Carol J. Whitlatch

The structure of risk factors and outcomes for family caregivers: implications for assessment and treatment.

Purpose: We examined the associations among risk factors (e.g., behavioral problems, family conflict) and outcomes (e.g., overload, depression) commonly used in the research literature in order to inform the design of caregiver assessment and interventions. Methods: A sample of 67 caregivers caring for a family member in the middle stages of dementia were assessed on 15 risk factors and six outcome measures. Results: Risk factors were at best only moderately correlated with one another, suggesting their relative independence. Outcome measures showed somewhat higher correlations with one another, but participants varied in terms of the number and type of outcomes that were elevated. Multivariate results showed that risk factors differed in their contribution to models, predicting various outcomes. Implications: Caregivers possess unique combinations of risk factors and outcomes that suggest the need for individualized or tailored interventions. Designing an effective caregiver assessment and corresponding targeted intervention requires careful planning and selection of appropriate risk factors and outcomes.

Accuracy and consistency of responses from persons with cognitive impairment

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 cognitive impairment were interviewed twice within a week using a parallel interview to determine stability and accuracy of responses. Family caregivers were interviewed once within the same time period. In general persons with mild to moderate cognitive impairment (i.e. MMSE scores from 13-26) were accurate and reliable in their ability to respond to questions about demographics and basic preferences. These results add further support to past findings that persons with cognitive impairment can be active participants in both research and practice.

Stress Process Model for Individuals With Dementia

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 IWDs 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.

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 Scales 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. Socio-demographic, 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.

Shared decision-making in dementia: A review of patient and family carer involvement:

This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

Family Satisfaction 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 familystaff interactions, providing direct care in a sensitive manner, and exploring the reasons why families get involved in ADLto improve family satisfaction with care.

Consistency of information from persons with dementia An analysis of differences by question type

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.

Predictors of quality of life for individuals with dementia Implications for intervention

Although a growing number of investigations examine the lived experience of individuals with dementia (IWDs), few draw upon a conceptual model to explore inter-relationships among background characteristics, stressors, and outcomes (Menne, 2006). This study is guided by a conceptual model that draws upon the broader stress literature to examine predictors of IWD quality of life. Relying primarily on IWD self-reported data (n = 211), multivariate ordinary least squares regression analysis was used to determine the predictors of IWDs’ quality of life. Results indicate that IWDs who report poorer quality of life are more likely to be African-American, have a non-spousal caregiver, have more depressive symptoms, be less involved in daily decision-making, and have more negative strain with their caregiver. These findings are discussed in the context of current and practical interventions that address the strengths and needs of IWDs and their family caregivers.

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.

Activity Preferences of Persons With Dementia

Older adults prefer to engage in a variety of leisure and recreational activities. These activities vary in type depending on the older adults level of physical and mental ability. There is little empirical evidence documenting the preferred activities of older adults with dementia. The present study examines the self-reported activity preferences of 216 persons with dementia and the relationship of these activities to demographic characteristics and well-being outcomes. Results demonstrate hypothesized demographic differences and reinforce the importance of engaging persons with dementia in activities that they find meaningful.