Dementia Family Caregivers Research Articles

Commitment to personal values and guilt feelings in dementia caregivers.

Caregivers' commitment to personal values is linked to caregivers' well-being, although the effects of personal values on caregivers' guilt have not been explored to date. The goal of this study is to analyze the relationship between caregivers´ commitment to personal values and guilt feelings. Participants were 179 dementia family caregivers. Face-to-face interviews were carried out to describe sociodemographic variables and assess stressors, caregivers' commitment to personal values and guilt feelings. Commitment to values was conceptualized as two factors (commitment to own values and commitment to family values) and 12 specific individual values (e.g. education, family or caregiving role). Hierarchical regressions were performed controlling for sociodemographic variables and stressors, and introducing the two commitment factors (in a first regression) or the commitment to individual/specific values (in a second regression) as predictors of guilt. In terms of the commitment to values factors, the analyzed regression model explained 21% of the variance of guilt feelings. Only the factor commitment to family values contributed significantly to the model, explaining 7% of variance. With regard to the regression analyzing the contribution of specific values to caregivers' guilt, commitment to the caregiving role and with leisure contributed negatively and significantly to the explanation of caregivers' guilt. Commitment to work contributed positively to guilt feelings. The full model explained 30% of guilt feelings variance. The specific values explained 16% of the variance. Our findings suggest that commitment to personal values is a relevant variable to understand guilt feelings in caregivers.

Measuring Ambivalent Feelings in Dementia Family Caregivers: The Caregiving Ambivalence Scale.

Ambivalence has been described as simultaneous positive and negative emotional experiences. Although ambivalent feelings are often reported by dementia family caregivers, the effect of these feelings on caregivers' mental health has not been studied. Furthermore, the measurement of ambivalence specific to caregiving situations has not been studied. The aims of this study are to analyze the psychometric properties of the Caregiving Ambivalence Scale (CAS) and, drawing upon the stress and coping model, to test whether ambivalent feelings significantly contribute to caregivers' distress. Participants were 401 dementia family caregivers. Face-to-face interviews were conducted which included measures of ambivalence, depressive (CES-D) and anxious symptomatology (POMS), stressors (disruptive behaviors subscale of the RMBPC), and sociodemographic information. Results from exploratory, parallel, and confirmatory factor analyses suggest that the CAS has a unidimensional structure, explaining a 64.26% of the variance of ambivalent feelings. Good reliability and validity indexes were found, including a Cronbach's alpha of .86. The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology, and frequency and reaction to disruptive behaviors. Ambivalent feeling scores significantly contributed to the explanation of caregivers' depressive and anxious symptoms after controlling for sociodemographic and stressor variables. The CAS shows good psychometric properties that recommend its use as a measure of ambivalent feelings in caregivers and appears to be a relevant variable for understanding caregivers' mental health.

The Impact of Dementia on Family Caregivers: What Is Research Teaching Us?

Dementia family caregiving has been the focus of research for decades. Much has been learned about the negative impact of caregiving as well as characteristics that may be protective. This paper explores themes in caregiving pertinent to clinicians and researchers working with dementia family caregivers: the psychological, subjective, and physical outcomes of caregiving, ways in which dementia alters relationships between the patient and caregiver, and strategies for improving outcomes for caregivers. Suggestions for next steps in research and clinical care are made.

Experiences and Learning Needs of African American Family Dementia Caregivers.

Dementia family caregivers display significant rates of psychological and physical symptoms. African Americans (AAs) are disproportionately affected by dementia. African American caregivers display unique patterns of symptomology and responses to interventions designed to promote caregiver well-being. This study analyzed qualitative focus group data from 32 AA caregivers to explore how issues of race and culture may be incorporated into a culturally sensitive intervention for AA dementia family caregivers. Caregivers were asked scripted questions about their caregiving experiences and to suggest alterations to an existing psychoeducation program. Analysis revealed 4 key themes: the tradition of family care, caregiving and caregiving issues, culturally appropriate care, and navigating without a map. Suggestions for an educational program included a focus on developing caregiver skills and knowledge for caregiving, promotion of self-care, and reflection on the AA family and community as resources for care.

Managing Your Loved One’s Health: Development of a New Care Management Measure for Dementia Family Caregivers

The National Alzheimer's Plan calls for improving health care for people living with dementia and supporting their caregivers as capable health care partners. Clinically useful measurement tools are needed to monitor caregivers' knowledge and skills for managing patients' often complex health care needs as well as their own self-care. We created and validated a comprehensive, caregiver-centered measure, Managing Your Loved One's Health (MYLOH), based on a core set of health care management domains endorsed by both providers and caregivers. In this article, we describe its development and preliminary cultural tailoring. MYLOH is a questionnaire containing 29 items, grouped into six domains, which requires <20 min to complete. MYLOH can be used to guide conversations between clinicians and caregivers around health care management of people with dementia, as the basis for targeted health care coaching, and as an outcome measure in comprehensive dementia care management interventions.

