Overall, the intervention programs showed benefits to caregivers in terms of reduced stress and higher skill acquisition. Virtual Support Groups Our intervention program for dementia caregivers was developed through a series of pilot studies and subsequently evaluated in a feasibility study implemented in two remote areas: Timmins, Ontario and Lethbridge, Alberta. For the pilot studies, three groups of six spousal caregivers agreed to participate with informed signed consent. The groups were facilitated by two experienced social workers, initially in face-toface format and subsequently via Internet-based video conferencing. The overall aim of the intervention was to decrease the amount of stress experienced by the caregivers as well as enhance their knowledge and skills in managing the care of the dependent relative. The professional facilitators provided the intervention online for 10 sessions, and continual feedback was solicited from the participants regarding both the technical and clinical aspects of the program. The pilot studies yielded several modules. The first was an easy-to-use, An internet-based psychotherapeutic support group for family caregivers of persons with dementia was developed in a series of pilot studies and evaluated in a feasibility study with 34 participants. A user-friendly website was developed that included video conferencing in two formats: group and one-on-one. Following 10 professionally facilitated sessions, each group evolved into a web-based selfhelp support group. Six-month follow-up interviews showed overall positive participant responses with regard to learning to use computers, negotiating the website, providing mutual guidance and support, and improving management of caregiver

#17 The relationship of psychological stress and workload to risk factors for disease in family caregivers of persons with dementia

#17 The relationship of psychological stress and workload to risk factors for disease in family caregivers of persons with dementia

Spiritual well-being and caregiver burden in Alzheimer's caregivers

The purpose of this study was to examine the relationship between spiritual well-being and caregiver burden in family caregivers of persons with Alzheimer's disease. A descriptive, correlational research design was used, and a convenience sample of 150 caregivers was surveyed (71 African Americans, 77 Caucasians, and 2 other caregivers). Descriptive statistics were used to examine selected caregiver demographics. Statistical analysis included bivariate correlations using the Pearson product-moment coefficient correlation. The study's research question was as follows: What is the relationship between spiritual well-being and caregiver burden? It was hypothesized that there would be an inverse relationship between the 2 variables. A statistically significance inverse relationship (R = -.493, P < or = .01) was found to exist between the variables, thereby supporting the study's hypothesis. Additional findings revealed significant differences in African American and Caucasian caregiver's perception of spiritual well-being and caregiver burden. Caregivers also reported frequent use of spiritual behaviors or practices such as prayer. Findings implicate the need for further investigation and development of culturally relevant caregiver intervention strategies and programs that incorporate spirituality as a core component.

Instrumental help and caregivers' distress: effects of change in informal and formal help.

Family caregivers of persons with dementia rely on a range of resources to provide care and cope with caregiving stressors. Informal (unpaid) and formal (paid) instrumental support contribute to diverse caregiver outcomes. Previous research of caregiver support has focused on subjective measures of help or has compared caregivers receiving formal services to those who do not. We focused instead on the effects of change in the amount of formal and informal instrumental assistance on caregivers' distress. We expected that greater gains in assistance would be associated with greater reduction of caregivers' distress. Increases informal but not informal levels of assistance were associated with improvement in each measure of distress. Additional measures may be needed to fully understand the effects of informal and formal assistance.

A measure of subjective burden for dementia care: the Caregiving Difficulty Scale – Intellectual Disability

It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale - Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.

How Family Caregivers of Persons with Alzheimer Disease Achieve Mental Breaks: Preliminary Analysis from a Qualitative Study

There has been growing awareness that respite for family caregivers of persons with Alzheimer Disease can be conceptualized as a positive inner psychological experience as well as a service to provide a physical break. Little is known, however, about the specific activities and strategies caregivers use to achieve therapeutic mental breaks from caregiving concerns. This study examined the strategies and circumstances identified by 15 adult primary caregivers as providing mental breaks. Caregivers participated in two qualitative interview sessions and follow up member checks. Case-by-case and cross-case analyses, and structural synthesis were conducted to develop a working model describing mental breaks. This paper overviews the model, presents two cases illustrating model components, and provides preliminary implications for practice to stimulate therapists' thinking about applications for helping caregivers achieve mental breaks.

Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study

Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse caregivers.

Caregiving in Geriatric Psychiatry

Research on family caregiving has moved from relative obscurity to prominence in less than a decade. Studies on caregiving are regularly featured in the major medical journals in the United States; 1 Schulz R Beach S Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. JAMA. 1999; 282: 2215-2219 Google Scholar , 2 Schulz R Mendelsohn AB Haley WE et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New Engl J Med. 2003; 349: 1936-1942 Google Scholar , 3 Emanuel EJ Fairclough DL Slutsman J et al. Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. New Engl J Med. 1999; 341: 956-963 Google Scholar the majority of professional medical societies have official position statements on caregiving; and policy debates on caregiving are commonplace at all levels of government. A search of the phrase “family caregiving” on the worldwide web yields more than 150,000 entries, perhaps the most telling piece of evidence that caregiving, as a topic, has arrived.

A VA inpatient respite program for patients with dementia.

can result in high levels of stress, unwanted social role changes, depression, anxiety, a lowered sense of wellbeing, feelings of being burdened, deterioration of physical health, and a general feeling that life is overwhelming (5). Research on the family caregivers of persons with dementia has consistently revealed that respite care ranks among urgently desired community services (6). Inpatient respite care is a shortterm out-of-home stay for the patient with dementia. In the VA system, sustained treatment and rehabilitation units, nursing home care units, and extended care rehabilitation units usually provide this care for a short period, generally one or two weeks. The service gives the caregiver—who is usually related to the person with dementia, often as a spouse or adult child—a break from the stressful task of caring for the patient at home. As well as providing temporary relief from worry and stress, this type of service gives the caregiver time to attend to his or her own needs (7). The purpose of this column is to discuss the effects of inpatient respite care on persons with dementia and on their caregivers and the clinical implications for both patients and caregivers. We include a synopsis of an inpatient respite program at a local VA medical center as an example and make suggestions for better serving persons with dementia as well as their caregivers.

Effectiveness of communication strategies used by caregivers of persons with Alzheimer's disease during activities of daily living.

Communication difficulties between individuals with Alzheimer's disease (AD) and their caregivers are commonly reported. Caregivers carry the burden of managing breakdowns in communication because people with AD are often unable to modify their communicative behavior. To assist caregivers in this endeavor, clinicians and caregiving professionals have offered a variety of strategies aimed at accommodating the individual's declining abilities. Many of these strategies are intuitively appealing, but they lack empirical support. This study investigated the effectiveness of 10 frequently recommended communication strategies when employed by family caregivers of persons with AD. In particular, we assessed (a) which strategies family caregivers report using and with what degree of success, (b) which of these strategies are used by caregivers in actual interactions with their spouses, and (c) which strategies contribute to improved communication. The study included a self-report questionnaire and wireless audio-recorded interactions between 18 persons with AD and their spousal caregivers during activities of daily living. The findings validate the effectiveness of certain communication strategies (e.g., simple sentences) but not others (e.g., slow speech). The results should be of interest to both family members and professionals who want to enhance communication and the quality of their interactions with persons with Alzheimer's disease.

Burden in schizophrenia caregivers: impact of family psychoeducation and awareness of patient suicidality.

Family caregivers of persons with schizophrenia and other psychotic disorders experience high levels of burden. Although a number of patient and caregiver predictors of burden have been identified, little research has investigated the contributions of patient depression, suicidal ideation, and substance abuse. In addition, family psychoeducation interventions have reduced patient symptoms, as well as inpatient treatment utilization; however, it is not known whether or not these interventions reduce family burden. This study investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation, not patient's report of suicidal ideation; and that patient age, not duration of the illness, were significant independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden. Discussions focus on the relationship between burden and its predictors, and possible reasons why MFGT did not decrease burden. Modifications are proposed that may increase the impact of MFGT.