Elia E. Femia

A future for family care and dementia intervention research? Challenges and strategies

Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.

Behavioral and psychosocial interventions for family caregivers.

Characteristics of effective approaches and flaws in study design.

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.

Behavioral and psychological symptoms of dementia and caregivers' stress appraisals: Intra-individual stability and change over short-term observations

Dementia is commonly associated with memory loss, but Behavioral and Psychological Symptoms of Dementia (BPSD) such as disruptive behaviors, agitation, and problems with mood, usually have a more significant impact on caregivers’ stress. It is known that BPSD and caregivers’ stress reactions vary in frequency over the long-term course of dementia, however little is known about the variability over the short-term. The current study included 85 people with dementia and their primary caregivers assessed over three months. Caregivers used a 24-hour log on multiple, consecutive days to report behavioral symptoms of dementia on seven domains of behavior, as well as their stress reactions for each domain. Using latent growth curve analysis, most BPSD and caregiver stress appraisals were found to be, on average, stable over the three-month time frame. For many BPSD and stress appraisal models, however, intra-individual differences in rate of change were significantly different from the mean trend, indicating behaviors and stress are not stable over three months when assessed at the level of the individual. Covariates were used to explain individual differences in rates of change; however few variables were significantly associated with intra-individual short-term change over time.

Prevalence, incidence and correlates of depression in the oldest old: The OCTO study

While there has been extensive research on depression in later life, few studies have focused on the prevalence of symptoms and patterns of change over time among the oldest old. This paper reports on a longitudinal study of a population-based sample of older people initially aged 84 to 90. Participants were interviewed at two-year intervals over a six-year period of time. From an initial population base of 400, 324 people participated in the initial survey, 254 of whom provided information on depressive symptoms. Using a short form of the CES-D we found prevalence of significant depressive symptoms to range between 43 and 50% for the four times of measurement. Incidence of clinically significant symptoms ranged between 9 and 16% between measurement periods, while some people who were previously depressed showed improvement. A multivariate model indicated that depressive symptoms were related to functional impairments and disabilities but these effects were mediated by mastery beliefs. These findings indi...

The Effects of Adult Day Services on Family Caregivers’ Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study

PURPOSE We examine the effects of use of adult day service (ADS) by caregivers of individuals with dementia (IWD) on daily stressors, affect, and health symptoms. Participants were interviewed for 8 consecutive days. On some days, the IWD attended an ADS program and on the other days caregivers provide most or all of the care at home. METHODS Participants were 173 family caregivers of IWDs using an ADS program. Daily telephone interviews assessed care-related stressors, noncare stressors, positive events, affect, and health symptoms. Multilevel models with data nested within persons were used to examine effects of ADS use on daily stressor exposure, affect, and health symptoms. RESULTS Caregivers had lower exposure to care-related stressors on ADS days, more positive experiences, and more noncare stressors. ADS use lowered anger and reduced the impact of noncare stressors on depressive symptoms. IMPLICATIONS The findings demonstrate that stressors on caregivers are partly lowered, and affect is improved on ADS days, which may provide protection against the effects of chronic stress associated with caregiving.

Behavioral and psychological symptoms of dementia: The effects of physical activity at adult day service centers

Adult day services (ADS) are an increasingly popular option for caregivers of people with dementia, but there is little research on the effects of activities on the behavior and mood of the client. This study examines participation by 94 individuals in different types of adult day-care activities and their association with changes in behavior and psychological symptoms of dementia (BPSD) for the client during a three-month span. Three domains of BPSD were examined: restless behaviors, mood behaviors, and positive behaviors. Using growth curve modeling, results show that the restless and mood behavior domains, on average, were stable over three months, whereas positive behaviors increased. For all three behavior domains there were individual differences in average level of BPSD. Average rate of change for individuals also varied from the mean for restless and mood behaviors. Physical activities, social activities, engaging activities, and watching and listening activities, along with a day-care dosage variable, were used as covariates to explain these individual differences in change. Engaging activities explained some of the individual variance for restless behaviors; as individuals increased one increment in engaging activities, they had fewer restless behavior problems over time. These results suggest that some features of programming may be related to improvements in restless behavior.

How many elders receive assistance? : A cross-national comparison

Objectives:To examine models of informal support received by elders in the United States and Sweden and to test whether differences in informal support appear to stem from demographic differences between the nations alone or whether cultural and historical differences must also be considered. Methods:Samples with similar functional dependence, age 75 and older in the United States (n= 4,677) and Sweden (n= 1,378), were used to model cross-national differences in the association between country, age, sex, potential availability of kin support, and receipt of informal assistance. Results:Patterns of informal help were higher in the United States than in Sweden but were qualified by higher order interactions among age, sex, and availability of kin support. Discussion:Cultural differences predating current policies in both countries appear to influence informal support over and above what can be accounted for by demographic differences alone.

Kin relationship of caregivers and people with dementia: stress and response to intervention

This study examined the effects of kin relationship on response to use of adult day services (ADS) on feelings of overload, depressive symptoms, and positive affect for family caregivers of people with dementia.

Fidelity and acceptability of an adaptive intervention for caregivers: An exploratory study

Objective: There has been growing interest in providing tailored or adaptive interventions to family caregivers as a way of addressing their heterogeneity of risk factors and other needs. A particular challenge in an adaptive study is to implement the individualized intervention protocol as planned (program fidelity). This study explores the fidelity of implementation of an adaptive intervention for family caregivers of persons with dementia and its acceptability to caregivers. Method: Using a sample of 35 caregivers of person with dementia who participated in a program development study, we gathered information on acceptability and fidelity of the program from multiple sources, including caregiver and counselor reports and ratings of recordings of sessions. Results: Findings show that caregivers have high levels of acceptance of the intervention plan and high ratings of satisfaction with the program. Ratings of satisfaction and counselor competence were not associated with the amount of treatment provided. Ratings by counselors and independent raters found good fidelity for two of the three program domains. Discussion: The results demonstrate that trained counselors can follow a tailored intervention plan and that caregivers’ experience of the program did not differ depending on how much intervention was provided. A next step is to determine how an adaptive protocol would affect caregiver outcomes.