Living With Early-Onset Dementia in China: Through a Person-Centered Care Lens

Abstract We conducted semi-structured interviews with 35 dyads of persons with early-onset dementia (EOD) and their primary informal care partners to explore their dyadic experiences of living EOD in Shanghai, China. Many of them are in their 50s and still need to make familial, financial, and social commitments. They experienced significant disruptions of their "normal" family life and family dynamics, social stigma, and felt marginalized when there was very limited age-appropriate support for them. During COVID-19 pandemic, many persons with EDO and their care partners had decreased social networking opportunities, physical exercises and experienced an increased level of social isolation. The pandemic further complicated their family dynamics, relationships, and communications. Care partners used their strengths to adaptively deal with multiple challenges, cope with the stress, social isolation, and normalize their family life by facilitating collaborative work with persons with EOD.

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Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road

International Psychogeriatrics ◽

10.1017/s1041610211001013 ◽

2011 ◽

Vol 23 (9) ◽

pp. 1393-1404 ◽

Cited By ~ 61

Author(s):

Deliane van Vliet ◽

Marjolein E. de Vugt ◽

Christian Bakker ◽

Raymond T. C. M. Koopmans ◽

Yolande A. L. Pijnenburg ◽

...

Keyword(s):

Social Context ◽

Health Care Professionals ◽

Early Onset ◽

Late Onset ◽

Structured Interviews ◽

Early Onset Dementia ◽

The Social ◽

The Family ◽

Constant Comparative Analysis ◽

Financial Issues

ABSTRACTBackground: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.Methods: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.Results: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.Conclusion: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals’ inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

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Family Dynamics and Legal Change: Empirical Sociology in Search of a General Theory on the Effects of Law on Family Life

Journal of Comparative Family Studies ◽

10.3138/jcfs.12.4.397 ◽

1981 ◽

Vol 12 (4) ◽

pp. 397-412 ◽

Cited By ~ 1

Author(s):

Bernd Buchhofer ◽

Klaus A. Ziegert

Keyword(s):

General Theory ◽

Family Life ◽

Family Dynamics ◽

Legal Change ◽

Empirical Sociology

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The Lived Experiences of Stigmatization in the Process of HIV Status Disclosure among People Living with HIV in Taiwan

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18105089 ◽

2021 ◽

Vol 18 (10) ◽

pp. 5089

Author(s):

Chia-Hui Yu ◽

Chu-Yu Huang ◽

Nai-Ying Ko ◽

Heng-Hsin Tung ◽

Hui-Man Huang ◽

...

Keyword(s):

Lived Experiences ◽

Healthcare Professionals ◽

Social Stigma ◽

People Living With Hiv ◽

Hiv Status ◽

Structured Interviews ◽

Two Phases ◽

Hiv Status Disclosure ◽

Living With Hiv ◽

Status Disclosure

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.

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Disability, Human Resources and Behavioral Economics: The Labour Inclusion Case of Ilunion Hotels of the Costa del Sol (Spain)

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18157932 ◽

2021 ◽

Vol 18 (15) ◽

pp. 7932

Author(s):

Marco Antonio Cruz-Morato ◽

Carmen Dueñas-Zambrana ◽

Josefa García-Mestanza

Keyword(s):

Behavioral Economics ◽

Stress Responses ◽

Social Inclusion ◽

Social Stigma ◽

People With Disabilities ◽

Professional Activity ◽

Specific Situation ◽

Structured Interviews ◽

Case Study Methodology ◽

The Social

The situation of labour inclusion of people with disabilities in Spain is still too negative, in spite of the different efforts carried out by public and private sector. Previous research points to social discrimination as one of the main causes of the situation. Ilunion Hotels is one of the most important hotel companies in Spain focused on labour inclusion of people with disabilities. The objective of this paper is to explore the social inclusion case of Ilunion Hotels of the Costa del Sol, the actions that they have developed to improve the labour integration of this collective, based on a behavioral economics theoretical model (with a high relevance of the influence of social stigma, stress theories and coping to stress responses). We look into the specific situation of two of the three hotels developed as Special Employment Centres (sheltered employment contexts defined by Spanish legislation) and the possible impact of their Support Units for Professional Activity. Case study methodology is considered the most appropriate, according to the research objective, supported by semi-structured interviews with the hotel managers. The results show that, although Special Employment Centres are effective in improving labour integration in the short term and could contribute to change the long-term social perspectives about workers with disabilities, they could be also reinforcing the social stigma existing in the ordinary market.

