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
Caregiving as a Dyadic Process Perspectives from Caregiver and Receiver Most family caregiving research has relied on the perspective of the caregiver but has not systematically examined the views and opinions of the elder who is receiving care. The present study examined 63 caregiving dyads to determine how the responses of each member had an impact on the well-being of the other member of the dyad. Caregiver relationship strain predicted his or her own depression and negative health, but no significant association was found between caregiver and care recipient outcomes. Multilevel modeling was used to assess the level of dyadic discrepancy over the care recipient’s needs and appraisal of caregiving difficulties. Results indicate that there is little disagreement over the care recipient’s needs, but a significant amount of variation in how much the care recipient and caregiver agree on their appraisals of caregiving difficulties. Relationship strain perceived by the caregiver, but not the care recipient, was significantly associated with this disagreement. Read more
Family Satisfation with Nursing Home Care for Relatives with Dementia Families of residents with dementia from five nursing homes were interviewed to assess if they believed improvements were needed in the care provided to their relatives. Quality of care was assessed in a variety of service and staff areas that factored into two domains of care: (a) environmental and administrative services and (b) direct care. Families who perceived significant improvements were needed in environmental and administrative services had more negative interactions with staff, perceived nurse assistants as being insensitive, and helped relatives with more activities of daily living (ADL). With respect to direct care, families perceived significant improvements were needed when they had more negative interactions with staff and helped their relatives with more ADL. These findings highlight the importance of promoting positive family-staff interactions, providing direct care in a sensitive manner, and exploring the reasons why families get involved in ADL to improve family satisfaction with care. Read more
The Stress Process of Family Caregiving in Institutional Settings Purpose: This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers (n = 133) with demented relatives residing in suburban skilled nursing facilities. Design and Methods: We interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. We used block-wise regression analyses to determine the predictors of caregiver depression. Results: Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident–caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. Implications: These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes. Read more
Evaluating the Ohio Elder Abuse and Domestic Violence in Late Life Screening Tool and Referral Protocol This article describes the evaluation processes employed in the Ohio project to develop and test screening tools and referral protocols on elder abuse and domestic violence. Three focus groups and a Roundtable of experts were utilized to develop the materials in the first year. In the second year, a formal quantitative evaluation that involved 160 practitioners in Ohio was implemented to review the materials and to use them with clients. Findings from the quantitative evaluation were incorporated to make changes that led to a final document that was much simpler, less lengthy, and more relevant to beginning practitioners. Read more
Application of Elder Abuse Screening Tools and Referral Protocol Techniques and Clinical Considerations This article discusses the techniques and clinical considerations in using elder abuse screening tools and referral protocol recently developed by The Benjamin Rose Institute and a multidisciplinary statewide roundtable for Ohio service providers. Various constructs of abuse on these tools are matched with case situations to demonstrate the practitioner's clinical decision-making process with reference to identifying abuse and selecting an appropriate referral source. In addition, clinical limitations and ethical dilemmas for practitioners in application of the tools and referral protocol are considered. Read more
Trying to Continue to do as Much as They Can do Theoretical Insights Regarding Continuity and Meaning Making in the Face of Dementia Face-to-face interviews were conducted with six individuals in the early stages of a dementia. Interviews were initiated to explore the day-to-day experiences of dementia. The commonality that emerged across the interviews was participants’ desire to maintain continuity with their previous way of life while coping with dementia-necessitated changes. We conceptualized this commonality in terms of Atchley’s (1989) articulation of continuity theory and Park and Folkman’s (1997) framework of meaning making. This research highlights how, despite their impairment, individuals with dementia not only are able but strive to maintain continuity and to make meaning of their situations. The results show that it is possible to gain insight from those in the early stages of dementia; the underlying practical and clinical implication is the importance of encouraging the maintenance of personhood by listening to the desires and concerns of those with dementia. Read more
Are Persons with Cognitive Impairment Able to State Consistent Choices Purpose: This study examined the decision-making capacity of persons with cognitive impairment with respect to their everyday care preferences and choices. This is the first in a series of articles to report on findings from a larger study that examines choice, decision making, values, preferences, and practices in everyday care for community-dwelling persons with cognitive impairment and their family caregivers. Design and Methods: Fifty-one respondent pairs, or dyads, were interviewed, that is, persons with cognitive impairment (n = 51) and their family caregivers (n = 51). All persons with cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. The family caregiver was interviewed once. Results: Persons with mild to moderate cognitive impairment (i.e., Mini-Mental State Exam scores 13–26) are able to respond consistently to questions about preferences, choices, and their own involvement in decisions about daily living, and to provide accurate and reliable responses to questions about demographics. Implications: Including the perspective of persons with cognitive impairment in both research and practice has the potential to enhance their autonomy and improve their quality of life. Read more
