Moving through predeath grief: Psychological support for family caregivers of people with dementia

Dementia ◽  
2017 ◽  
Vol 18 (7-8) ◽  
pp. 2474-2493 ◽  
Author(s):  
Franziska Meichsner ◽  
Stefanie Köhler ◽  
Gabriele Wilz

When caring for a family member with dementia, continuous losses and predeath grief can adversely affect the caregivers’ physical and mental health. Interventions for caregivers should therefore also aim at coping with loss and managing predeath grief. It was the objective of the present study to describe sources of grief caregivers report during therapy and to investigate how therapists can support caregivers. Two caregivers who participated in a randomized controlled trial were selected for this case study. Both caregivers received an intervention based on the principles of cognitive-behavioral therapy with grief-focused content that consisted of 12 sessions within six months. Three therapy sessions per participant were transcribed, coded, and analyzed using qualitative content analysis. Results illustrate that both caregivers experienced a loss of companionship with their respective care recipient and ambiguous loss that resulted in intense grief that they found difficult to manage. Therapists responded by supporting the caregivers to acknowledge their losses and identify individual ways to cope with and accept loss and grief. Both caregivers reported higher well-being and an increased ability to manage their grief-related emotions after the therapy ended. The identified intervention strategies fit well into a theoretical framework for grief interventions for dementia caregivers, i.e. the dementia grief model.

2006 ◽  
Vol 18 (4) ◽  
pp. 577-595 ◽  
Author(s):  
Martin Pinquart ◽  
Silvia Sörensen

Background: In recent years, many different forms of interventions for caregivers of people with dementia have been developed. However, their results have been, in part, inconclusive.Methods: Meta-analysis was used to integrate the results of 127 intervention studies with dementia caregivers published or presented between 1982 and 2005.Results: Interventions had, on average, significant but small effects on burden, depression, subjective well-being, ability/knowledge and symptoms of care recipient. Only multicomponent interventions reduced the risk for institu-tionalization. Psychoeducational interventions that require active participation of caregivers had the broadest effects. Effects of cognitive-behavioral therapy, support, counseling, daycare, training of care recipient, and multicomponent interventions were domain specific. The effect sizes varied by study chara-cteristics, such as caregiver gender and year of publication.Conclusions: Because most interventions have domain-specific outcomes, clinicians must tailor interventions according to the specific needs of the individual caregivers. Although more recent interventions showed stronger effects, there is room for further improvements in interventions.


2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  

ABSTRACTBackground: People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated.Methods: A pre-test/post-test controlled trial was undertaken with caregiver–care-recipient dyads living in the community. Measures of the carers’ knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured.Results: Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers’ knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups.Conclusions: This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.


2015 ◽  
Vol 27 (6) ◽  
pp. 927-936 ◽  
Author(s):  
Lizzy M. M. Boots ◽  
Claire A. G. Wolfs ◽  
Frans R. J. Verhey ◽  
Gertrudis I. J. M. Kempen ◽  
Marjolein E. de Vugt

ABSTRACTBackground:Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.Methods:Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.Results:Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.Conclusions:Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.


2020 ◽  
Vol 32 (S1) ◽  
pp. 113-113
Author(s):  
Mareike C. Sittler ◽  
Nils F. Töpfer ◽  
Franziska Meichsner ◽  
Christina Theurer ◽  
Gabriele Wilz