DYADIC QUALITY OF LIFE: DIFFERENTIAL DETERMINANTS FOR HOSPITALIZED PATIENTS WITH DEMENTIA AND THEIR FAMILY CAREGIVERS

DYADIC QUALITY OF LIFE: DIFFERENTIAL DETERMINANTS FOR HOSPITALIZED PATIENTS WITH DEMENTIA AND THEIR FAMILY CAREGIVERS

MANAGING YOUR LOVED ONE’S HEALTH: DEVELOPMENT OF A NEW CARE MANAGEMENT MEASURE FOR DEMENTIA FAMILY CAREGIVERS

MANAGING YOUR LOVED ONE’S HEALTH: DEVELOPMENT OF A NEW CARE MANAGEMENT MEASURE FOR DEMENTIA FAMILY CAREGIVERS

Holding on while letting go: trauma and growth on the pathway of dementia care in families

ABSTRACTObjectives: Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives.Method: This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis.Results: One superordinate theme, navigating ‘system’ control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting; authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange.Conclusions: Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.

Professional discipline and support recommendations for family caregivers of persons with dementia.

Family caregivers of persons with dementia often require support services to help ease the challenges of providing care. Although the efficacy of some dementia caregiver interventions seems apparent, evidence indicating which types of protocols can best meet the diverse needs of individual families is not yet available. Because of this gap, families must often turn to professionals for such guidance, but it remains unknown whether professionals from different disciplines are more inclined to recommend particular types of services than others. This study assessed whether recommendations of supportive interventions to hypothetical dementia family caregivers differed by professional discipline. In a cross-sectional survey design, a convenience sample of 422 dementia care professionals across the USA viewed up to 24 randomly selected, hypothetical scenarios that systematically varied characteristics of persons with dementia and their caregivers. For each scenario, 7 possible intervention recommendations were rated. A total of 6,890 scenarios were rated and served as the unit of analysis. General linear models revealed that discipline was often a stronger predictor of how likely professionals were to recommend dementia caregiver interventions than caregiver, care recipient, or other professional characteristics. Psychotherapists tended to recommend psychoeducation more than other professionals, while those in medicine were more likely to recommend training of the person with dementia and psychotherapy. The heterogeneity in recommendations suggests that the professional source of information influences the types of support families are directed toward. Empirical evidence should inform these professional judgments to better achieve person-centered care for families.

Effect of Moderate to Vigorous Physical Activity Intervention on Improving Dementia Family Caregiver Physical Function: A Randomized Controlled Trial.

ObjectiveAlzheimer’s disease and related dementias (ADRD) affect more than five million Americans and their family caregivers. Caregiving creates challenges, may contribute to decreased caregiver health and is associated with $9.7 billion of caregiver health care costs. The purpose of this 12 month randomized clinical trial (RCT) was to examine if the Enhancing Physical Activity Intervention (EPAI), a moderate to vigorous physical activity (MVPA) treatment group, versus the Caregiver Skill Building Intervention (CSBI) control, would have greater: (1) MVPA adherence; and (2) physical function.MethodsCaregivers were randomly assigned to EPAI or CSBI (N=211). MVPA was assessed using a self-report measure; and physical function was objectively assessed using two measures. Intention-to-treat analyses used descriptive, categorical and generalized estimating equations (GEE), with an exchangeable working correlation matrix and a log link, to examine main effects and interactions in change of MVPA and physical function over time.ResultsAt 12 months, EPAI significantly increased MVPA (p=<0.001) and number of steps (p=< .01); maintained stable caregiving hours and use of formal services; while CSBI increased hours of caregiving (p=<0.001) and used more formal services (p=<0.02). Qualitative physical function data indicated that approximately 50% of caregivers had difficulties completing physical function tests.ConclusionThe EPAI had a stronger 12 month effect on caregiver MVPA and physical function, as well as maintaining stability of caregiving hours and formal service use; while CSBI increased caregiving hours and use of formal services. A study limitation included greater EPAI versus CSBI attrition. Future directions are proposed for dementia family caregiver physical activity research.

Predicting perceived medication-related hassles in dementia family caregivers.

