Themes describing social isolation in family caregivers of people living with dementia: A scoping review

Dementia ◽  
2021 ◽  
pp. 147130122110562
Author(s):  
Joonyup Lee ◽  
Sol Baik ◽  
Todd Becker ◽  
Jihyang Cheon
Keyword(s):  
Social Networks ◽  
Family Caregivers ◽  
Social Isolation ◽  
Scoping Review ◽  
Research Question ◽  
Social Supports ◽  
Psychological State ◽  
Policy And Practice ◽  
Unpaid Care ◽  
People With Dementia

Introduction The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation in their family caregivers has not received as much scholarly attention. This scoping review sought to address this dearth of research through the following research question: “What are themes, concepts, or constructs that describe social isolation of family caregivers for people living with dementia?”. Method An electronic search was conducted in PubMed, PsycInfo, and Scopus, using the following Boolean search phrase: dementia AND “social isolation” AND (caregiver OR carers). Content analysis was conducted to identify relevant themes. Findings The initial search yielded 301 studies. Through screening processes, 13 studies were eligible for review. Based on a synthesis of evidence, five themes emerged from the data: disease progression, psychological state, social networks, social supports, and technology. Discussion This review demonstrates that caregiving is related to social isolation in family caregivers of people living with dementia. The experience of social isolation was related to the progression of dementia, psychological states, and lack of supports. In contrast, social supports, social networks, and using technology may reduce social isolation. Identifying themes provides policy and practice implications, such as using information and communication technology to create and redefine social networks.

scholarly journals Impact of Social Isolation on People with Dementia and Their Family Caregivers

2021 ◽  
pp. 1-11
Author(s):  
Lílian Viana dos Santos Azevedo ◽  
Ismael Luis Calandri ◽  
Andrea Slachevsky ◽  
Héctor Gastón Graviotto ◽  
Maria Carolina Santos Vieira ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Clinical Symptoms ◽  
Memory Function ◽  
South American ◽  
Severe Dementia ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Severity Of Dementia

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.

Using a Smartphone as a Track and Fall Detector

2015 ◽  
pp. 272-295
Author(s):  
Chia-Yin Ko ◽  
Fang-Yie Leu ◽  
I-Tsen Lin
Keyword(s):  
Social Networks ◽  
Emergency Medical Services ◽  
Real Time ◽  
Family Caregivers ◽  
Fall Detection ◽  
The Elderly ◽  
Elderly Individual ◽  
Communication Services ◽  
People With Dementia

This chapter proposes a smartphone-based system for both indoor and outdoor monitoring of people with dementia. The whole system comprises wandering detection, safety-zone monitoring, fall detection, communication services, alert notifications, and emergency medical services. To effectively track the elderly, the proposed system uses a smartphone camera to take real-time pictures along the user's path as he or she moves about. Those photos, accompanied with time and GPS signals, are delivered to and stored on the Cloud system. When necessary, family caregivers can download those data to quickly find a way to help the elderly individual. Additionally, this study uses tri-axial accelerometers to examine falls. To assure individuals' data is safeguarded appropriately, an RSA method has been adopted by the system to encrypt stored data. This reliable and minimally intrusive system provides people with dementia with an opportunity to maintain their social networks and to improve their quality of lives.

scholarly journals Protocol for a scoping review on the methods for engaging long-term care residents with dementia in research and guideline development

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e051602
Author(s):  
Caitlin McArthur ◽  
Adria Quigley ◽  
Rebecca Affoo ◽  
Marie Earl ◽  
Elaine Moody
Keyword(s):  
Scoping Review ◽  
Patient Engagement ◽  
Long Term Care ◽  
Guideline Development ◽  
Research Question ◽  
Grey Literature ◽  
Optimal Strategies ◽  
Term Care ◽  
People With Dementia

IntroductionPatient engagement is important when developing health guidelines to ensure high-quality and patient-centred recommendations. However, patient engagement in research and guideline development remains suboptimal, particularly for vulnerable populations, including residents with dementia living in long-term care (LTC) who are often not included in research and guideline development because of perceived and actual challenges with their health, memory, concentration and communication. Optimal strategies and methods for engaging LTC residents with dementia in research and guideline development remain unknown.Methods and analysisWe will conduct a scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension to answer the research questions: (1) What methods have been used to engage LTC residents with dementia in research and guideline development? (2) What are the outcomes of resident engagement? (3) What are the barriers and facilitators to resident engagement? Systematic searches for peer-reviewed articles will be conducted in: Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), CINAHL (EBSCO), Medline (OVID), Embase (Elsevier), Web of Science, and Cochrane Database and in grey literature. Two team members will screen articles and extract data. Results will be presented according to the research question they address. We will engage stakeholders including residents, family members, healthcare providers and representatives from relevant organisations throughout the study.Ethics and disseminationThe scoping review will synthesise what is known about resident engagement in research and guideline development. It may identify gaps in the literature about the optimal methods to engage residents in performing research and developing guidelines and reveal opportunities for new methods. The results will be helpful for researchers and policy-makers seeking to develop guidelines and researchers engaging in topics that reflect the priorities and experiences of people with dementia. Results of the scoping review will be disseminated via publication in a peer-reviewed journal and conference presentations, and a one-page lay summary will be shared with our engaged stakeholders.