Background:Even if cognitive-behavioral therapy (CBT) for caregiving relatives of people with dementia (PwD) has been found to be effective across various outcome measures, investigations into the long-term effects of these interventions remain scarce. Therefore, the purpose of the present study was the evaluation of a CBT intervention for caregiving relatives of PwD three years after intervention onset.Method:273 caregivers were randomly assigned to receive the intervention (IG) or usual care (CG). IG participants received over 6 month twelve 50-min sessions of individual CBT by trained psychotherapists. Symptoms of depression (CES-D), physical health symptoms (GBB-24), challenging behavior (BEHAVE-AD), quality of life (WHOQOL-BREF), utilization of psychosocial resources (RES), burden of care, coping with the care situation, and emotional well-being (visual analogue scales) were assessed three years after baseline. Data were analyzed using generalized ANCOVA.Results:164 participants (IG: n = 83, CG: n = 81; 60% of the baseline sample) participated in the three-year follow-up. Based on changes in the caregiving situation at three-year follow-up, we divided the sample into three subgroups: “still caring at home” (n = 52), “nursing home placement of the care recipient” (n = 29), “bereaved caregivers” (n = 83). Positive effects were found in the subgroup of caregivers “still caring at home” (on burden of care, coping with challenging behavior, social relationships QoL-domain) and “bereaved caregivers” (on overall QoL and physical health QoL-domain) compared to the CG. However, IG participants who decided for “nursing home placement of the care recipient” had poorer outcomes on a few measures (overall QoL, psychological health, emotional well-being, utilization of resources related to well-being).Discussion:It is impressive that CBT for caregiving relatives yielded positive effects in caregivers still caring at home and bereaved caregivers investigating long-term effects three years after baseline. Many challenges arise over the course of the different caregiving trajectories with changes in the caregiving situation being probably particularly influential. We will provide some ideas on how effects could be further sustained and discuss the need for further investigating the impact of changes in the caregiving situation.


2021 ◽  
pp. 1-14
Author(s):  
Nina Reinholt ◽  
Morten Hvenegaard ◽  
Anne Bryde Christensen ◽  
Anita Eskildsen ◽  
Carsten Hjorthøj ◽  
...  

<b><i>Introduction:</i></b> The Unified Protocol for Transdiagnostic Treatment of Emotional Disorders (UP) delivered in a group format could facilitate the implementation of evidence-based psychological treatments. <b><i>Objective:</i></b> This study compared the efficacy of group UP and diagnosis-specific cognitive behavioral therapy (dCBT) for anxiety and depression in outpatient mental health services. <b><i>Methods:</i></b> In this pragmatic, multi-center, single-blinded, non-inferiority, randomized controlled trial (RCT), we assigned 291 patients with major depressive disorder, social anxiety disorder, panic disorder, or agoraphobia to 14 weekly sessions in mixed-diagnosis UP or single-diagnosis dCBT groups. The primary test was non-inferiority, using a priori criteria, on the World Health Organisation 5 Well-Being Index (WHO-5) at the end of the treatment. Secondary outcomes were functioning and symptoms. We assessed outcomes at baseline, end-of-treatment, and at a 6-month follow-up. A modified per-protocol analysis was performed. <b><i>Results:</i></b> At end-of-treatment, WHO-5 mean scores for patients in UP (<i>n</i> = 148) were non-inferior to those of patients in dCBT (<i>n</i> = 143; mean difference –2.94; 95% CI –8.10 to 2.21). Results were inconclusive for the WHO-5 at the 6-month follow-up. Results for secondary outcomes were non-inferior at end-of-treatment and the 6-month follow-up. Client satisfaction and rates of attrition, response, remission, and deterioration were similar across conditions. <b><i>Conclusions:</i></b> This RCT demonstrated non-inferior acute-phase outcomes of group-delivered UP compared with dCBT for major depressive disorder, social anxiety disorder, panic disorder, and agoraphobia in outpatient mental health services. The long-term effects of UP on well-being need further investigation. If study findings are replicated, UP should be considered a viable alternative to dCBT for common anxiety disorders and depression in outpatient mental health services.


2007 ◽  
Vol 4 (1) ◽  
pp. 107-113 ◽  
Author(s):  
Ryan B. Abbott ◽  
Ka-Kit Hui ◽  
Ron D. Hays ◽  
Ming-Dong Li ◽  
Timothy Pan

This study examined whether a traditional low-impact mind–body exercise, Tai Chi, affects health-related quality-of-life (HRQOL) and headache impact in an adult population suffering from tension-type headaches. Forty-seven participants were randomly assigned to either a 15 week intervention program of Tai Chi instruction or a wait-list control group. HRQOL (SF-36v2) and headache status (HIT-6™) were obtained at baseline and at 5, 10 and 15 weeks post-baseline during the intervention period. Statistically significant (P< 0.05) improvements in favor of the intervention were present for the HIT score and the SF-36 pain, energy/fatigue, social functioning, emotional well-being and mental health summary scores. A 15 week intervention of Tai Chi practice was effective in reducing headache impact and also effective in improving perceptions of some aspects of physical and mental health.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e031332 ◽  
Author(s):  
Felicity Anne Baker ◽  
Jodie Bloska ◽  
Sabine Braat ◽  
Anna Bukowska ◽  
Imogen Clark ◽  
...  

