Caregivers’ beliefs about dementia: findings from the IDEAL study

Abstract

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study.

Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline.

Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition.

Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.     

Wealthy families and their drug abusing adolescents

Abstract

Researchers have hypothesized that providing care to an elderly relative can negatively affect marital relationships of caregivers. However, no research has directly examined this issue. This study explored the impact of elderly depression and impairment, mental caregiving, caregiver/elderly person relationship closeness, spouse burden, and caregiver burden on caregiver marital happiness (and adjustment) in 90 multigenerational families. No significant relationship was found between these variables and caregiver marital adjustment. A causal model involving the six independent variables and caregiver marital happiness was developed and tested. Elderly depression and caregiver burden directly affected level of caregiver marital happiness. The other four independent variables affected caregiver marital happiness indirectly through caregiver burden. Implications for marriage and family therapists are discussed.     

Manifestations of anxiety and coping strategies in patients with metastatic lung cancer and their family caregivers: a qualitative study

Objective: Advanced non-small cell lung cancer (NSCLC) is common, deadly, and associated with impairing anxiety for patients and caregivers who often co-experience similar symptoms that can vary together over time. We aimed to discover themes as to how NSCLC patients and caregivers express and cope with anxiety.

Design: Semi-structured interviews of patient-caregiver dyads (N?=?21), coded using NVivo Software.

Main Outcome Measures: Open-ended questions on anxiety mutuality, giving or receiving care, communication, and the most difficult aspects of having or caring for someone with Stage IV NSCLC.

Results: Analyses revealed that patients and caregivers were linked psychologically, co-experiencing symptoms of distress or coping, rising and falling together. Shared patient and caregiver themes emerged of cognitive, behavioural and physiological manifestations of anxiety and coping mechanisms.

Conclusions: Patient and caregiver expressions of anxiety and coping methods mapped onto the cognitive-behavioural model, implying potential use of cognitive behavioural therapy (CBT) to address these issues. This expands understanding of symptoms and coping strategies in NSCLC, explores patient-caregiver interaction, and confirms the need for future clinical intervention. Future research should focus on development and dissemination of CBT-based dyadic interventions addressing anxiety in NSCLC patients and caregivers.     

Dementia caregiving: recent research on negative health effects and the efficacy of caregiver interventions

Provision of care to an older adult with dementia is an important societal resource. This resource may also come at a high cost to informal caregivers, most of whom are family members. In this paper we provide an overview of recent research on dementia caregiving and caregiver interventions. First, we provide background information on the prevalence and costs of Alzheimer's disease and related disorders. Second, we describe the specific stressors and broader mental and physical health outcomes of dementia caregiving. Third, recent evidence of the efficacy of caregiver interventions for both caregiver and patient outcomes is reviewed. Throughout the paper, we describe promising new directions for future research in this area, including assessment and intervention with family caregivers of older patients with comorbid dementia and depression, and the focus on sleep disturbance as a critical health consequence of dementia caregiving.     

The cortisol awakening response in caregivers of schizophrenic offspring shows sensitivity to patient status

Abstract

Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.     

Salutary effect of daily coping self-efficacy: impact on day-by-day coping to mood effects within dyads following hematopoietic stem cell transplantation

ABSTRACT

Background and Objectives: Little is known how coping self-efficacy (CSE) interacts with coping in dyad everyday life. The present study examined the moderating role of daily CSE in the relationship between coping and the next-day positive (PA) or negative (NA) affect in patient-caregiver dyads, following hematopoietic stem cell transplantation.

Design: This intensive longitudinal study was conducted during the first 28 days after post-transplant discharge.

Methods: Patients and their caregivers (N?=?200) maintained daily diaries on CSE, coping strategies, and affect.

Results: Daily CSE moderated daily coping–affect relationship: Positive emotion-focused coping increased PA in patients with higher than usual emotion-related CSE, whereas a buffering effect was found at lower than usual emotion-related CSE. A positive association between negative emotion-focused coping and NA in both patients and caregivers was stronger among those with lower than usual levels of emotion-related CSE. Higher than usual instrumental coping reduced NA in patients whose caregivers had higher than usual problem-related CSE, but increased NA for those whose caregivers had lower than usual instrumental CSE.

