scholarly journals What is good communication for people living with dementia? A mixed-methods systematic review

2017 ◽  
Vol 29 (11) ◽  
pp. 1785-1800 ◽  
Author(s):  
Sarah Alsawy ◽  
Warren Mansell ◽  
Phil McEvoy ◽  
Sara Tai

ABSTRACTBackground:Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included.Methods:A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases.Results:After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, “open exploration,” or through examining experiences of strategies, “exploration of strategies.” A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication.Conclusions:The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.

2020 ◽  
Vol 32 (S1) ◽  
pp. 131-131
Author(s):  
Claudia van der Velden ◽  
Marleen Prins ◽  
Henriëtte van der Roest

Introduction Healthcare professionals working with people with dementia (PwD) have increasingly been moving away from task-oriented models of healthcare towards a more person-centered care (PCC) model. Several studies have showed positive results of PCC on the quality of life of PwD. Also, it shows positive effects on self -esteem and work satisfaction of healthcare professionals. An effective way to educate professionals in PCC and improve their knowledge and person-centered attitude is by using online learning tools.We developed an e-learning in co-creation with end users focusing on well-being and (changing) behavior of PwD. The interactive e-learning supports healthcare professionals in developing a person-centered attitude, by using practical videos and exercises.Methods In the current pilot study, the e-learning is evaluated. To date, 33 healthcare professionals working in Dutch care homes from different care organizations participated in the study and completed the e-learning. In addition, they filled in online questionnaires before and after completing the e-learning. The questionnaires include the Approach to Dementia Questionnaire, Dementia Knowledge, Person Centered Care, Sense of Competence in Dementia Care Questionnaire. Post-measurement also included questions about satisfaction with the e-learning and user-friendliness.Results The final participants are currently completing their post-measurement questionnaires and final results are expected in September 2019. Preliminary data-analysis shows promising results. Positive effects on knowledge about dementia, person-centered attitude and sense of competence are expected. Also, user-friendliness, especially the flexibility of the e-learning (being able to follow the e-learning at home or at work and being able to stop and continue at any time) and the practice-oriented videos are positively evaluated.Conclusion Preliminary results of this pilot study suggest that the e-learning might contribute to developing a more person-centered attitude in healthcare professionals and indicate that participants have positive experiences with the e-learning module.


2021 ◽  
pp. 026921632110667
Author(s):  
Silvia Gonella ◽  
Gary Mitchell ◽  
Laura Bavelaar ◽  
Alessio Conti ◽  
Mariangela Vanalli ◽  
...  

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.


2021 ◽  
Vol 33 (S1) ◽  
pp. 64-65
Author(s):  
Claudia Van Der Velden ◽  
Henriëtte G. Van Der Roest

Healthcare professionals working with people with dementia (PwD) have increasingly been moving away from task-oriented models of healthcare towards person-centered care (PCC). Several studies have showed positive results of PCC on quality of life of PwD. Also, it shows positive effects on self-esteem and work satisfaction of healthcare professionals (HCP).We developed an successful practice-oriented intervention to implement PCC in long-term care facilities (LTCFs), based on the theory of Kitwood. The intervention consists of different components and learning methods: 1)Management of the facility is trained. They have an important role in motivating HCPs and safeguarding PCC-policy in the future.2)Dementia Care Mapping (DCM)-observations are carried out to gain understanding of the LTCF. DCM is an evidence-based observational method and aims to give a good understanding of the quality of life of PwD.3)The training of staff starts with a Kick-off-meeting. During a ‘Mirror theater’ with professional actors, an act representing a familiar care situation is performed. Staff participates in the act to become aware of PCC. The kick-off also serves as a warming-up on PCC knowledge.4)After this, staff complete an interactive e-learning on the basic theory of PCC. The e-learning contains practical videos and exercises.5)Finally, staff follow two consecutive, practical-oriented team-trainings. They will learn what PCC means for their daily practice and how to reflect on it. The most effective part is the reflection on examples of their own clients, and get more aware of their own behavior. In between trainings, HCP will carry out a practice exercise and provide feedback in session two.In an early stage of the intervention we discuss the possibilities and adjust the approach to the needs and situation (culture, level of knowledge etc.) of the LTCF. Involvement of all the staff in the intervention is essential, so everyone speaks the same ‘language’ and staff can rely on each other. Based on experience, these factors contributes to a sustainable way to implement PCC in LTCFs.