Objective This study examined predictors of medication administration hassles reported by intergenerational dementia family caregivers. Methods A sample of 53 women who aided a cognitively impaired older adult with healthcare and who identified as inter-generational caregivers provided self-report medication management and psychosocial data. Results Hierarchical multiple regression analyses revealed that six independent variables hypothesized for this model, the total number of prescription medications managed by caregivers, educational attainment, care-recipient functional impairment, care-recipient cognitive impairment, caregiver depressive symptomatology, and self-reported feelings of preparedness for the caregiving role together significantly predicted caregiver medication administration hassles scores F(1, 48) = 4.90, p = .032, and accounted for approximately 25% of the variance of self-reported hassles (adjusted R2 = .247). Discussion Future interventions may reduce medication-related hassles by providing psychoeducation about healthcare, medication management, and strategies for coping with care-related stressors and depressed mood.

Validation of the Measure of Unmet Need For Dementia Family Caregivers For Korean Sample

Validation of the Measure of Unmet Need For Dementia Family Caregivers For Korean Sample

Applicability of the pre-death grief concept to dementia family caregivers in Asia.

ObjectivePre‐death grief is prevalent among dementia family caregivers. When unaddressed, it produces adverse outcomes. With its research primarily conducted in Caucasians, its applicability to non‐Caucasians is uncertain. We explore the existence and the characteristics of pre‐death grief in a multi‐ethnic Asian population using an established pre‐death grief scale—Marwit–Meuser Caregiver Grief Inventory (MM‐CGI).MethodsSeventy‐two dementia family caregivers were recruited from a tertiary hospital. Existence of pre‐death grief was shown by its measurability on MM‐CGI, together with good internal consistency reliability and construct validity. Characteristics of pre‐death grief were explored through multivariate linear regression of MM‐CGI and by comparing MM‐CGI scores with those from the original US study using one‐sample T‐test.ResultsIn the Asian context, pre‐death grief was measurable in a reliable and valid manner. Risk factors of pre‐death grief included caring for patients with severe dementia, spousal relationship and secondary or below education. Influence of culture was palpable—Asians had more worries and felt isolation, and certain ethnicity showed more pre‐death grief.ConclusionsPre‐death grief is applicable even to the non‐Caucasian population. It bears much similarity to that in Caucasians. Yet, its expression is modified by culture. Clinicians working with non‐Caucasian populations need to be sensitive to its presence and to the influence of culture on its expression. © 2015 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.

Evaluation of a Short-Term Telephone-Based Cognitive Behavioral Intervention for Dementia Family Caregivers

ABSTRACTThis study evaluates a short-term telephone-based Cognitive Behavioral Therapy (CBT) for family caregivers. The study goal was to analyse whether caregivers of the intervention group reported better well-being and health at post treatment than participants of an untreated control group and an attention control group (treated with progressive muscle relaxation [PMR]), and whether these benefits maintained at 6-month follow-up. Participants (n = 229) were assigned to the study groups after baseline assessment. Most were female (82.2%), with a mean age of 62 years. As outcome measurements, the study assessed depressive symptoms, body complaints, emotional well-being, and perceived health. The intervention group showed short-term effects in improving well-being when compared with the PMR and the untreated control groups. Furthermore, in comparison to the untreated controls CBT was effective in decreasing body complaints at post treatment and in improving perceived health at 6-month follow-up. Improvements for CBT in comparison to the PMR group could be shown for depressive symptoms at 6-month follow-up. CBT for family caregivers is applicable via telephone and has shown promising short and long-term effects. A prolongation of the intervention might enhance the effects.

The Sociocultural Context of Caregiving Experiences for Vietnamese Dementia Family Caregivers.

The goal of this qualitative study was to describe the beliefs and experiences of Vietnamese caregivers caring for a family member with dementia and to elicit their ideas about promising interventions. We recruited 10 caregivers from support groups, the Alzheimer's Association, and local community-based organizations in Northern California. We conducted semi-structured in-depth interviews with all caregivers, as well as a focus group to obtain ideas about supportive strategies. Several themes emerged from the data: (1) Filial piety was influential in caregiving; (2) A sense of loss/grief or trauma was pervasive; and (3) Caregivers had clear sources of stress and sources of support. An overarching theme underlying these three topics was that cultural beliefs, values, and expectations impacted the caregiving experience. Suggestions for promising interventions included education, language-congruent and/or telephone support groups, case management, inclusion of the care recipient in the intervention, and importance of credibility of the intervention. It also may be valuable to include an understanding of cultural values and promotion of spirituality and religion as key components. Findings highlight targets for dementia caregiver interventions to reduce burden and distress in an understudied population.

Cognitive-behavioral therapy (CBT) versus acceptance and commitment therapy (ACT) for dementia family caregivers with significant depressive symptoms: Results of a randomized clinical trial.

