A chronic grief intervention for dementia family caregivers in long-term care.
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ABSTRACT:
SUBMITTER: Paun O
PROVIDER: S-EPMC5546622 | biostudies-other | 2015 Jan
REPOSITORIES: biostudies-other
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Project description:Background: Family dementia caregivers often suffer from an immense toll of grief while caring for their loved ones. We sought to identify the clinical relationship between grief, depression and mindfulness and identify neural predictors of symptomatology and improvement. Methods: Twenty three family dementia caregivers were assessed at baseline for grief, mindfulness and depression, of which 17 underwent functional magnetic resonance imaging (fMRI). During fMRI, caregivers were shown faces of either their dementia-stricken relative or that of a stranger, paired with grief-related or neutral words. In nine subjects, post fMRI scans were also obtained after 4 weeks of either guided imagery or relaxation. Robust regression was used to predict changes in symptoms with longitudinal brain activation (BA) changes as the dependent variable. Results: Grief and depression symptoms were correlated (r = 0.50, p = 0.01), and both were negatively correlated with mindfulness (r = -0.70, p = 0.0002; r = -0.52, p = 0.01). Relative to viewing strangers, caregivers showed pictures of their loved ones (picture factor) exhibited increased activation in the dorsal anterior cingulate gyrus and precuneus. Improvement in grief but not mindfulness or depression was predicted by increased relative BA in the precuneus and anterior cingulate (different subregions from baseline). Viewing grief-related vs. neutral words elicited activity in the medial prefrontal cortex and precuneus. Conclusions: Caregiver grief, depression and mindfulness are interrelated but have at least partially nonoverlapping neural mechanisms. Picture and word stimuli related to caregiver grief evoked brain activity in regions previously identified with bereavement grief. These activation foci might be useful as biomarkers of treatment response.
| S-EPMC6530345 | biostudies-literature
Project description:BACKGROUND:Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. METHODS:In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n?=?120) or a usual care control condition (n?=?120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. DISCUSSION:This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. TRIAL REGISTRATION:ClinicalTrials.gov (NCT02915939, prospectively registered).
| S-EPMC7158110 | biostudies-literature
Project description:Pre-death grief (PDG) is a key challenge faced by caregivers of persons with dementia (PWD). Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically-developed scales that detect PDG. However, they have not had a Mandarin-Chinese version even though Chinese-speaking populations have among the largest number of PWD. We produced a Mandarin-Chinese version of MM-CGI and evaluated whether it had equivalent scores and similar psychometric properties to the English version.We produced the Chinese MM-CGI through the methods of forward-backward translation and cognitive debriefing. Then, we recruited family caregivers of PWD (n?=?394) to complete either the Chinese (n?=?103) or English (n?=?291) version. The two versions were compared in their score-difference (adjusting for potential confounders using multiple linear regression), internal-consistency reliability (using Cronbach's ?) and test-retest reliability (using intraclass correlation-coefficient), known-group validity (based on the relationship with the PWD and stage of dementia) and construct validity (using Spearman's correlation-coefficient).The two versions showed similar mean scores, with the adjusted score-difference of 1.2 (90% CI -5.6 to 7.9) for MM-CGI and?-?0.4 (90% CI -2.9 to 2.1) for MM-CGI-SF. The 90% CI for adjusted score-difference fell within predefined equivalence-margin (±8 for MM-CGI and?±?3 for MM-CGI-SF) and indicated equivalence of the scores. The two versions also demonstrated similar characteristics in reliability and validity.The Chinese MM-CGI opens the way for PDG assessment and intervention among Chinese-speaking caregivers. Establishing its measurement equivalence with the English version paves the way for cross-cultural research on PDG in dementia caregiving.
