scholarly journals Professional and family caregivers’ attitudes towards involuntary treatment in community-dwelling people with dementia

2018 ◽  
Vol 75 (1) ◽  
pp. 96-107 ◽  
Author(s):  
Angela M. H. J. Mengelers ◽  
Michel H. C. Bleijlevens ◽  
Hilde Verbeek ◽  
Elizabeth Capezuti ◽  
Frans E. S. Tan ◽  
...  
2015 ◽  
Vol 27 (12) ◽  
pp. 2031-2044 ◽  
Author(s):  
Anna-Eva Prick ◽  
Jacomine de Lange ◽  
Jos Twisk ◽  
Anne Margriet Pot

ABSTRACTBackground:Earlier research showed that multi-component dyadic interventions – including a combination of intervention strategies and addressing both the person with dementia and caregiver – have a beneficial impact on the mental and physical health of people with dementia and their family caregivers. A randomized controlled trial (RCT) of a multi-component dyadic intervention, which is a translated and adapted version of an intervention that has been shown to be effective in the US by Teri et al. (2003), was performed. The effects on caregivers’ mood (primary outcome), burden, general health, and salivary cortisol levels (secondary outcomes) were studied.Methods:Community-dwelling people with dementia and their family caregivers (N = 111 dyads) were randomly assigned. The experimental group received eight home visits during three months, combining physical exercise and support (psycho-education, communication skills training, and planning of pleasant activities). Both the physical exercise and support component were directed at both the person with dementia and the caregiver. The comparison group received monthly information bulletins and phone calls. There were three measurements at baseline (prior to the intervention), at three months, and at six months into the intervention. Data were analyzed with Generalized Estimating Equations (GEE) based on an intention-to-treat analysis of all available data.Results:All analyses showed no benefits of the intervention over time on any of the outcomes.Conclusion:The negative results might be explained by the translation and adaptation of the intervention that has been shown to be effective in the US: the intervention was shortened and did not include cognitive reframing. However, only the health effects on people with dementia and not on caregivers were studied in the US. Several other factors might also have played a role, which are important for future studies to take into account. These are: the usual health care in the country or region of implementation; the wishes and needs of participants for specific intervention components; the room for improvement regarding these components; the inclusion of positive outcome measures, such as pleasure, and the quality of the relationship.


2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.


2021 ◽  
pp. 1-12
Author(s):  
Joel Sadavoy ◽  
Sima Sajedinejad ◽  
Mary Chiu

ABSTRACT Objectives: While family caregivers (CGs) of persons with dementia are cost-effective for the health system, this form of caregiving leads to disproportionate vulnerability to physical, mental, and social adverse health consequences among CGs. The study goal was to determine the effect of the Reitman Centre CARERS program on key outcomes in family CGs of people with dementia. The Reitman Centre CARERS program is an innovative, group psychotherapeutic skills training intervention based on integrated problem-solving techniques (PST), simulation learning, and group psychotherapy designed to address each CGs’ unique situation. Design: A quasi-experimental, non-randomized, pre–post evaluation, multiple groups, multisite trial. Setting: Multisite group intervention provided in community agencies and hospital-based locations. Participants: Spousal or adult child family CGs (n = 264) living in the community and providing care to community-dwelling family members with dementia. Measurement: CGs were assessed for depression (CES-D); stress (PSS); burden (12-item SZBI); role overload, mastery, caregiving competence, and role captivity (Perlin scales), coping (CISS – Coping Inventory for Stressful Situations), CG reactions to CR’s memory and behavioral symptoms (RMBPC). Care recipients (CRs) were assessed on basic and complex activities of daily living (Katz and Lawton). Paired t-tests and Wilcoxon signed-rank test were used for statistical analysis of both the whole group and a more compromised subgroup of CGs. Results: For the group as a whole, CGs showed significant positive change on post-intervention outcome measures of stress, depression, burden, competence, role captivity, overload, mastery, coping, and reaction to memory issues. The intervention showed especially robust effect sizes (ES) in more compromised CGs. These positive outcomes emerged despite a significant measured deterioration in CRs’ function. Conclusion: The CARERS program may be an effective multicomponent intervention to improve the well-being, functioning, and coping skills of dementia CGs.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-589
Author(s):  
Karin Wolf-Ostermann ◽  
Lars Steinert ◽  
Tanja Shultz ◽  
Viktoria Hoel

Abstract People with dementia and their family caregivers struggling with the impacts of the condition on cognitive abilities, experience deterred social interactions and strained relationships. Technology can potentially sustain the relationship by engaging dyads in joint activities and supporting their interaction. This study aimed to evaluate the impact of a tablet-based activation system, I-CARE, specifically designed to engage people with dementia in meaningful activities. In this intervention, community-dwelling people with dementia and their family caregiver engaged in joint activities supported by the I-CARE system. Quantitative measures on quality of life, relationship quality and caregiver burden are collected, while semi-structured interviews explore the impact of Covid-19, as well as what motivates the participants to invite technology into their dyadic interactions. Our findings provide important insight in how technology can support social health and relationship sustenance of dyads living with dementia, and what implications Covid-19 has for their social participation in society.