Conclusion: The findings show that daily CSE contributes to the effectiveness of daily coping within dyad, confirming its significance in effective adaptation and the role in the dyadic coping process.     

Coping with the Uncontrollable: The Use of General and Religious Coping by Caregivers to Spouses with Dementia

SUMMARY

Using a transactional model of stress and coping, we examined the general (i.e., Problem-Focused, Emotion-Focused) and religious (i.e., Self-Directing, Collaborative, Deferring) coping strategies used by 64 caregivers to spouses with dementia to cope with their most significant, albeit uncontrollable, caregiving hassle over a two-month period. With respect to general coping, we hypothesized that caregivers who used Emotion-Focused coping would demonstrate fewer Depressive Symptoms at Month 2 after controlling for Depressive Symptoms at Month 1. With respect to religious coping, we hypothesized that care-givers who used Deferring Coping would also demonstrate fewer Depressive Symptoms. Results revealed interesting patterns between caregivers' use of general and religious coping strategies. Contrary to our hypotheses, caregivers who used Emotion-Focused and Collaborative coping reported greater Depressive Symptoms. Implications for the empirical study of stress and coping and directions for future research are discussed.     

The Challenge of Maintaining Spiritual Connectedness for Persons Institutionalized with Dementia

ABSTRACT

Persons with dementia who reside in long term care facilities continue to have spiritual needs, but providing for these needs presents many challenges. Encouraging, fostering and maintaining spiritual connectedness is crucial to providing for a high quality of life. Memory, grief and mourning, care planning, communication, and education of caregivers are discussed within the context of a working application of spiritual well-being. Practical ways to deal with some of the dilemmas for the individual person with dementia, his or her family, support network, and the religious community are addressed.     

Social support,coping, and psychological adjustment among caregivers of head-injured patients

Abstract

The purpose of this study was to test a mediational model of risk and protective factors associated with the psychological adjustment of caregivers of head-injured patients. Forty-three caregivers of patients who had suffered a head injury participated in the study. Findings strongly supported hypotheses. Caregiver burden was associated with poorer psychological adjustment. Social support and a higher percentage of approach coping strategies relative to overall coping strategies were associated with better psychological adjustment. As predicted, caregiver burden showed a direct relationship to psychological adjustment, while social support showed an indirect relationship to adjustment mediated by percentage approach coping.     

Endorsement of proactively aggressive caregiving strategies moderates the relation between caregiver mental health and potentially harmful caregiving behavior

This research tested the proposition that the oft-reported relation between caregiver mental health outcomes (i.e., resentment, depression) and potentially harmful caregiver behavior (PHB) would be mediated or moderated by caregiver endorsement of proactively aggressive caregiving strategies (PA). Caregiver resentment was the strongest predictor of PHB in the sample of 417 informal caregivers who resided with their care recipients; in fact, resentment mediated the impact of caregiver depression, thus suggesting that depressed affect was associated with PHB only if depressed caregivers resented their caregiving burdens. As predicted, caregiver endorsement of PA moderated the relation between resentment and PHB, such that links between these two constructs were strongest when caregivers were high in both resentment and PA. Endorsement of PA also mediated the relations between demographic or contextual variables (i.e., income, care recipient dementia) and PHB. Implications of these results for research and intervention are discussed.     

Layers of engagement: Staff perceptions of spiritual care in residential aged care

ABSTRACT

Addressing the spiritual care needs of residents living in aged-care facilities should be an important dimension of quality care. We conducted semi-structured interviews with residential aged-care staff (including caregivers, nurses, managers, and chaplains) in New Zealand to explore how spiritual care is understood and operationalized. Many participants appeared to equate spiritual care with holistic care that respects the whole person. Participants discussed five types of spiritual care engagement requiring different skills, knowledge, and personal commitment, including information gathering, facilitation, companionship, end-of-life care, and counseling. Our findings suggest that the spiritual care that was offered by our participants, clergy and non-clergy alike, was predominantly informal and unplanned.     

