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 ‘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 The Impact of Interpersonal Relationships on Dietary Habits

2021 ◽  
Author(s):  
Freda D. Intiful ◽  
Rebecca Steele-Dadzie ◽  
Patricia Mawusi Amos ◽  
Ruth Pobee ◽  
Joana Ainuson-Quampah ◽  
...  
Keyword(s):  
Interpersonal Relationships ◽  
Dietary Habits ◽  
Well Being ◽  
Good Health ◽  
The Novel ◽  
Level Of Evidence ◽  
Eating Pattern ◽  
Corona Virus ◽  
The Social ◽  
The Impact

In recent times, there is significant level of evidence to suggest a transition in the eating pattern and dietary habits of people across the globe. Food, though a physiological necessity and required for good health and functionality, also contributes to the social, cultural, psychological and emotional well-being of our lives. There is no doubt that relationships contribute to how, what and when people eat. This chapter will review the impact of how different categories and levels of interpersonal relationships impact on the development of dietary habits among people. Additionally the chapter will explore how the advent of the novel corona virus, covid-19 has impacted on interpersonal relationships and consequently on dietary habits.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

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 “He Just Doesn’t Want to Get Out of the Chair and Do It”: The Impact of Apathy in People with Dementia on Their Carers

2021 ◽  
Vol 18 (12) ◽  
pp. 6317
Author(s):  
Chern Yi Marybeth Chang ◽  
Waqaar Baber ◽  
Tom Dening ◽  
Jennifer Yates
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Psychological Symptom ◽  
Subjective Experiences ◽  
Structured Interviews ◽  
The People ◽  
People With Dementia ◽  
Societal Level ◽  
Person With Dementia ◽  
The Impact

Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.

scholarly journals The Lived Experience of Recovery: The Role of Health Work in Addressing the Social Determinants of Mental Health

2020 ◽  
pp. 1-17
Author(s):  
Colleen Reid ◽  
Nancy Clark ◽  
Ania Landy ◽  
Maya Alonso
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Social Determinants ◽  
Recovery Process ◽  
Well Being ◽  
Policy Framework ◽  
Health Work ◽  
Policy And Practice ◽  
The Social ◽  
The Impact

Recovery is a policy framework for mental health in Canada. Key challenges to the integration of recovery include a gap in knowledge about the work that people do to promote their health and well-being in the context of living with mental ill health. This study used Photovoice to explore the lived realities of people living with mental ill health and the impact of the social determinants on their recovery process. Findings from this study inform policy and practice on promoting health work as an important dimension of recovery and community inclusion.

Entanglements between Agency and Vulnerability in the Phenomenon of Birth. Reflections on Children’s Expressions about ‘Being Born’

2020 ◽  
Vol 15 (2-2020) ◽  
pp. 135-146
Author(s):  
Catrin Heite ◽  
Veronika Magyar-Haas
Keyword(s):  
Social Studies ◽  
Social Construction ◽  
Well Being ◽  
Social Contexts ◽  
Living Environment ◽  
Social Actors ◽  
The Social ◽  
The Family ◽  
Cultural Embeddedness

Analogously to the works in the field of new social studies of childhood, this contribution deals with the concept of childhood as a social construction, in which children are considered as social actors in their own living environment, engaged in interpretive reproduction of the social. In this perspective the concept of agency is strongly stressed, and the vulnerability of children is not sufficiently taken into account. But in combining vulnerability and agency lies the possibility to consider the perspective of the subjects in the context of their social, political and cultural embeddedness. In this paper we show that what children say, what is important to them in general and for their well-being, is shaped by the care experiences within the family and by their social contexts. The argumentation for the intertwining of vulnerability and agency is exemplified by the expressions of an interviewed girl about her birth and by reference to philosophical concepts about birth and natality.

scholarly journals 407 - The Baycrest Quick-Response Caregiver Tool: The Role for a New Tool for Caregivers of Persons with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 123-123
Author(s):  
Ken Schwartz ◽  
Robert Madan ◽  
Anna Berall ◽  
Marsha Natadira ◽  
Anna Santiago
Keyword(s):  
Family Caregivers ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Well Being ◽  
Moderate Degree ◽  
Quick Response ◽  
Care Providers ◽  
High Level ◽  
Person With Dementia ◽  
The Impact

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

scholarly journals The impact of the COVID-19 pandemic on socio-economic and sustainability

2021 ◽  
Author(s):  
Xueli Wei ◽  
Lijing Li ◽  
Fan Zhang
Keyword(s):  
World Economy ◽  
Social Economy ◽  
Secondary Data ◽  
Well Being ◽  
Cross Sectional ◽  
The Social ◽  
The World ◽  
The Status ◽  
Sectional Analysis ◽  
The Impact

Pumping elephantThe COVID-19 pandemic has adversely affected the lives of people around the world in millions of ways . Due to this severe epidemic, all countries in the world have been affected by all aspects, mainly economic. It is widely discussed that the COVID-19 outbreak has affected the world economy. When considering this dimension, this study aims to examine the impact of the COVID-19 pandemic on the world economy, socio-economics, and sustainability. In addition, the research focuses on multiple aspects of social well-being during the pandemic, such as employment, poverty, the status of women, food security, and global trade. To this end, the study used time series and cross-sectional analysis of the data. The second-hand data used in this study comes from the websites of major international organizations. From the analysis of secondary data, the conclusion of this article is that the impact of the pandemic is huge. The main finding of the thesis is that the social economy is affected by the pandemic, causing huge losses in terms of economic well-being and social capital.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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