The differential efficacy of acceptance and commitment therapy (ACT) and cognitive-behavioral therapy (CBT) for dementia family caregivers' is analyzed through a randomized controlled trial. Participants were 135 caregivers with high depressive symptomatology who were randomly allocated to the intervention conditions or a control group (CG). Pre-, postintervention, and follow-up measurements assessed depressive symptomatology, anxiety, leisure, dysfunctional thoughts, and experiential avoidance. Depression: Significant effects of interventions compared with CG were found for CBT (p < .001, d = 0.98, number needed to treat [NNT] = 3.61) and ACT (p < .001, d = 1.17, NNT = 3.53) at postintervention, but were maintained only at follow-up for CBT (p = .02, d = 0.74, NNT = 9.71). Clinically significant change was observed in 26.7% participants in CBT, 24.2% in ACT, and 0% in CG. At follow-up, 10.53% in CBT and 4% in ACT were recovered (0% CG). Anxiety: At postintervention, ACT participants showed lower anxiety than CBT participants (p < .05, d = 0.50) and CG participants (p < .01, d = 0.79, NNT = 3.86), with no effects at follow-up. At postintervention, 23.33% in CBT, 36.36% in ACT, and 6.45% in CG showed clinically significant change. At follow-up, 26.32% in CBT, 36% in ACT, and 13.64% in CG were recovered. Significant changes at postintervention were found in leisure and dysfunctional thoughts in both ACT and CBT, with changes in experiential avoidance only for ACT. Similar results were obtained for ACT and CBT. ACT seems to be a viable and effective treatment for dementia caregivers.

CARES(®) Dementia Care for Families™: Effects of Online, Psychoeducational Training on Knowledge of Person-Centered Care and Satisfaction.

Challenges to intervention use among family caregivers of individuals with dementia include availability and timing of delivery. The current study sought to determine whether an online, psychoeducational intervention for dementia family caregivers, CARES(®) Dementia Care for Families™ (CARES for Families), improved and enhanced dementia caregivers' knowledge of person-centered care approaches. Forty-one family members completed pre- and posttest surveys that assessed improvement in dementia care knowledge, and multiple close- and open-ended items examined how the CARES for Families online modules benefited users at posttest. A paired t test demonstrated a significant and considerable increase in dementia care knowledge among family caregivers (p < 0.001); caregivers also indicated that CARES for Families' content, flexibility, and use of actual family caregivers and individuals with dementia in video care vignettes were strengths. The findings suggest that CARES for Families can offer an efficient supplement to holistic dementia care that gerontological nurses provide.

Effectiveness of a Fotonovela for Reducing Depression and Stress in Latino Dementia Family Caregivers

The clinical need to address stress and depression in Latino dementia caregivers (CGs) combined with low health literacy and less accurate knowledge of dementia motivated the development of a pictorial tool [called a fotonovela (FN)] to teach (a) coping skills for caregiver (CG) stress; (b) self-assessment of depression; and (c) encourage improved utilization of available resources. To test the effectiveness of the FN, 110 of 147 Latino CGs, who were randomly assigned to the Fotonovela Condition (FNC) or the Usual Information Condition (UIC), were included in the final analyses. Self-report measures were given at baseline and post intervention. Results showed that FNC CGs demonstrated significantly greater reductions in level of depressive symptoms than UIC CGs. A significant decrease in level of stress due to memory and behavioral problems exhibited by their loved ones was similar in both groups. The FNC CGs reported that the FN was more helpful and that they referred to it more often than the UIC CGs did with regard to the informational materials they were provided about dementia. In conclusion, a culturally tailored FN can be an effective tool for Latino CGs given their high unmet needs for assistance and various barriers in accessing resources.

Development of a Web-Based Training Program for Dementia Caregivers in Hong Kong

Training and counseling is helpful to family caregivers of patients with dementia, but accessibility is limited by the need for face-to-face contact. Web-based learning may provide a possible alternative. The current study evaluated the demographic background and stressfulness of 279 dementia family caregivers and explored their opinions (willingness, preferences, and expectations) of an online dementia-related education program (dementia E-learning program) that combined dementia education and psychological and emotional support to caregivers. Over 80% of the respondents showed interest in participating in the dementia E-learning program. It was more appealing to a younger generation, those with higher education level, those with higher awareness of alternative learning channels, in particular an online channel, and those performing assistive caregiving. Convenience was the leading reason for E-learning, while handling behavioral and psychological symptoms of dementia was the most expected learning goal for the program. This study suggested a demand for dementia E-learning resources in Hong Kong, and a comprehensive framework for a multi-domain dementia E-learning platform, ADCarer.com, was conceptualized.