| S-EPMC5948857 | biostudies-other
Project description:Coping with predeath grief (PDG) is an unmet need in caregivers of persons with dementia (PWD). The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically developed scales that detect PDG, yet they have not been substantially validated outside United States. We evaluated the reliability and validity of the PDG scales in a multiethnic Asian population distinct from that of United States.Family caregivers of community-dwelling PWD (n = 300) completed self-administered questionnaires containing MM-CGI and other scales of related construct. Sixty percent of the participants repeated the questionnaires 1 week later for test-retest reliability. Internal-consistency reliability was assessed by Cronbach's ?, test-retest reliability by intraclass-correlation-coefficient, construct validity by Spearman's correlation-coefficient, and factorial validity by confirmatory factor analysis (CFA). Cohen's ? was used to compare the agreement between MM-CGI and a commonly-used caregiver burden scale (Zarit Burden Interview).MM-CGI and MM-CGI-SF demonstrated internal-consistency reliability, test-retest reliability, construct validity, and known-group validity. In CFA, MM-CGI showed modest model-fit (comparative-fit-index, CFI = .80; Tucker-Lewis-index, TLI = .79), whereas MM-CGI-SF showed better model-fit (CFI = .91; TLI = .90). Eighty-six percent of the caregivers reported average or high levels of PDG, with 18% reporting high PDG. High scores in the caregiver burden scale only showed modest agreement with high scores in MM-CGI (? = .47).MM-CGI and MM-CGI-SF demonstrated adequate psychometric properties and utility, beyond that of a caregiver burden scale, in detecting high PDG in a multiethnic Asian population. They open the way for PDG intervention in clinical care, as well as further exploration in caregiver research.
| S-EPMC5946851 | biostudies-other
Project description:BackgroundFew family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice.MethodsWe conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status.ResultsNVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool.ConclusionsThis study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.
| S-EPMC9313859 | biostudies-literature
Project description:BackgroundThere has been a shift from institutional care towards home care, and from formal to informal care to contain long-term care (LTC) costs in many countries. However, substitution to home care or informal care might be harder to achieve for some conditions than for others. Therefore, insight is needed in differences in LTC use, and the role of potential informal care givers, across specific conditions. We analyze differences in LTC use of previously independent older patients after a fracture of femur and stroke, and in particular examine to what extent having a partner and children affects LTC use for these conditions.MethodsUsing administrative data on Dutch previously independent older people (55+) with a fracture of femur or stroke in 2013, we investigate their LTC use in the year after the condition takes place. We use administrative treatment data to select individuals who were treated by a medical specialist for a stroke or femoral fracture in 2013. Subsequent LTC use is measured as using no formal care, home care, institutional care or being deceased at 13 consecutive four-weekly periods after initial treatment. We relate long-term care use to having a partner, having children, other personal characteristics and the living environment.ResultsThe probability to use no formal care 1 year after the initial treatment is equally high for both conditions, but patients with a fracture are more likely to use home care, while patients with a stroke are more likely to use institutional care or have died. Having a spouse has a negative effect on home care and institutional care use, but the timing of the effect, especially for institutional care, differs strongly between the two conditions. Having children also has a negative effect on formal care use, and this effect is consistently larger for patients with a fracture than patients with a stroke.ConclusionAs the condition and the effect of potential informal care givers matter for subsequent long-term care use, policy makers should take the expected prevalence of specific conditions within the older people population into account when designing long-term care policies.
| S-EPMC7178980 | biostudies-literature
Project description:Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
| S-EPMC7556500 | biostudies-literature
Project description:BackgroundPeople with dementia living in nursing homes are mostly sedentary, which is a consequence of various personal, environmental and organizational factors. Until now, studies on physical activity and safety in dementia have focused on residents and caregivers from the viewpoint of (individual) care provision and health benefits. There has been little to no focus on the possible influence of group dynamics between care providers with regard to physical activity and safety. The aim of this study is to gain more insight into the viewpoints and intentions of groups of professional caregivers towards safety and physical activity and the potential influence of the group-oriented setting in long-term care on physical activity of individual residents.MethodsA qualitative study comprising three focus group discussions including professional caregivers (n = 15) was conducted within two long-term care organizations in the Netherlands. Focus group discussions were structured using an interview guide derived from a preliminary framework, based on existing literature and complemented with clinical expertise.ResultsSeven themes could be derived from the focus group discussions that influence physical activity and safety: 1) Individual health and abilities; 2) Balancing physical activity and safety; 3) Physical restraints; 4) Group interests versus the individual interests; 5) Organization of care and physical environment; 6) Perceived responsibilities and tasks of professional caregivers and 7) Change is challenging.ConclusionsDue to multiple influencing factors, the balance for care providers in long-term care generally tends towards safety over physical activity. Furthermore, in order to stimulate physical activity various limitations are experienced, including the organization of care, the general health of the residents and difficulty to achieve changes in daily care. Most importantly, the group interests of both the professional caregivers and the residents have a substantial influence on the incorporation of physical activity in daily care.