IntroductionPharmacological interventions to address behavioural and psychological symptoms of dementia (BPSD) can have undesirable side effects, therefore non-pharmacological approaches to managing symptoms may be preferable. Past studies show that music therapy can reduce BPSD, and other studies have explored how formal caregivers use music in their caring roles. However, no randomised study has examined the effects on BPSD of music interventions delivered by informal caregivers (CGs) in the home setting. Our project aims to address the need for improved informal care by training cohabiting family CGs to implement music interventions that target BPSD, and the quality of life (QoL) and well-being of people with dementia (PwD) and CGs.Methods and analysisA large international three-arm parallel-group randomised controlled trial will recruit a sample of 495 dyads from Australia, Germany, UK, Poland and Norway. Dyads will be randomised equally to standard care (SC), a home-based music programme plus SC, or a home-based reading programme plus SC for 12 weeks. The primary outcome is BPSD of PwD (measured using the Neuropsychiatric Inventory-Questionnaire). Secondary outcomes will examine relationship quality between CG and PwD, depression, resilience, competence, QoL for CG and QoL for PwD. Outcomes will be collected at baseline, at the end of the 12-week intervention and at 6 months post randomisation. Resource Utilisation in Dementia will be used to collect economic data across the life of the intervention and at 6-month follow-up. We hypothesise that the music programme plus SC will generate better results than SC alone (primary comparison) and the reading programme plus SC (secondary comparison).Ethics and disseminationEthical approval has been obtained for all countries. Results will be presented at national and international conferences and published in scientific journals and disseminated to consumer and caregiver representatives and the community.Trial registration numbersACTRN12618001799246p; NCT03907748


2020 ◽  
pp. 003435522096218
Author(s):  
Natalie A. Williams ◽  
Holly Hatton-Bowers ◽  
Kara L. Kohel ◽  
Shruti Pillai ◽  
Judith M. Burnfield

The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Informal caregivers ( N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.


Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Jonas Eimontas ◽  
Vilmantė Pakalniškienė ◽  
Ieva Biliunaite ◽  
Gerhard Andersson

Abstract Background Depression is most common among the elderly and is associated with major impairment. With limited accessible treatments available, remotely provided interventions are needed. Internet-based interventions have been proven effective for a number of mental and somatic health problems. However, the elderly population has received relatively limited attention in previous studies. This study aims to address this gap by investigating the effectiveness of a tailored Internet-delivered modular intervention based on cognitive behavioral therapy (CBT). Methods A minimum of 60 participants will be recruited and randomly assigned to groups in a two-armed parallel controlled trial with a waiting list. The intervention group will have access to an 8-week therapist-supported modular intervention. The waiting list group will be instructed to wait for 8 weeks and then granted access to the intervention for 8 weeks. Pre, post, and 3-, 12-, and 24-month follow-up assessments are planned for measuring changes in depression symptoms, anxiety symptoms, and psychological well-being using PHQ-9, GDS, GAD-7, and WHO-5. Primary outcomes of all the participants will be analyzed using the intention-to-treat principle, and within- and between-group effect sizes will be calculated. Discussion Internet-based interventions could help address the existing treatment gap for depressed older adults. However, to date, the effectiveness of Internet-based CBT (ICBT) for depressed older adults has only been tested in a few studies. This trial will demonstrate if Internet-based CBT is effective for this population when compared to a waiting list control. Further analysis of secondary outcomes and participant behavior in the intervention will potentially reveal effectiveness moderating factors. Trial registration ClinicalTrials.gov NCT04728204. Registered on 15 January 2021. https://www.clinicaltrials.gov/ct2/show/NCT04728204?term=NCT04728204&draw=2&rank=1


Sign in / Sign up

Export Citation Format

Share Document