Friendship and Loneliness Among People Living With Dementia: Toward Community and Shared Humanity

Abstract An increasing number of people living with dementia (PLWD) age in community. In North America, this number ranges from 61-81% of the total number of PLWD. As many as one in three PLWD do not live with a care partner. Since most PLWD do not drive, many may spend a significant proportion of time within half a mile of their homes. Yet, the neighbourhood may or may not provide “ways of being in the world that are more accepting and embracing of the kinds of disruptions that dementia can produce” (Hillman & Latimer, 2017). To support continued social participation, meaningful everyday networks are required. PLWD and care partners may identify more or less strongly with a community depending on their position in the network, its spaces, and activities. According to Nancy (1991), “community” has been conjured as an antidote to the loneliness of the human condition, which explains its allure. In response, Costello (2014) argued that “community” requires one to constantly try and “fall short” in caring for another’s changing experiences. The value of a community thus depends on the quality of its friendships – the ability of otherwise lonely individuals to empathize – which may be threatened by challenges to PLWD’s personhood. This symposium brings together expertise in community gerontology, philosophy, and neuropsychology to advance current conceptualizations of personhood in community amid cognitive decline. These will be discussed in relation to lived experiences, with the aim to inform future research and practice of dementia care and prevention in community.

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How to improve diversity in patient and public involvement

British Journal of Hospital Medicine ◽

10.12968/hmed.2021.0176 ◽

2021 ◽

pp. 1-8

Author(s):

Rebecca Golenya ◽

George D Chloros ◽

Michalis Panteli ◽

Peter V Giannoudis ◽

Anthony Howard

Keyword(s):

Lived Experiences ◽

Public Involvement ◽

Healthcare Professionals ◽

Patient And Public Involvement ◽

Future Research ◽

Barriers To Participation ◽

The Public ◽

Common Barriers ◽

Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

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To Make a Choice You Should Know The Option Physiological and Psychological Contribution of the Female Component in National Security and Intelligence

Security science journal ◽

10.37458/ssj.2.1.3 ◽

2021 ◽

Vol 2 (1) ◽

pp. 36-51

Author(s):

Sabrina Magris

Keyword(s):

National Security ◽

Intelligence Community ◽

Left Behind ◽

The World ◽

Two Factors ◽

Female Component ◽

Near Future ◽

Ways Of Being

The paper addresses the importance of the role of women in Intelligence and National Security with the specific purpose to highlight the quality of female contribution in all different domains. The world is changing and in this change, Intelligence risks being left behind as never before. An epic evolution and change are underway that will upset ways of being and ways of thinking. All this not suddenly and all this without realizing it if not after the fact. The world is changing, women “are gain the upper hand” taking over also numerically and it is not realized that a change must happen in the field of Intelligence with a space left to women, not because they are women but because of their abilities. In all domains, from strategic to an operational one. Blindness to change that many Agencies are having. And those who are making changes often do so because they are obliged by the rules but not by evaluating the concrete capability of individuals. Two factors risk being explosive if no action is taken. The paper highlights the physiological and psychological contribution of the female component in the National Security and Intelligence work, and why diversity is scientifically important to successfully conduct operational and strategic tasks. It also describes the existing lack of models, how to enlarge the interest of young girls to join the Intelligence Community, and a look into the near future regarding the training and the recruitment processes with specific regards to women.

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Staffing System Management: Evidences from Singapore

International Journal of Human Resource Studies ◽

10.5296/ijhrs.v7i2.11112 ◽

2017 ◽

Vol 7 (2) ◽

pp. 136

Author(s):

Mussie T. Tessema ◽

Kubilay Gok ◽

Alex Ngoma ◽

Mengsteab Tesfayohannes ◽

Gerry V. Fernando

Keyword(s):

Public Service ◽

Research Direction ◽

Future Research ◽

System Management ◽

Critical Factors ◽

Organization Level ◽

The World ◽

Practical Implications

This paper uses Singapore as a case study to illustrate how staffing policies and practices affect the quality of the workforce which ultimately influence performance at employee and organization level. It reveals that Singapore public service has been able to put in place most of the ‘critical factors’ for an effective staffing system management. The presence of those critical factors have played an important role in making Singapore to be one of the most effective public services in the world. Finally, it forwards theoretical and practical implications of the study and future research direction.

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The experience of care partners of patients with Parkinson’s disease psychosis

PLoS ONE ◽

10.1371/journal.pone.0248968 ◽

2021 ◽

Vol 16 (3) ◽

pp. e0248968

Author(s):

Sneha Mantri ◽

Emily Klawson ◽

Steven Albert ◽

Robyn Rapoport ◽

Chelle Precht ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Lived Experiences ◽

Emotional Reactions ◽

Medical System ◽

Telephone Interviews ◽

Experience Of Care ◽

Sources Of Knowledge ◽

Care Partners

Background Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. Objective To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. Methods This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. Results Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. Conclusions This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

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Quality of Mobile Apps for Care Partners of People with Alzheimer’s Disease and Related Dementias: Mobile App Rating Scale Evaluation (Preprint)

10.2196/preprints.33863 ◽

2021 ◽

Author(s):

Nicole E Werner ◽

Janetta C Brown ◽

Priya Loganathar ◽

Richard J Holden

Keyword(s):

