How Well Do Family Caregivers Know Their Relatives’ Care Values and Preferences Purpose: This study examines the psychometric properties of the Values and Preferences Scale (VPS) and compares the responses of 267 persons with cognitive impairment with the responses of their family caregivers to determine the accuracy of the caregivers’ perceptions of their relatives’ care values and preferences. Design and Methods: Exploratory factor analyses examined whether a consistent factor structure could be found for the VPS for both persons with cognitive impairment (PWCIs) and family caregivers. Analyses also determined whether family caregivers were accurate in their perceptions of their relative’s care preferences. Results: Results indicated that the VPS was best divided into four factors or subscales (i.e., Burden, Safety/Quality of Care, Autonomy, and Social Interactions) all of which were found to have adequate internal consistency for persons with cognitive impairment and family caregivers. Caregivers generally had a good sense of what preferences were most important to their relatives (i.e., issues of safety and quality of care), but often underestimated the importance of certain values and preferences. Implications: These findings support previous work suggesting that practitioners consider incorporating an assessment of val Read more
Informal Caregivers Communication and Decision Making Communicating about care preferences can improve the well-being of caregivers and care recipients. Read more
Decision-Making Involvement Scale for Individuals with Dementia and Family Caregivers This report describes the development and preliminary psychometric properties of the Decision-Making Involvement Scale for individuals with dementia and family caregivers. Data were collected from 217 individuals with dementia and their respective caregivers. Principal axis factor analysis, Kendall τ, and Pearson correlations were used to determine the Decision- Making Involvement Scale’s psychometric properties, mean differences of caregiver and individual with dementia, and the relationship between scores of Decision-Making Involvement Scale and measures of well-being. Analyses support a reliable, 1-factor solution of the Decision-Making Involvement Scale for both individuals with dementia and caregivers. Sociodemographic, impairment, and well-being variables are differentially related to the perceptions of how involved the individual with dementia is in decision making. The Decision-Making Involvement Scale provides useful information about daily decision making of an individual with dementia, and it shows promise as a means for understanding the relationship between decision-making involvement and well-being of individuals with dementia and caregivers. Read more
Dyadic Relationship Scale A Measure of the Impact of the Provision and Receipt of Family Care Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient a = .84; caregiver a = .89) and positive dyadic interaction (patient a = .86; caregiver a=.85). The analysis supported the DRS’s construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad. Read more
Caregiving and Caring Caregiving is the act of providing assistance or care to a family member, friend, or client with a chronic illness or disability so that she or he can maintain an optimal level of independence with dignity. This assistance can be instrumental or hands-on, affective, financial, or otherwise of value or necessity to the care receiver. Caregiving varies in its intensity and duration, ranging from 1 hour per day, or one weekend per year, to 24 hours a day for years at a time. Caregiving can occur within a community or home setting, an institutional or assisted living setting, or from a distance. Although providing care can be stressful to both caregivers and care recipients, the effects on caregivers can be long term, lasting for many years after care responsibilities have ended. Read more
Family and Friends As Respite Providers Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California’s Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use. Read more
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