2021 ◽  
pp. 016402752110434
Author(s):  
Areum Han

Objective: This systematic review and meta-analysis examined effects of mindfulness-based interventions (MBIs) on depressive symptoms, anxiety, stress, and quality of life in family caregivers of people with dementia. Methods: A comprehensive search was conducted within the PubMed, CINAHL, PsycINFO, and SCOPUS databases to identify relevant randomized controlled trials (RCTs). Depending on I2 statistic values for heterogeneity, either a random effects model or fixed effects model was used. Subgroup analyses were conducted according to the types of control groups and MBIs. Results: 15 RCTs met the eligibility criteria. Meta-analyses showed medium to large effects of MBIs on depressive symptoms, anxiety, stress, and quality of life at the immediate posttest. Small to large effects of MBIs were found at follow-up. Conclusions: Future high-quality studies involving different types of MBIs and delivery modes are needed to better understand effects of MBIs on family caregivers of people with dementia and examine effective intervention features.


PLoS ONE ◽  
2019 ◽  
Vol 14 (2) ◽  
pp. e0212686 ◽  
Author(s):  
Lynette Chenoweth ◽  
Jane Stein-Parbury ◽  
Samuel Lapkin ◽  
Alex Wang ◽  
Zhixin Liu ◽  
...  

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S891-S891
Author(s):  
Claudia van der Velden

Abstract Healthcare professionals working with people with dementia (PwD) have increasingly been moving towards a person-centered care (PCC) attitude. Several studies have showed positive results of PCC on quality of life of PwD. Also, it shows positive effects on self-esteem and work-satisfaction of professionals. An effective way to educate professionals in PCC is by using online-learning-tools. We developed an e-learning - in co-creation with end-users - focusing on well-being and challenging behavior of PwD. The interactive e-learning supports healthcare professionals in developing a PCC-attitude, using practical videos and exercises. In the current pilot-study, the e-learning is evaluated. To date, 32 professionals working in Dutch care homes from different care organizations participated in the study and completed the e-learning. In addition, they filled in online questionnaires before and after completing the e-learning. The questionnaires include the Approach to Dementia Questionnaire, Dementia Knowledge, Person Centered Care, Sense of Competence in Dementia Care Questionnaire. Post-measurement also included questions about satisfaction with the e-learning and user-friendliness. The final participants are currently completing their post-measurement questionnaires and final results are expected in October 2019. Preliminary data-analysis shows promising results. Although no significant effects were found, two-thirds of the participants indicated they had more knowledge about dementia, could better deal with challenging behavior and understood better how their own behavior and actions influence the behavior of PwD. The user-friendliness was also positively evaluated. Preliminary results suggest that the e-learning helps professionals in their approach to PwD and indicate that participants have positive experiences with the e-learning.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 490-490
Author(s):  
Sharon Anderson ◽  
Jasneet Parmar ◽  
Cheryl Pollard ◽  
Bonnie Dobbs ◽  
Myles Leslie ◽  
...  

Abstract Background While family caregivers [FCGs] provide 75-90% of care for people living in the community, most healthcare providers are not trained to provide person-centered care to FCGs. We followed research recommendations that the healthcare workforce receive competency-based education to identify, assess, support and partner with FCGs. Objective Mixed methods evaluation healthcare workforce education program. Approach: We began by coining the concept “caregiver-centered care,” defining it as a collaborative working relationship between families and healthcare providers aimed at person-centered support for FCGs. From this definition, interdisciplinary stakeholders including FCGs (n=101) co-designed the Foundational Caregiver-Centered Care education. Learning resources included six competency-aligned educational modules with videos and interactive exercises that encourage reflection. Kirkpatrick Barr’s healthcare training evaluation framework underpinned our mixed methods evaluation. We measured participant’s reaction to the education (Level 1) and changes in learner’s knowledge and confidence to work with FCGs (Level 2). Results 352 healthcare providers completed the education online (caregivercare.ca). Learners were satisfied with quality of education (Mean 4.75/5; SD=.5) and the education increased their motivation to learn more about caregiver-centered care (Mean 4.75/5; SD .5). Student’s paired samples T-test indicates pre-post education changes in knowledge and confidence to work with FCGs were significant [Pre (M=37.8, Sd=7.6) to post (M=47.2, SD=3.5) t (125) = -14.39, p<.0005 (two-tailed)]. Qualitative results derived from open responses mirrored the quantitative results. Conclusion The Caregiver-Centered Care education provides a foundation for educating healthcare providers working with FCGs to provide care to FCGs to maintain their wellbeing and sustain care.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.


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