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 tau, 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. 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.     

Gratitude and coping among familial caregivers of persons with dementia

Objectives: Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated.

Design: This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach.

Results: Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40–76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms).

Conclusion: The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.     

The relationship between caregiving self-efficacy and depressive symptoms in dementia family caregivers

The present study was intended to replicate the findings of Steffen et al. (2002) of a negative relationship between caregiving self-efficacy and depressive symptoms among family dementia caregivers. Female family caregivers (N=74) of community-dwelling individuals diagnosed with dementia completed a telephone interview and self-report assessment packet that included measures of caregiving self-efficacy and depressive symptoms. There was a direct negative relationship between caregiving self-efficacy and depressive symptoms after controlling for objective stressors. There was no support, however, for the hypothesis that caregiving self-efficacy would operate as a moderator, such that the relationship between objective stressors (cognitive impairment and behavior problems) and caregivers' depressive symptoms would be strongest for caregivers reporting lower levels of self-efficacy. The results of this study suggest that caregiving self-efficacy has a strong, direct relationship with depressed symptoms for dementia family caregivers. Longitudinal research is needed to determine if it is an appropriate focus of future intervention research.     

Caregiver self-efficacy, ethnicity, and kinship differences in dementia caregivers.

OBJECTIVE: The authors sought to determine the effect of kinship status (daughters versus wives) and ethnicity (Hispanic/Latino versus Caucasian) on self-efficacy to perform tasks relevant to caregiving in a sample of family caregivers for people with memory problems. METHODS: Baseline data were collected from 238 female caregivers who participated in an intervention program. Ethnic and kin relationship groups were compared on measures of caregiver self-efficacy, acculturation within the Hispanic/Latino sample, and the relationship of self-efficacy to key outcome variables. RESULTS: Hispanics/Latinos reported higher self-efficacy on two of three self-efficacy subscales (Responding to Disruptive Behaviors and Controlling Negative Thoughts About Caregiving). Daughters reported higher self-efficacy on all three self-efficacy scales. Among Hispanics/Latinos, acculturation did not relate strongly to self-efficacy. Caucasian and spousal caregivers appeared to make more generalized appraisals about caregiving. CONCLUSION: Higher self-efficacy among Hispanic/Latino caregivers may relate to cultural values about caregiving and/or ethnic differences in appraisal. Wives may be more at risk for low self-efficacy, which may relate to greater role frustration and distress. This study highlights the heterogeneity among caregivers in their experience of caregiving.     

Social support and well-being in dementia family caregivers: The mediating role of self-efficacy

Objectives: The study investigated self-efficacy as a possible mediator of the relationship between the social support and depressive symptoms of primarily informal caregivers, mainly family members, of patients with dementia in Hong Kong.

Method: One hundred and thirty-four caregivers were interviewed. Path analyses were conducted using a self-efficacy scale that consists of three subscales assessing three domains of caregiving self-efficacy. Self-efficacy for obtaining respite, responding to disruptive patient behaviours, and controlling upsetting thoughts about caregiving were measured.

Results: Results showed that self-efficacy acted as a partial mediator between social support and depressive symptoms of these caregivers.

Conclusion: Findings suggest that self-efficacy may function as a mechanism through which social support influences depressive symptoms, and the importance of this self-efficacy mechanism can be domain-specific.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients' unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients' illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.     

Predictors of life satisfaction among caregivers of individuals with multiple sclerosis

Research on life satisfaction among caregivers of persons with multiple sclerosis (MS) is sparse. This study examined the extent to which MS-specific disease and psychosocial characteristics predict caregiver life satisfaction. Participants were 64 caregivers of patients with MS and the patients for whom they care. Multiple regression analysis indicated that caregiver perception of illness uncertainty and patients’ unawareness of deficits have unique value in predicting caregiver life satisfaction, even after accounting for general financial status. Gender and level of social support were also important contributing factors to caregiver life satisfaction. The findings suggest that duration and severity of the patients’ illness take a greater toll on life satisfaction of caregivers with low versus high social support, particularly among women caregivers.     

Religiosity and quality of life: a dyadic perspective of individuals with dementia and their caregivers

Objectives: Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members’ religiosity on perceptions of IWDs’ quality of life (QoL). Neither of these issues has been extensively explored.

Method: One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs’ everyday-care values and preferences, including religious preferences. Using an actor–partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs’ QoL.

Results: After accounting for care-related stress, one's own religiosity is not significantly related to IWDs’ or caregivers’ perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs’ QoL, caregivers’ religiosity is positively related to IWDs’ self-reports of QoL, and IWDs’ religiosity is negatively associated with caregivers’ perceptions of IWDs’ QoL.

Conclusion: These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD's QoL. It is important that caregivers understand IWDs’ values concerning religion as it may serve as a coping mechanism for dealing with dementia.     