2013 ◽  
Vol 26 (1) ◽  
pp. 105-113 ◽  
Author(s):  
Laetitia Rullier ◽  
Alexia Lagarde ◽  
Jean Bouisson ◽  
Valérie Bergua ◽  
Marion Torres ◽  
...  

ABSTRACTBackground:This exploratory study investigated the associations of individual characteristics of both persons with dementia and family caregivers with the nutritional status of caregivers.Methods:This cross-sectional study was conducted at home by psychogerontologist within the frame of a community gerontological center in rural areas of south west France. The study participants comprised 56 community-dwelling persons with dementia (mean 80.7 years, SD 6.5) and 56 family caregivers (mean 70.9 years, SD 11.0). Persons with dementia were assessed with Mini-Mental State Examination (MMSE), Basic Activities Of Daily Living (ADL), Instrumental ADL (IADL), and NeuroPsychiatric Inventory (NPI), and family caregivers with the Burden Interview (Zarit scale), the State-Trait Anxiety Inventory (STAI Y-B), the Center for Epidemiologic Studies Depression Scale (CES-D), the emotional impact measure of NPI and the Autonomy, Gerontology and Group Resources scale (AGGIR scale). For both, nutritional status was evaluated using the Mini Nutritional Assessment (MNA®).Results:Among family caregivers, 32.1% were at risk of malnutrition and 5.4% were malnourished, and among people with dementia, 58.9% and 23.2%, respectively. NPI severity score of apathy of persons with dementia (Beta = −0.342, p = 0.001), dependency on AGGIR scale (Beta = −0.336, p = 0.002), and CES-D score of caregivers (Beta = −0.365, p = 0.001) were associated with caregivers’ MNA score (Adjusted R2 = 0.480, p < 0.001).Conclusion:These preliminary findings emphasize the need for routine assessment of depressive symptoms, functional and nutritional status in dementia family caregivers, and confirm the value of investigating caregivers’ nutritional risk through an integrative view including psychosocial approach.


2013 ◽  
Vol 25 (10) ◽  
pp. 1581-1603 ◽  
Author(s):  
Netta Van't Leven ◽  
Anna-Eva J. C. Prick ◽  
Johanna G. Groenewoud ◽  
Pepijn D. D. M. Roelofs ◽  
Jacomine de Lange ◽  
...  

ABSTRACTBackground:In this review, we study the effects of dyadic psychosocial interventions focused on community-dwelling people with dementia and their family caregivers, and the relationship of the effects with intervention components of programs.Methods:A search from January 2005 to January 2012 led to 613 hits, which we reviewed against our inclusion criteria. We added studies from 1992 to 2005 reviewed by Smits et al. (Smits, C. H. M., De Lange, J., Droes, R.-M., Meiland, F., Vernooij-Dassen, M. and Pot, A. M. (2007). Effects of combined intervention programs for people with dementia living at home and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 22, 1181–1193). We assessed the methodological quality of 41 programs with the Cochrane criteria and two items of the Oxford Centre of Evidence-based Medicine guidelines.Results:Studies of moderate to high quality concerning 20 different dyadic psychosocial programs for people with dementia and caregivers were included. Nineteen of these programs show significant effects on the patient with dementia, the caregiver, or both. Due to differences in the programs and the studies, this study does not provide an unequivocal answer about which programs are most effective. Programs with intervention components that actively train one or more specific functional domains for the person with dementia and/or the caregiver seem to have a beneficial impact on that domain, although there are exceptions. Reasons can be found in the program itself, the implementation of the program, and the study design.Conclusions:Dyadic psychosocial programs are effective, but the outcomes for the person with dementia and the caregiver vary. More attention is needed for matching the targeted functional domains, intervention components, and delivery characteristics of a program with the needs of the person with dementia and the family caregiver.


Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 303-322 ◽  
Author(s):  
Jean Hennings ◽  
Katherine Froggatt

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers’ experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but… The review demonstrates that some aspects of spouses’ experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses’ motivations to continue caring in this context and to find ways of supporting them.


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