scholarly journals Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis

2016 ◽  
Vol 42 (3-4) ◽  
pp. 198-214 ◽  
Author(s):  
Karlijn J. Joling ◽  
Gill Windle ◽  
Rose-Marie Dröes ◽  
Franka Meiland ◽  
Hein P.J. van Hout ◽  
...  
Keyword(s):  
Informal Caregivers ◽  
Well Being ◽  
Negative Consequences ◽  
Data Set ◽  
Male Caregiver ◽  
People With Dementia ◽  
Different Types ◽  
High Care ◽  
International Data ◽  
Person With Dementia

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services.

scholarly journals Memory and communication support strategies in dementia: Effect of a training program for informal caregivers

2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  
Keyword(s):  
Training Program ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Training Group ◽  
Well Being ◽  
Care Recipient ◽  
Control Group ◽  
People With Dementia ◽  
Person With Dementia ◽  
The Impact

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.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

scholarly journals Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach
Keyword(s):  
Negative Impact ◽  
Living Arrangement ◽  
Informal Caregivers ◽  
Well Being ◽  
Rapid Review ◽  
People With Dementia ◽  
Psychosocial Resilience ◽  
Quantitative Descriptive ◽  
The Impact ◽  
Health And Well Being

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.

scholarly journals The Physical Environment of Nursing Homes for People with Dementia: Traditional Nursing Homes, Small-Scale Living Facilities, and Green Care Farms

Healthcare ◽  
2018 ◽  
Vol 6 (4) ◽  
pp. 137 ◽  
Author(s):  
Bram de Boer ◽  
Hanneke Beerens ◽  
Melanie Katterbach ◽  
Martina Viduka ◽  
Bernadette Willemse ◽  
...  
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
Physical Environment ◽  
Well Being ◽  
Nursing Home Care ◽  
Small Scale ◽  
People With Dementia ◽  
Different Types ◽  
Centered Care ◽  
Green Care Farms

It is well recognized that the physical environment is important for the well-being of people with dementia. This influences developments within the nursing home care sector where there is an increasing interest in supporting person-centered care by using the physical environment. Innovations in nursing home design often focus on small-scale and homelike care environments. This study investigated: (1) the physical environment of different types of nursing homes, comparing traditional nursing homes with small-scale living facilities and green care farms; and (2) how the physical environment was being used in practice in terms of the location, engagement and social interaction of residents. Two observational studies were carried out. Results indicate that the physical environment of small-scale living facilities for people with dementia has the potential to be beneficial for resident’s daily life. However, having a potentially beneficial physical environment did not automatically lead to an optimal use of this environment, as some areas of a nursing home (e.g., outdoor areas) were not utilized. This study emphasizes the importance of nursing staff that provides residents with meaningful activities and stimulates residents to be active and use the physical environment to its full extent.

scholarly journals A qualitative study of the shared experience of humour between people living with dementia and their partners

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1794-1810
Author(s):  
Helen Hickman ◽  
Chris Clarke ◽  
Emma Wolverson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Emotional Experience ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Relationship Strength ◽  
Social And Emotional ◽  
People With Dementia ◽  
Care Partners ◽  
Person With Dementia

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: ‘Humour Has Always Been There (and Always Will Be)’; ‘Withstanding Dementia’ and ‘Renewing the Value of Humour in Dementia’. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.

scholarly journals Serving up mealtime strategies : how families experience dementia in the community

2021 ◽  
Author(s):  
Abigail Wickson
Keyword(s):  
Sense Of Self ◽  
Secondary Analysis ◽  
Well Being ◽  
Spousal Caregivers ◽  
Data Set ◽  
People With Dementia ◽  
Adult Caregivers ◽  
Late Stages ◽  
Existing Data

The mealtime experiences for people with dementia and their caregivers living in the community has not been extensively explored. An existing data set provided information on the mealtime strategies used to cope with changing dementia behaviours. A secondary analysis of data from 10 dyads of people with dementia and their caregivers were analyzed. Four categories were identified including: Strategies to facilitate eating; Strategies to promote a sense of self; Stategies to minimize risk; and Strategies to promote caregiver well-being. The dyads used a variety of strategies that were common to all stages of dementia; however by the late stages, the dyads used more specific strategies. In general, the mealtime strategies used by adult caregivers and spousal caregivers did not greatly differ but rather the context in which they engaged in mealtimes did. The results demonstrated that there are opportunities to educate families and professionals about potential mealtime strategies.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic

2021 ◽  
pp. 019394592110557
Author(s):  
Melissa L. Harris ◽  
Marita G. Titler
Keyword(s):  
Family Caregivers ◽  
Psychological Symptoms ◽  
Behavioral Responses ◽  
Well Being ◽  
Comparative Methods ◽  
People With Dementia ◽  
Effective Care ◽  
Exploratory Approach ◽  
Person With Dementia ◽  
Behavioral And Psychological Symptoms

Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.