| S-EPMC9121585 | biostudies-literature
Project description:IntroductionThe objective was to develop and refine a version of the Prolonged-Loss Grief-12 (PG-12) specific to caregivers of people living with dementia. Confirmatory factor analysis (CFA) was performed to test the fit of the data from the caregivers and to assess the factor structure of the PG-12 in order to evaluate pre-loss grief accurately by identifying relevant items and eliminating items that are not appropriate for caregivers of persons with dementia.MethodsA total of 699 eligible caregivers of persons living with dementia (PLWDs) were recruited through relevant dementia associations and organizations. The e-mail for recruitment provided potential participants with information about the study and detailed instructions on how to participate by following a link to the online survey. Secondary analysis was based on the survey data. CFA was conducted via the Full Information Maximum Likelihood estimation method to test the unidimensional model of PG-12 in the study population. Standard procedures were used to establish the parameters in the factor loading, factor variance-covariance, and uniqueness matrices.ResultsThe initial model was modified to develop a better fitting model and to detect misfitting parameters in the PG-12 by deleting irrelevant items for the PLWD's caregiver. The adjusted dementia-specific 10-item version (PG-10-D) had significantly improved fit indices. An overall assessment of fit indicated that the model adequately approximated the data. Factor loadings ranged from 0.53 to 0.85.DiscussionWe found that the dementia-specific, unidimensional PG-10-D, modifying the original PG-12, may be useful and parsimonious in assessing and quantifying pre-loss grief in dementia caregivers. Future studies are needed to further test its validity and reliability.HighlightsFirst study to evaluate a dementia-specific 10-item version (PG-10-D) of the Prolonged-Loss Grief-12 (PG-12).PG-10-D is useful in assessing and quantifying pre-loss grief in caregivers.PG-10-D could be an early identifier of caregivers at risk for pre-loss grief.PG-10-D could be the standard measure for effective intervention for caregivers.
| S-EPMC9270640 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) is highly relevant for people with early-stage dementia to communicate their care preferences for serious illness conditions with their family caregivers before they become mentally incapacitated.MethodsA multi-centre, quasi-experimental study was conducted to test the feasibility and acceptability of a theory-guided, dyadic ACP intervention ('Have a Say' programme) among participants with early-stage dementia-family caregiver dyads. The feasibility of the trial design, intervention procedures, subject recruitment and retention, and study instruments were assessed. Study outcomes were measured at baseline (T0), immediately after the intervention (T1), and at 1 month (T2) and 3 months post-intervention (T3). Acceptability of the intervention was determined by the satisfaction score, completion rate and qualitative interviews as process evaluation with a purposive sample of participants and ACP facilitators. Generalised estimating equations were performed to examine differential changes between groups over time, with covariates adjusted.ResultsSubject recruitment from five elderly community centres yielded a recruitment rate of 60% and resulted in 36 client-caregiver dyads. The intervention was acceptable to the dyads, with a mean satisfaction score of 4.4 out of 5 and completion rate of 94.4%. The attrition rates at T1, T2, and T3 were 8.3%, 13.9%, and 19.4%, respectively. The intervention group reported a significantly greater improvement in the readiness for ACP at T1, self-efficacy for ACP at T3, and dyadic concordance on end-of-life care preferences at all time points than the control group, but not on depressive symptoms. Family caregivers in the intervention group reported a significantly higher caregiving burden at T2 than the control group. The qualitative findings revealed that triadic involvement of and trusting relationships among the dyads and ACP facilitators, and documentation of clients' views are the programme strengths, while the structured format and discussion about medical issues posed implementation challenges.ConclusionsThis ACP intervention and trial design were feasible and acceptable to the dyads. Several refinements were identified, including adding a nurse-led group-based session for information giving, allowing flexibility in arrangement, and adding measure of ACP engagement of family caregivers. A rigorous trial to test the effects of the ACP intervention is warranted.Trial registrationRetrospectively registered on 14/08/2020 at clinicaltrials.gov (Identifier: NCT04513106).
| S-EPMC9979490 | biostudies-literature