Depression among caregivers of patients with dementia: Associative factors and management approaches

As elderly people increasingly come to represent a higher proportion of the world’s population, various forms of dementia are becoming a significant chronic disease burden. The World Health Organization emphasizes dementia care as a public health priority and calls for more support for family caregivers who commonly play a significant, central role in dementia care. Taking care of someone with dementia is a long-term responsibility that can be stressful and may lead to depression among family caregivers. Depression and related behavioral and cognitive changes among caregivers could in turn affect the status and prognosis of the dementia patient. This review article explores depression in dementia caregivers and summarizes proposed mechanisms, associated factors, management and research findings, and proposes future research directions.     

Respite service use among caregivers of older people: comparative analysis of family dementia caregivers with musculoskeletal and circulatory system disorder caregivers

Objectives: To identify the main drivers of the use of respite services and the need for respite services among caregivers of people experiencing dementia relative to family caregivers of people with other health conditions.

Method: Based on nationally representative secondary data regression analysis was used to test the association between selected health conditions and the utilisation of and need for respite services.

Results: For a person living with dementia the odds of using respite care are higher than for a person with either a musculoskeletal or circulatory condition. Family caregivers of people living with dementia report the odds of the need for more respite as 5.3 times higher than for family caregivers of people with musculoskeletal conditions and 7.7 times higher than for family caregivers of people with circulatory conditions. The main reason for never using respite services is largely driven by the type of health condition, age of care recipient, existence of a spouse, and level of disability.

Conclusions: Respite services that cater to the specific needs of families experiencing dementia at home should become a higher priority within the aged care sector. Alternative models of respite care that focus on prevention and early intervention would be cost effective.     

Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia

Family caregivers, the "second victims" or hidden patients in dementia care, are at risk for social isolation, stress, depression, and mortality. Telephone-based support (telesupport groups) represents a practical, low-burden, low-cost source of emotional support. The present study evaluated the feasibility and effectiveness of professionally led telephone-based support groups for female family caregivers of community-dwelling dementia patients. Recruited through various community sources, 103 female caregivers were randomized to the telesupport group treatment or a control condition. Effects on caregiver burden, depression, and personal gains were evaluated at 6 months, the main end point. Older care-givers (> or =65) in telesupport reported lower depression than control group caregivers did.     

Family caregivers of people with dementia

Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer''s Associations, and psychosocial interventions where indicated.     

The moderating effect of self-efficacy on intervention response in women family caregivers of older adults with dementia.

This study performed moderator analyses to determine if self-efficacy predicted differential outcome in a randomized trial comparing a cognitive behavior psychoeducational intervention and an enhanced support group (ESG). The four key outcomes were depression, anxiety, social support, and coping. Low baseline self-efficacy scores were hypothesized to be more predictive of positive response in the psychoeducational intervention than in the support group. Change from pre- to posttreatment (baseline to three months) for 213 female caregivers of older adult relatives with dementia (122 Anglos and 91 Latinos) are presented. Caregivers were randomly assigned to either the coping with caregiving class (CWC), a skill-building, small group intervention designed to reduce caregiving stress, or to an enhanced support group (ESG), which used guided discussion and empathic listening to develop within-group reciprocal support. The findings showed that low baseline self-efficacy scores better predicted positive response to treatment in the CWC intervention than in the ESG intervention. This study supports the use of self-efficacy as a screening tool for appropriate caregiver intervention assignment.     

Moderating effect of self-efficacy on the relation between behavior problems in persons with dementia and the distress they cause in caregivers

Introduction: Behavioral and psychological symptoms in dementia (BPSD) are the principal sources of stress in caregivers. The aim of the present work is to analyze the moderating effect of self-efficacy for managing BPSD on the distress these problems generate in family caregivers.

Method: The participants were 231 family caregivers of people with dementia. We assessed the frequency and caregiver distress associated with three dimensions of BPSD (depressive, disruptive and memory problems). In addition, we assessed the moderating effect of self-efficacy for dealing with BPSD in the relationship between the dementia patient's frequency of BPSD and caregiver distress through hierarchical regression analyses, one for each of the dimensions of BPSD.

Results: We found a moderating effect of self-efficacy on the relation between the frequency of BPSD and the distress in caregivers for the dimensions of depressive and disruptive behaviors. Caregivers having to deal with a high frequency of behavior problems but with high levels of self-efficacy presented significantly lower levels of distress associated with depressive and disruptive behavior problems compared to those caregivers with low levels of self-efficacy. No differences in the effects of self-efficacy were found for distress levels of caregivers who dealt with low frequency of BPSD. Also, we did not find a moderating effect of self-efficacy on the relation between the frequency of memory problems and caregivers’ distress.

Conclusions: The results suggest that self-efficacy for managing BPSD attenuates the relation between the frequency of behavior problems – both disruptive and depressive – and the distress they cause in caregivers.     

The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers. METHOD: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the "occupational disruptiveness" of behaviors in the nursing home version (NPI-NH). RESULTS: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group. CONCLUSIONS: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.