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.

scholarly journals ‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia

2019 ◽  
pp. 1-26 ◽  
Author(s):  
Elzana Odzakovic ◽  
Agneta Kullberg ◽  
Ingrid Hellström ◽  
Andrew Clark ◽  
Sarah Campbell ◽  
...  
Keyword(s):  
Social Networks ◽  
International Study ◽  
Community Dwelling ◽  
Living Alone ◽  
Structured Interviews ◽  
Policy And Practice ◽  
Multiple Data ◽  
People With Dementia ◽  
Study Sites ◽  
Network Mapping

AbstractThe extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.

Using a Smartphone as a Track and Fall Detector

2016 ◽  
pp. 922-944
Author(s):  
Chia-Yin Ko ◽  
Fang-Yie Leu ◽  
I-Tsen Lin
Keyword(s):  
Social Networks ◽  
Emergency Medical Services ◽  
Real Time ◽  
Family Caregivers ◽  
Fall Detection ◽  
The Elderly ◽  
Elderly Individual ◽  
Communication Services ◽  
People With Dementia

This chapter proposes a smartphone-based system for both indoor and outdoor monitoring of people with dementia. The whole system comprises wandering detection, safety-zone monitoring, fall detection, communication services, alert notifications, and emergency medical services. To effectively track the elderly, the proposed system uses a smartphone camera to take real-time pictures along the user's path as he or she moves about. Those photos, accompanied with time and GPS signals, are delivered to and stored on the Cloud system. When necessary, family caregivers can download those data to quickly find a way to help the elderly individual. Additionally, this study uses tri-axial accelerometers to examine falls. To assure individuals' data is safeguarded appropriately, an RSA method has been adopted by the system to encrypt stored data. This reliable and minimally intrusive system provides people with dementia with an opportunity to maintain their social networks and to improve their quality of lives.

scholarly journals Alzheimer's Association Project VITAL: A Florida Statewide Initiative Using Technology to Impact Social Isolation and Well-Being

2021 ◽  
Vol 9 ◽  
Author(s):  
Lorna E. Prophater ◽  
Sam Fazio ◽  
Lydia T. Nguyen ◽  
Gizem Hueluer ◽  
Lindsay J. Peterson ◽  
...  
Keyword(s):  
Online Education ◽  
Family Caregivers ◽  
Social Isolation ◽  
Social Engagement ◽  
Well Being ◽  
Care Staff ◽  
Project Echo ◽  
Learning Platform ◽  
People With Dementia ◽  
The Impact

Lack of social engagement and the resulting social isolation can have negative impacts on health and well-being, especially in senior care communities and for those living with dementia. Project VITAL leverages technology and community resources to create a network for connection, engagement, education, and support of individuals with dementia and their caregivers, and explores the impact of these interventions in reducing feelings of social isolation and increasing mood among residents during the COVID-19 pandemic. Through two phases, 600 personalized Wi-Fi-enabled iN2L tablets were distributed to 300 senior care communities (55% assisted living communities, 37% skilled nursing communities, 6% memory care communities, and 2% adult family-care homes) to connect and engage residents and their families. Different phases also included Project ECHO, a video-based learning platform, Alzheimer's Association virtual and online education and support for family caregivers, evidence-based online professional dementia care staff training and certification, and Virtual Forums designed to explore ways to build sustainable, scalable models to ensure access to support and decrease social isolation in the future. Tablet usage was collected over an 11-month period and an interim survey was designed to assess the effectiveness of the tablets, in preventing social isolation and increasing mood among residents during the COVID-19 pandemic. A total of 105 care community staff (whose community used the tablets) completed the survey and overall, these staff showed a high level of agreement to statements indicating that residents struggled with loneliness and mood, and that the tablet was useful in improving loneliness and mood in residents and allowing them to stay in touch with family and friends. Additional positive results were seen through a variety of other responses around the tablets and Project ECHO. Overall, the tablets were shown to be an effective way to engage residents and connect them with friends and family, as well as being a useful tool for staff members. A third phase is currently underway in the homes of people with dementia and their family caregivers, which includes tablets and direct access to Alzheimer's Association virtual and online education and support programs.

