Mastery and Longevity in Spousal Caregivers of Persons with Dementia.
Ontology highlight
ABSTRACT: Objective
Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia.Methods
This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment.Results
Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65).Conclusions
Findings have implications for support programs that help build personal mastery.
SUBMITTER: Savla J
PROVIDER: S-EPMC7424271 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:OBJECTIVES:To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement. DESIGN:Qualitative interview study with convenience sampling and thematic analysis approach. PARTICIPANTS:Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year. SETTING:Data collected in a small Canadian prairie city between fall 2014 and winter 2015. FINDINGS:Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs. CONCLUSIONS:The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
| S-EPMC6773340 | biostudies-literature
Project description:To compare the efficacy of Preventing Aggression in Veterans with Dementia (PAVeD) with that of usual care in decreasing incidence of aggression (primary outcome) and pain and improving depression, pleasant events, caregiver burden, and patient-caregiver relationship quality (secondary outcomes).Randomized controlled trial with assessments at baseline and 3, 6, 9, and 12 months SETTING: Houston, TX.A total of 203 community-dwelling veterans with pain and dementia and their caregivers.PAVeD, 6 to 8 weekly sessions of 45-minute home visits with masters-level clinicians providing instruction to caregivers on recognizing pain, enhancing communication, and making daily activities pleasant and enjoyable, and at least two elective sessions.Cohen-Mansfield Agitation Inventory (primary outcome), Philadelphia Geriatric Pain Intensity Scale, Geriatric Depression Scale, Pleasant Events Schedule-AD, Burden Interview, Mutuality Scale (secondary outcomes), Client Satisfaction Questionnaire.There were no significant differences in aggression incidence between intervention and control groups, although the PAVeD group had significantly better mutuality than controls.PAVeD may need to address a broader range and more in-depth coverage of aggression risk factors with person-centered tailoring to target certain types of distress. Interventions to prevent aggression may also need to address medical providers in addition to caregivers.
| S-EPMC5122463 | biostudies-literature
Project description:Objectives: While ways to reduce caregiver burden have dominated dementia care research, there is little understanding of daily communication and its relationship to caregiver burden and depression. In this study, we sought to: (1) describe the frequency of harsh communication used by caregivers; (2) examine the relationship between harsh communication, caregiver and person with dementia characteristics; and (3) determine the contributions of caregiver depression and burden on such communication.Method: Cross-sectional baseline data were drawn from 250 dyads, who participated in the Dementia Behavior Study (NCT01892579). Hierarchical linear regression models were used to examine the relationship between dyad characteristics and harsh communication scores (using the 6-item Negative Communication Scale), controlling for three groups of covariates: sociodemographic, relationship characteristics and health factors.Results: More than half of the caregivers (mean age = 65.4, 81.2% women, 45.6% spouses) reported they felt like screaming/yelling (N = 138, 55.2%) or used a harsh tone (N = 129, 51.6%) at persons with dementia (Mini Mental Status Examination mean = 14.3, SD: 7.8) at least sometimes. When controlling for all covariates, for each unit increase in caregiver burden, harsh communication increased by 0.486 units (p < 0.001); similarly, for each unit increase in caregiver depression, harsh communication increased by 0.301units (p < 0.001).Conclusion: Over half of dementia caregivers reported they felt like or used one or more harsh forms of communication. Caregiver burden and depression were incrementally associated with greater use of negative communication. Providing caregivers with knowledge, support and specific communication skills may lessen the frequency of harsh communication and possibly reduce burden and depression.
| S-EPMC7089818 | biostudies-literature
Project description:Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.
| S-EPMC9897423 | biostudies-literature
Project description:BackgroundCaregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.MethodsIn a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).ResultsCompared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.ConclusionsCaregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.Trial registrationClinicalTrials.gov registration number: NCT02317523 .
| S-EPMC6343283 | biostudies-literature
Project description:ObjectiveAs the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.MethodsWe conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads.ResultsThe groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships.ConclusionParticipants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers.InnovationLimited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.