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Experience and expression of social isolation by inner-city high-rise residents

Housing Care and Support ◽

10.1108/hcs-11-2013-0021 ◽

2014 ◽

Vol 17 (3) ◽

pp. 151-166 ◽

Cited By ~ 7

Author(s):

Love M. Chile ◽

Xavier M. Black ◽

Carol Neill

Keyword(s):

Older Adults ◽

Inner City ◽

Social Isolation ◽

Age Groups ◽

Evidence Base ◽

Structured Interviews ◽

Content Type ◽

High Rise ◽

Starting Point ◽

Health And Social Care

Purpose – The purpose of this paper is to examine the significance of social isolation and the factors that create social isolation for residents of inner-city high-rise apartment communities. We critically examine how the physical environment and perceptions of safety in apartment buildings and the inner-city implicate the quality of interactions between residents and with their neighbourhood community. Design/methodology/approach – The authors used mixed-methods consisting of survey questionnaires supplemented by semi-structured interviews and focus group discussions using stratified random sampling to access predetermined key strata of inner-city high-rise resident population. Using coefficient of correlation we examine the significance of the association between social isolation, age and ethnicity amongst Auckland's inner-city high-rise residents. Findings – The authors found the experience and expression of social isolation consistent across all age groups, with highest correlation between functional social isolation and “being student”, and older adults (60+ years), length of tenure in current apartment and length of time residents have lived in the inner-city. Research limitations/implications – As a case study, we did not seek in this research to compare the experience and expressions of social isolation in different inner-city contexts, nor of inner-city high-rise residents in New Zealand and other countries, although these will be useful areas to explore in future studies. Practical implications – This study is a useful starting point to build evidence base for professionals working in health and social care services to develop interventions that will help reduce functional social isolation amongst young adults and older adults in inner-city high-rise apartments. This is particularly important as the inner-city population of older adults grow due to international migration, and sub-national shifts from suburbs to the inner-cities in response to governmental policies of urban consolidation. Originality/value – By identifying two forms of social isolation, namely functional and structural social isolation, we have extended previous analysis of social isolation and found that “living alone” or structural social isolation did not necessarily lead to functional social isolation. It also touched on the links between functional social isolation and self-efficacy of older adults, particularly those from immigrant backgrounds.

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“I Spent Most of Freshers in my Room”—A Qualitative Study of the Social Experiences of University Students on the Autistic Spectrum

Journal of Autism and Developmental Disorders ◽

10.1007/s10803-021-05125-2 ◽

2021 ◽

Author(s):

Helen Goddard ◽

Anna Cook

Keyword(s):

University Students ◽

Social Isolation ◽

Social Life ◽

Social Experiences ◽

Mental Wellbeing ◽

Structured Interviews ◽

Social Lives ◽

Social Events ◽

University Life ◽

The Impact

AbstractAutistic university students face extra challenges in both their academic and social life. Barriers to socialising appear to be less well understood and supported by universities than academic requirements. Semi-structured interviews were conducted with ten autistic university students to explore their social experiences. Questions explored their social experiences, satisfaction with social life, disclosure of ASD to others, and the impact of mental wellbeing on university life. Thematic analysis indicated most participants were unsatisfied with their social lives and experienced mental health issues. Factors exacerbating social isolation included lack of suitable social events, lack of social support and feeling unable to disclose to peers. Factors which reduced social isolation included joining an autism or special interest society and receiving social mentoring.

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Profiles of Loneliness and Social Isolation in Physically Active and Inactive Older Adults in Rural England

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18083971 ◽

2021 ◽

Vol 18 (8) ◽

pp. 3971

Author(s):

Jolanthe de Koning ◽

Suzanne H. Richards ◽

Grace E. R. Wood ◽

Afroditi Stathi

Keyword(s):

Physical Activity ◽

Older Adults ◽

Social Isolation ◽

Physical Environment ◽

Vigorous Physical Activity ◽

Social Contact ◽

Physical Activity Behaviour ◽

Rural Setting ◽

Structured Interviews ◽

Physically Active

Objective: Loneliness and social isolation are associated with higher risk of morbidity and mortality and physical inactivity in older age. This study explored the socioecological context in which both physically active and inactive older adults experience loneliness and/or social isolation in a UK rural setting. Design: A mixed-methods design employed semi structured interviews and accelerometer-measured moderate-to-vigorous physical activity (MVPA). Interviews explored the personal, social and environmental factors influencing engagement with physical activities, guided by an adapted-socioecological model of physical activity behaviour. Findings: Twenty-four older adults (MeanAge = 73 (5.8 SD); 12 women) were interviewed. Transcripts were thematically analysed and seven profiles of physical activity, social isolation and loneliness were identified. The high-MVPA group had established PA habits, reported several sources of social contact and evaluated their physical environment as activity friendly. The low MVPA group had diverse experiences of past engagement in social activities. Similar to the high MVPA, they reported a range of sources of social contact but they did not perceive the physical environment as activity friendly. Conclusions: Loneliness and/or social isolation was reported by both physically active and inactive older adults. There is wide diversity and complexity in types and intensity of PA, loneliness and social isolation profiles and personal, social and environmental contexts.

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