The social lives of rural Australian nursing home residents

2011 ◽  
Vol 32 (2) ◽  
pp. 329-353 ◽  
Author(s):  
GLENDA PARMENTER ◽  
MARY CRUICKSHANK ◽  
RAFAT HUSSAIN
Keyword(s):  
Social Networks ◽  
Nursing Home ◽  
New England ◽  
Social Isolation ◽  
Nursing Home Residents ◽  
Policy And Practice ◽  
Close Family Member ◽  
Social Lives ◽  
Rural Nursing ◽  
Wide Range

ABSTRACTContact with family and friends, in the form of visiting, is very important to the quality of the lives of rural nursing home residents. However, there has been little recent research that examines the frequency and determinants of visits to rural nursing homes and none in the rural Australian context. This study aimed to address this gap in the literature. A telephone survey with a close family member (N=257) of each participating resident in the rural New England area of New South Wales, Australia gathered data about 3,738 people who formed the potential social networks of these residents. This study found that the wider, potential, social networks of rural nursing home residents comprised approximately 17 people and involved a wide range of family and friends. However, their actual social networks consisted of approximately two females, daughters and friends, who had high-quality relationships with the resident and who visited at least once per month. In contrast to previous assertions that nursing home residents have robust support from their family and friends, the actual social networks of these residents have dwindled considerably over recent years, which may place them at risk of social isolation. This study has implications for nursing home policy and practice and recommendations for addressing the risk of social isolation that rural nursing home residents face are made.

scholarly journals Exploring resilience and well-being of family caregivers of people with dementia exposed to mandatory social isolation by COVID-19

Dementia ◽  
2021 ◽  
pp. 147130122110421
Author(s):  
David Sánchez-Teruel* ◽  
María Auxiliadora Robles-Bello* ◽  
Mariam Sarhani-Robles ◽  
Aziz Sarhani-Robles
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Emotional Regulation ◽  
Online Survey ◽  
Health Care Systems ◽  
Well Being ◽  
Physical And Mental Health ◽  
Predictive Variables ◽  
People With Dementia ◽  
Care Systems

Background The COVID-19 pandemic has raised questions about the resilience of health care systems worldwide. In this regard, one group of people whose physical and mental health has been affected has been family caregivers of people with dementia. Objective This study aims to identify the variables that predict a high degree of well-being in family caregivers of people with dementia during this period of mandatory lockdown. Methods A total of 310 respondents participated in an online survey (266 women and 44 men) from various regions in Spain, aged between 20 and 73 years old (M = 46.45; SD = 15.97), and all were family members. Results The results showed that there were notable differences in all the protective variables, together with a significant strong positive relationship between well-being and resilience ( r = 0.92; p < 0.01) and with coping strategies ( r = 0.85; p < 0.01), and there were also some significant negative relationships between well-being and difficulties in emotional regulation (ρ = −.78; p < 0.01). The most predictive variables of a higher level of well-being included the type of dementia (β = 1.19; CI (95%) = 1.01-1.29; p< 0.01), living in a large house (β = 0.97; CI (95%) =. 23-0.98; p < 0.01), social support as a coping strategy (β = 1.27; CI (95%) = 1.21-1.29; p < 0.01) and mainly resilience (β = 1.34; CI (95%) = 1.30-1.37; p < 0.01). Discussion We discuss the importance of promoting higher levels of resilience through the development of protective psychosocial variables in caregivers of people with dementia exposed to situations of mandatory social isolation as a modulator of the psychosocial well-being of these family caregivers.

Characteristics of the built environment for people with dementia in East and Southeast Asian nursing homes: a scoping review

2017 ◽  
Vol 30 (4) ◽  
pp. 469-480 ◽  
Author(s):  
Joanna Sun ◽  
Richard Fleming
Keyword(s):  
Nursing Homes ◽  
Built Environment ◽  
Southeast Asia ◽  
Scoping Review ◽  
Assessment Tool ◽  
Research Question ◽  
Design Development ◽  
People With Dementia ◽  
East And Southeast Asia ◽  
Principles Of Design

ABSTRACTBackground:This scoping review explores the characteristics of the current built environment used to accommodate people with dementia in East and Southeast Asia. It is structured around the eight principles of design found in the Environmental Audit Tool High-Care. In addition, the review examines the level of knowledge and other influences contributing to the development of nursing homes in the region.Methods:The review was carried out utilizing the methodological framework recommended by Arksey and O'Malley. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses provided an overarching structural framework for the reporting process and the Population, Intervention, Comparison, Outcomes, and Context framework defined the scope of the review and focused on the research question. Six databases were accessed for the search, and 1,846 publications between 2001 and 2015 were retrieved.Results:A total of 48 articles from 9 countries met the inclusion criteria. All articles presented discussions that fundamentally included at least one principle of design and with some including all principles. The most prevailing principle discussed, found in 59% of all the articles was the need for familiarity for residents in the environmental design of facilities.Conclusions:The review found that the eight principles of design, when applied with cultural sensitivity in countries in East and Southeast Asia can identify gaps in knowledge of the design for dementia enabling environments and suggest areas for improvement. An assessment tool based on the principles of design will be able to provide a guide for stakeholders in the design, development, or modification of nursing home environments.

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