Factor Structure of Patient and Caregiver Ratings on the Dementia Quality of Life Instrument

ABSTRACT

Preliminary evidence suggests that quality of life reports from patients diagnosed with mild cognitive impairment (MCI) and mild Alzheimer's disease (AD) are as reliable and valid as data provided by caregivers. To date, no studies compared the factor structure of data provided by caregivers and patients. Factor analyses are important to conduct because they are an indicator of validity. This study compared the factor structure of patient and caregiver reports on the Dementia Quality of Life scale (DQoL). Participants (N?=?67) were patients diagnosed with amnestic MCI or mild AD and their caregivers. Principal axis factor analyses were run separately on patient and caregiver report data. The three-factor solutions for patient and caregiver data were nearly identical. Three factors corresponding to positive affect, negative affect, and aesthetics emerged reliably from analyses. Thus, data from patients demonstrated a factor structure that was highly consistent with caregiver report data and conformed to meaningful psychological constructs.     

Inventory of Overburden in Alzheimer's Patient Family Caregivers with no Specialized Training

Background/Objective: Alzheimer-type dementia is one of the most frequent causes of dependence in an aging population, which combines with a considerable demand for care. Furthermore, when the caregiver is a family member or person without specialized training, such care impacts on that person's health. The Inventory of Overburden in Alzheimer's Patient Family Caregivers with no Specialized Training (IPSO-CA24) was designed to find out the needs of these caregivers and evaluate the caregiver's burden or distress. Method: The psychometric properties of the questionnaire were analyzed (in a reliability analysis, exploratory factor analysis and confirmatory analysis) based on the responses of 255 caregivers. Results: The factor analyses showed a six-factor structure (Reaction to diagnosis, Physical health, Psychological symptomatology (caretaker), Behavioral symptomatology (patient), Knowledge of the illness, and Level of dependence) explaining 66.52% of the total variance with a reliability of .75 to .93. Support was also found for its convergent validity. Conclusions: The IPSO-CA24 responds to the need for an instrument enabling multidimensional evaluation of the burden on the family caregiver without specialized training.     

Care for Caregivers: Understanding the Need for Caregiver Support

Most long‐term care for older adults in the United States is provided by informal caregivers (Ahmad, 2012 ), the majority of whom experience an intense range of emotions from satisfaction to loneliness. Counselors must consider this emerging population of caretakers and learn methods to encourage clinical services to address their need for support. This article delineates experiences and challenges of informal caregivers and provides suggestions for effective clinical services for caregiver populations.     

Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research

Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers’ QoL.

Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography.

Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers.

Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail.     

Informal Caregiving to Persons with AIDS in the United States: Caregiver Burden Among Central Cities Residents Eighteen to Forty-Nine Years Old

Characteristics and caregiving experiences of friends and family members caring for people with AIDS (PWAs) were examined. Based on a probability sample of informal AIDS caregivers ages 18–49 living in central cities of the United States (n = 260), analyses were conducted to (a) identify the sociodemographic characteristics of young central city caregivers; and (b) examine the effects of caregiver characteristics (relationship to PWA, gender, race/ethnicity, income, sexual orientation, HIV status, perceived susceptibility), and level of objective caregiving demands, on subjective caregiver burden. Results indicate that the largest group of caregivers in this age category are male friends of the PWA—a group not typically found among caregivers to persons with other types of illnesses. In general, gay or bisexual caregivers, caregivers who have traditional family ties to the PWA, men relative to women, and lower income caregivers, report the greatest burden. While level of caregiving demands represents the most influential predictor of caregiver burden, white and male caregivers experience greater burden, independent of level of involvement and other caregiver characteristics. Receiving instrumental support with caregiving buffers the impact of high objective demands on subjective burden.     

Dynandcs in cancer caregiver's health over time: Gender-specific patterns and determinants

Abstract

This study exandned patterns and determinants of three dimensions of caregiver's health of newly diagnosed colorectal cancer patients, i.e. physical, mental and social functioning (N= 148). Physical functioning declined within a 6-month period in female caregivers, while no change was observed in male caregivers. For mental and social functioning, an improvement was observed in male and female caregivers. Change in physical functioning was associated with gender, age, income and initial level. Change in mental functioning was predicted by initial status and positive as well as negative caregiver experiences. Change in social functioning was mainly predicted by initial level and change in patient's dependency. Physical and mental functioning showed the least favorable patterns in female caregivers. The study shows that caregiving may lead to positive health consequences, and underlines the importance of making a distinction between male and female caregivers and of studying caregiver outcomes by using multidimensional assessments.