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Purpose: Individuals with dementia (IWDs) face particular challenges in managing and coping with their illness. The experience of dementia may be affected by the etiology, stage, and severity of symptoms, preexisting and related chronic conditions, and available informal and formal supportive services. Although several studies have examined particular features of IWD's illness experience, few draw upon a conceptual model that outlines the global illness experience and the resulting stressors that commence with symptom onset, proliferate over time, and continue through the later stages of cognitive loss. Building on the work of Pearlin and colleagues (1990, Caregiving and the stress process: An overview of concepts and their measures. "The Gerontologist," 30, 583-594), this article proposes a stress process model (SPM) for IWDs that conceptualizes and examines the illness experience of IWDs. Implications: The proposed SPM for IWDs serves as a guide to (a) consider and understand the short- and long-term complexities of the illness experience for IWDs, (b) investigate specific hypotheses by outlining key stressors in the illness experience and by positing relationships among stressors and outcomes, and (c) help inform the development of interventions to prevent or reduce the negative stressors and enhance the positive experiences of living with a dementing illness.

Purpose: Research underscores how autonomy and decision-making involvement may help to enhance the quality of life of older adults; however, individuals with dementia are often excluded from decision making that is related to their daily functioning. In this study we use a modified version of the Stress Process Model to consider the stress process of individuals with chronic illness, and in particular to explore the predictors of decision-making involvement among individuals with dementia (n = 215). Design and Methods: We collected data from individual with dementia (IWD)-family caregiver dyads. Relying primarily on data from the IWD, we used hierarchical multiple regression analysis to determine the predictors of the IWD's decision-making involvement. Results: Results indicate that individuals who report more decision-making involvement are younger, female, have more education, have a nonspousal caregiver, have fewer months since their diagnosis, exhibit fewer problems with activities of daily living and fewer depressive symptoms (based on caregiver report), and place more importance on autonomy/self-identity. Implications: In our discussion we examine the importance of autonomy and impairment levels for understanding the decision-making involvement of persons with dementia. (Contains 1 footnote, 2 figures, and 4 tables.)

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 [alpha] =0.84; caregiver [alpha] =0.89) and positive dyadic interaction (patient [alpha] =0.86; caregiver [alpha] =0.85). 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. (Contains 2 footnotes and 5 tables.)

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.

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.

Adapts Stress Process Model (SPM) of family caregiving to examine predictors of depression in a sample of caregivers (N=133) with demented relatives residing in suburban skilled nursing facilities. Results suggest that caregiver depression is closely linked to how well resident and caregiver adjust to the nursing home environment. (BF)

Examined consequences of institutionalization for 555 caregivers of dementia patients. Consistent with stress process model, institutionalization was hypothesized to have large impact on primary effects of caregiving and lesser influence on secondary effects and well-being. Following placement, caregivers experienced relief from primary effects of caregiving and improved well-being, whereas other indicators of stress remained unchanged. (Author/NB)

Presents reanalysis of previously reported study (Zarit et al.,1987) with family caregivers (n=113) of dementia patients using the method of prediction analysis. Compared with subjects on a waiting list or enrolled in support groups, caregivers in individual and family counseling were more likely to have successful outcomes. Recommends previous reports on caregiving interventions be reevaluated. (Author/ABL)

This analysis examines the ability of persons with mild to moderate dementia (MMSE scores 13--30 and/or a dementia diagnosis) to provide consistent and accurate information. Data come from interviews with 213 persons with dementia (PWDs) and their family caregivers (CG). Consistency was assessed by determining agreement between responses provided by PWDs during two in-person interviews. Accuracy was assessed by determining agreement between PWD responses and CG responses. Overall, PWDs provided consistent and accurate responses to fact-based questions and were consistent in their responses to state-dependent items. Less impaired respondents were more consistent in their responses to fact-based items. Among respondents with more severe impairment, there were no significant differences in consistency by question type. This work responds to the need to gain a better understanding of the opinions and experiences of dementia and offers further evidence that many PWDs can provide consistent and accurate information. Findings support increased involvement of individuals with dementia in research and care planning., Keywords: accuracy; caregiving dyad; reliability 341 ArticleConsistency of information from persons with dementia An analysis of differences by question type SAGE Publications, Inc.200810.1177/1471301208093288 Patricia A.Clark Margaret Blenkner Research Institute, The [...]

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. doi:10.1300/J031v18n03_09 [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: Website: [c]2006 by The Haworth Press, Inc. All rights reserved.] KEYWORDS. Respite care, home-based care, community-based care, family caregivers, service providers

Abstract This study examines the ability of persons with cognitive impairment (n = 111) to provide consistent and accurate responses to questions about demographic characteristics and basic preferences. Persons with [...]

Background and Objectives The Remote Assessment and Dynamic Response (READyR) Program was developed in order to address the current lack of early-stage dementia care planning programs that assess the care needs of persons with dementia. The goal was to create a program informed by care values and ongoing ecologically valid data. The objectives of this study are to describe the development and design process of the READyR Program, and to evaluate the utility of the READyR Program for identifying dementia-related care needs. Research Design and Methods A prototype of the web-based READyR Program tool was first created using digital activity data that were collected by previous studies using a platform of multimodal sensors installed in the homes of older adult couples with and without dementia. Digital activity data were then mapped onto potential care values (e.g. safety & autonomy) to create a values-based needs assessment that is tailored to the individual care dyad. Next, evaluation of the READyR Program by 11 professional dementia care coordinators and case managers (across 3 semistructured focus groups) was used to explore the utility of READyR for assessing dementia-related needs. Qualitative description using conventional content analysis was used to iteratively code focus group data and to describe prevalent themes. Results Prevalent focus groups themes included barriers to (e.g. family relationship strain) and facilitators of (e.g. tailored assessments) the optimal process for assessing dementia-related care needs by care coordinators, as well as advantages to (e.g. providing new objective insights into function, and routines) and disadvantages of (e.g. bringing up new questions about care) incorporating the remote monitoring data into a values-based needs assessment. Discussion and Implications READyR has the potential to help family members, as well as care coordinators and providers, gain insight into the values-based care needs of persons with early-stage dementia. Clinical Trials Registration Number: NCT04542109 [ABSTRACT FROM AUTHOR]

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.