Dyadic Intervention for Family Caregivers and Care Receivers in Early-Stage Dementia Purpose: The Early Diagnosis Dyadic Intervention (EDDI) program provides a structured, time-limited protocol of one-on-one and dyadic counseling for family caregivers and care receivers who are in the early stages of dementia. The goals and procedures of EDDI are based on previous research suggesting that dyads would benefit from an intervention that increases the care receiver’s active participation in his or her care plan, develops positive communication patterns between the caregiver and care receiver, increases knowledge and understanding about available services, and assists the dyad through the emotional turbulence of a diagnosis of Alzheimer’s disease or other dementing condition. Design and Methods: EDDI was developed in response to research and clinical findings that suggested that care dyads in the early stages of dementia and dementia care are able to engage in a dialogue about future preferences for care, and that this discussion could address some of the uncertainty and worry experienced by each member of the dyad. As part of a feasibility trial, 31 dyads participated in the EDDI program. Measures were obtained on the intervention’s implementation, including the number of sessions attended, caregiver and care receiver ratings of treatment acceptability and effectiveness, and counselor ratings of treatment effectiveness. Results: Participant and counselor evaluations of the EDDI protocol indicated that the intervention was acceptable and satisfactory to the caregivers, care receivers, and counselors, and that the intervention’s goals and objectives were achievable. Implications: These findings indicate that individuals with early-stage dementia and their family caregivers are able to participate in and benefit from a structured intervention that focuses on care planning for future needs. Read more
Measuring the Values and Preferences for Everyday Care of Persons with Cognitive Impairment and Their Family Caregivers Purpose: This study describes the development and psychometric properties of a 24-item scale to be used in both research and practice settings that assesses the everyday care values and preferences of individuals with cognitive impairment and the perceptions of family caregivers about their relative’s values and preferences for care. Design and Methods: The Values and Preferences Scale was developed on the basis of previous measures used with cognitively intact samples with additional items generated by the authors in consultation with an advisory committee of practitioners, researchers, family caregivers, and persons with cognitive impairment. Individuals with mild to moderate cognitive impairment and their family caregivers (n = 111) were interviewed for the study. Results: Results of a factor analysis determined that the Values and Preferences Scale can be divided into two domains or subscales for persons with cognitive impairment and their family caregivers (i.e., Environment–Social Network and Personal Autonomy). These domains were found to have good internal consistency for both the individuals and their caregivers (Cronbach’s alphas ranged from .70 to .82). Evidence of their psychometric properties compared with measures of depression, quality of life, and involvement in decision making was also found. Implications: These findings suggest that persons with cognitive impairment are able to express values and preferences about care they currently receive or will need in the future. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist those with cognitive impairment and their caregivers with daily care decisions and the development of care plans. Read more
Beyond the Chi-Square Caregivers Are More Than Just Faceless Statistics A multitude of research studies have examined family caregiver stress and burden. For the most part. Results from these projects describe group characteristics in quantitative statistical terms. In many cases, this method of evaluation may diminish the intense emotional and physical toll caregiving has on the lives of individual caregivers and care receivers. Far fewer articles are devoted to the stories behind the numbers to focus on the individual mental and physical strain caregivers endure. This article translates statistical research into Benrose, realistic portrayals of the daily lives of overburdened caregivers. These illustrations can be utilized by case managers to provide more unique. Flexible, innovative, and diverse solutions to alleviate the intense emotional and physical stress experienced by caregivers. The development and reporting of research studies must achieve a balance between quantitative and qualitative methodology and provide an application for practical use. Read more
Planning for the Future Together in Culturally Diverse Families Making Everyday Care Decisions The stress of providing long-term care to a relative with a cognitive impairment (eg. dementia) is often compounded by the difficulties encountered when making care decisions on behalf of the individual (ie. care receiver). This article describes research within culturally diverse families that explores decision making in everyday care from the perspective of both the caregiver and the care receiver. Our findings suggest that persons with cognitive impairments are able to express preferences for care, and that there are more similarities than differences across culturally diverse families. Read more
Circumstances Leading to Placement A Difficult Caregiving Decision Due to advances made in medicine and healthcare, older adults are living longer but enduring problems with physical functioning and health over longer periods of time. In addition, the percentage of older adults with cognitive impairments is increasing. Caregiving duties, which decades ago lasted for months, now last for years. This long-term strain of caring for an older adult who is physically and/or cognitively impaired may lead many caregivers to feel frustrated, angry, overwhelmed, and isolated. As a result of this stress many caregivers resort to nursing home placement. The Caregiver Options Program and Evaluation research project was undertaken to provide service options to participating caregivers to alleviate some of the debilitating stress associated with caregiving and postpone institutionalization. Results of logistic regression indicate the predictors of nursing home placement were whether the caregiver felt she/he had provided good care, and whether the elder had a problem with household tasks and/or woke the caregiver or other family members up during the night. Findings suggest that elderly care receivers who are predominately low-to-middle income have a physical and/or cognitive impairment, along with their caregivers, need to be especially targeted for help by case managers early in the caregiving process before placement becomes the only alternative. Read more
Impact of Family Members on Nurse Assistants What Helps, What Hurts This qualitative study focuses on nurse assistant reports of both positive and negative behaviors exhibited by family members of cognitively impaired residents. The information reported is obtained from in-person interviews with 114 nurse assistants in 5 skilled nursing facilities (3 philanthropic, 2 proprietary) in Greater Cleveland, Ohio. Nurse assistants were predominantly female (89 percent), white (60 percent), with a mean age of 33, and had been caring for cognitively impaired nursing home residents for an average of five years. Content analyses of nurse assistants’ responses reveal five categories of family members’ positive behaviors and four categories of negative behaviors. This article focuses on these themes and suggests topics for educational interventions for family members and nurse assistants who care for cognitively impaired nursing home residents. Topics include coping with family members’ feelings of guilt and related behaviors, understanding longstanding family relationship issues, and understanding possible reasons for decisions family members make regarding care of their relatives. Read more
Decision-Making for Persons with Cognitive Impairment and Their Family Caregivers Despite the large number of persons affected by cognitive impairment, very little is known about how they and their families make choices and decisions about everyday living and long-term care. Moreover, few studies have examined the concept of consumer direction, particularly the ability of cognitively impaired persons to delegate decision-making to other persons. This study explored decision-making through personal interviews with 51 respondent pairs, or dyads (i.e., the cognitively impaired person and the family caregiver). Results suggest that persons with mild to moderate cognitive impairment are able to answer questions about their preferences for daily care and to choose a person, usually a spouse or adult child, to make a variety of decisions on their behalf. By recognizing both voices—those of the care receiver and the family caregiver—we can enhance future research and practice, foster the development of consumer direction in long-term care, and advance public policy to support caregiving families. Read more
Case Management for Caregivers This article originally was prepared as a resource guide to assist the nation's Area Agencies on Aging as they begin developing or expanding services for the caregivers of older adults. A seminal question they face is how to provide case management service for this particular target population. The article reviews the literature on case management service generally, including its goals, functions, models, and outcomes. Its primary purpose, however, is to explicate the specific issues for providers to consider when planning and implementing case management service for caregivers. The article concludes with recommendations based on the results of evaluation research to maximize the benefits of caregiver services. Read more