Impact of a dementia-specific program of equine-assisted activities: providers’ perspectives

2019 ◽  
Vol 20 (2) ◽  
pp. 37-47
Author(s):  
Beth Fields ◽  
Wendy Wood ◽  
Rebecca Lassell
Keyword(s):  
Service Providers ◽  
Institutional Care ◽  
Complex Interventions ◽  
Well Being ◽  
Scientific Development ◽  
Structured Interviews ◽  
Content Type ◽  
People With Dementia ◽  
Person With Dementia ◽  
Equine Assisted

Purpose Establishing acceptability of complex interventions to stakeholders is vital in early scientific development. The purpose of this paper is to ascertain the acceptability of a program of equine-assisted activities (EAAP) for people with dementia by elucidating programmatic practices needed to enhance their safety and quality of life (QoL) from the perspectives of service providers. Design/methodology/approach Semi-structured interviews with five providers were analyzed using a basic qualitative approach. Findings Providers perceived the EAAP as acceptable and revealed potential mechanisms of change supporting well-being, including aspects related to the physical and social environment and person with dementia. Linkages identified among the EAAP and its physical and social context support its complexity. Providers explicated program practices that promoted safety and QoL, such as implementing staff trainings and tailoring activities to each person’s preferences and needs. These practices aligned with best dementia care approaches, underscoring that the EAAP is a promising complex intervention that merits further scientific development. Originality/value This work is novel and adds to the literature by illuminating the role of a community-based, animal-assisted program for enhancing the QoL of older adults with dementia residing in institutional care facilities.

scholarly journals Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

2017 ◽  
Vol 30 (6) ◽  
pp. 791-805 ◽  
Author(s):  
Kirsty M. Patterson ◽  
Chris Clarke ◽  
Emma L. Wolverson ◽  
Esme D. Moniz-Cook
Keyword(s):  
Lived Experience ◽  
Interpersonal Relationships ◽  
Well Being ◽  
Social Contexts ◽  
Direct Result ◽  
People With Dementia ◽  
The Social ◽  
Relational Aspect ◽  
Person With Dementia ◽  
The Impact

ABSTRACTBackground:Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts.Method:A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have.Results:Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia.Conclusion:Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia.

scholarly journals Impact of iN2L Tablets on Loneliness and Well-Being: Findings of an Innovative Industry-AAA Program

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 949-950
Author(s):  
Lydia Nguyen ◽  
Karen O'Hern ◽  
Adam Siak ◽  
Kristi Stoglin ◽  
Charlotte Mather-Tayor
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Social Isolation ◽  
Well Being ◽  
Case Managers ◽  
Negative Consequences ◽  
Negative Effects ◽  
People With Dementia ◽  
Innovative Program ◽  
Adult Day Centers

Abstract Area Agency on Aging (AAA) senior and adult day centers closed due to COVID-19, causing many older adults to lose an important source of connection and engagement, leading to social isolation. To combat negative consequences, iN2L and a Florida AAA partnered on an innovative program providing iN2L tablets to AAA-supported older adults to use at home. The tablets have a simple interface, content specifically designed for older adults (e.g., games; music; movies), and video call capability. Participants included 51 independent older adults (mean age 77) and 39 family caregivers (mean age 59) of people with dementia. Participants completed phone surveys with AAA case managers at baseline and 3 months, including UCLA Loneliness Scale (3 item) and questions about their tablet experiences. Findings show positive trends for loneliness and well-being in both groups. At 3 months, lonely participants decreased from baseline by 25% for independent older adults and 18% for family caregivers. Over 80% of independent older adults agreed the tablet engages them in meaningful activities, provides daily enjoyment, and helps with relaxation. For family caregivers, 79% agreed the tablet is another tool in their caregiver toolkit and about 70% agreed the tablet adds daily enjoyment, helps with relaxation, and provides engagement in meaningful activities for their family member. Approximately 50% of caregivers felt happier, less stressed, and less irritable since using the tablets. This work has implications for the utility of technology in promoting engagement and connection, alleviating negative effects of social isolation, and the effectiveness of industry-AAA partnerships.

Sign in / Sign up

Export Citation Format

Share Document