| S-EPMC10828581 | biostudies-literature
Project description:BackgroundPersons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework.MethodsConstructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached.ResultsA theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population.ConclusionThe framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.
| S-EPMC8086075 | biostudies-literature
Project description:Background:Dementia can lead to difficulties in communication between caregivers and patients. Teaching conversational strategies has been effective for a wide array of clients with acquired neurologic disorders and their caregivers. Research indicates positive results for Supported Conversation for adults with Aphasia (SCA) secondary to stroke. Applying this method to work with caregivers of individuals with dementia could prove to be a valid intervention tool. This investigation examined the applicability of SCA with individuals with dementia and their familial caregivers. Method:Four dyads (caregiver and individual with dementia) participated in the SCA program with some adaptation for dementia. The program was 4?weeks with a pre-training and post training assessment. The Measure of Skill in Supported Conversation (MSC) and Measure of Level of Participation in Conversation (MPC) were given to measure the overall effectiveness of SCA at teaching and improving communication, respectively. A qualitative analysis of unproductive coping mechanisms also occurred. The Zarit Burden Interview (ZBI) was given to gauge caregiver burden from pre- to post-training. Results:MSC and MPC scores were significantly improved from baseline to post training, and a significant reduction in unproductive coping behaviors also occured. ZBI scores were variable across participants. Conclusions:Results suggest that the SCA has the potential to be used to improve communication between persons with dementia and their caregivers. Findings suggest that further research is warranted into the effectiveness of SCA in dementia. Trial registration:Retrospectively registered 9/5/2018 ISRCTN17622451.
| S-EPMC6337868 | biostudies-other
Project description:OBJECTIVES:To develop a process of goal-setting and measurement of goal attainment in a dementia care management program. DESIGN:Observational. SETTING:Dementia care management program in an urban academic medical center. PARTICIPANTS:Persons with dementia (N=101) and their caregivers; nurse practitioner dementia care managers (N=5). INTERVENTION:Specification of a personalized health goal and action plan and measurement of goal attainment using goal attainment scaling in a clinical care visit. MEASUREMENTS:Goal attainment at 6 and 12 months; focus groups of 5 dementia care managers. RESULTS:Eighty-four percent of participant goals were nonmedical, 47% were related to quality of life, and 29% were caregiver support goals. Eighty-eight percent of participants felt that the goal they set was meaningful and 74% that the goal-setting process captured something different from usual care, and 85% found the process helpful in planning for future care. At 6 months, 74% of dyads had achieved or exceeded their expected level of goal attainment. Dementia care managers felt that the goal-setting process improved their understanding of what was most important to the patient, helped set expectations about disease progression and care needs, and provided positive reinforcement when goals were accomplished and an opportunity for revision when goals were not met. CONCLUSION:Goal setting using goal attainment scaling can be incorporated into the care of persons with dementia to establish and attain person-centered goals. Research is needed to further develop personalized goal attainment as an outcome measure for dementia care. J Am Geriatr Soc 66:2120-2127, 2018.
| S-EPMC7023482 | biostudies-literature
Project description:OBJECTIVE:Spousal caregiving can have strong implications for health and wellbeing given the strain and burden associated with the role. Maintaining activity engagement is important for late-life health and wellbeing, and may be a possible contributing mechanism to caregiver health and wellbeing. This paper examined longitudinal changes in activity engagement and asks how spousal caregiving status and caregiver age related to longitudinal activity engagement in a sample of older adults. METHOD:Data from four waves of the Health and Retirement study were used to model associations between periods of being a spousal caregiver, age, and engagement in physical, social, self-care, passive, and novel information processing activities over a 6-year period. RESULTS:Caregiving status was associated with declines in physical activity engagement over time. Older age was associated with fewer physical and more self-care and passive activities. DISCUSSION:Caregivers' declines in participation in physical activities may be an important indicator for preservation of health and management of caregiving stress.
| S-EPMC6748708 | biostudies-literature