Rating Scale ◽

Mobile Apps ◽

Mobile App ◽

Future Research ◽

App Development ◽

Care Partners ◽

Acceptable Quality ◽

The Us ◽

Google Play

BACKGROUND The over 11 million care partners in the US who provide care to people living with Alzheimer’s disease and related dementias (ADRD) cite persistent and pervasive unmet needs related to all aspects of their caregiving role. The proliferation of mobile applications (apps) for care partners has potential to meet the care partners’ needs, but the quality of apps is unknown. OBJECTIVE The present study aimed to 1) evaluate the quality of publicly available apps for care partners of people living with ADRD and 2) identify design features of low- and high-quality apps to guide future research and app development. METHODS We searched the US Apple and Google Play app stores with the criteria that the app needed to be 1) available in US Google play or Apple app stores, 2) directly accessible to users “out of the box”, 3) primarily intended for use by an informal (family, friend) caregiver or caregivers of a person with dementia. The included apps were then evaluated using the Mobile App Rating Scale (MARS), which includes descriptive app classification and rating using 23 items across five dimensions: engagement, functionality, aesthetics, information, and subjective quality. Next, we computed descriptive statistics for each rating. To identify recommendations for future research and app development, we categorized rater comments on the score driving factors for each item and what the app could have done to improve the score for that item. RESULTS We evaluated 17 apps (41% iOS only, 12% Android only, 47% both iOS and Android). We found that on average, the apps are of minimally acceptable quality. Although we identified apps above and below minimally acceptable quality, many apps had broken features and were rated as below acceptable for engagement and information. CONCLUSIONS Minimally acceptable quality is likely insufficient to meet care partner needs. Future research should establish minimum quality standards across dimensions for mobile apps for care partners. The design features of high-quality apps we identified in this research can provide the foundation for benchmarking those standards.

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MEANINGFUL ENGAGEMENT AND QUALITY OF LIFE AMONG ASSISTED LIVING RESIDENTS WITH DEMENTIA: EMERGENT FINDINGS

Innovation in Aging ◽

10.1093/geroni/igz038.3430 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S943-S944

Author(s):

Joy Ciofi ◽

Candace L Kemp ◽

Alexis A Bender ◽

Elisabeth O Burgess ◽

Jennifer C Morgan ◽

...

Keyword(s):

Quality Of Life ◽

Assisted Living ◽

Personal Characteristics ◽

Future Research ◽

Structured Interviews ◽

Care Partners ◽

Meaningful Engagement ◽

Physical Abilities ◽

Community Staff

Abstract This poster provides an overview of the aims, methods, and emergent findings from an ongoing five-year NIA-funded project (R01AG062310) examining meaningful engagement and quality of life among assisted living (AL) residents with dementia. The overall goal of this project is to determine how opportunities for meaningful engagement can best be recognized, created, and maintained for individuals with different dementia types and varying levels of functional ability. Guided by grounded theory, this qualitative study will involve 12 diverse AL communities in and around Atlanta, Georgia, USA. Presently, our interdisciplinary team is collecting data in four communities using ethnographic observations, semi-structured interviews, and resident record review. We are studying daily life in each community, following 30 resident participants, and actively recruiting and interviewing their formal and informal care partners. Based on ongoing analysis, we offer key emergent findings. First, meaningful engagement is highly individualized and dynamic. Differing personal interests, along with wide variations in cognitive and physical abilities, can present challenges for AL community staff and other care partners when trying to recognize what constitutes meaningful engagement for residents. Second, multiple complex factors interplay to shape the experience of meaningful engagement among persons living with dementia, such as personal characteristics, care partner background and training, AL community design and philosophy, and state/corporate regulations. Finally, flexibility and ‘meeting the resident where they are at’ appear to be critical to identifying and fostering meaningful engagement for persons living with dementia. We discuss the implications of these preliminary findings for translation, dissemination, and future research.

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Virtual exchange in the Asia-Pacific: research and practice

10.14705/rpnet.2020.47.9782490057788 ◽

2020 ◽

Keyword(s):

Best Practice ◽

Asia Pacific ◽

Pacific Region ◽

Asia Pacific Region ◽

Research And Practice ◽

Language And Culture ◽

The World ◽

Further Development

Virtual Exchange (VE) is of great import to language and culture teachers and researchers but is also gaining popularity in other fields. However, around the world and in the Asia-Pacific region in particular, the number of exchanges is not high and the quality of those that exist needs to continue to improve. It is essential that the latest research and best practice can be disseminated to ensure VE develops further. In this edited volume, various researchers and practitioners provide firsthand perspectives, well-researched accounts of current situations, ideas for future exchanges, and areas in need of further development. We hope it will be of use to the VE practitioner and researcher alike.

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Meaning of Sport to Adults with Physical Disabilities: A Disability Sport Camp Experience

Sociology of Sport Journal ◽

10.1123/ssj.18.1.95 ◽

2001 ◽

Vol 18 (1) ◽

pp. 95-114 ◽

Cited By ~ 42

Author(s):

Candace Ashton-Shaeffer ◽

Heather J. Gibson ◽

Cari E. Autry ◽

Carolyn S. Hanson

Keyword(s):

Lived Experiences ◽

Physical Disabilities ◽

Future Research ◽

Comparison Analysis ◽

Disability Sport ◽

Research And Practice ◽

Data Surveillance ◽

Women With Physical Disabilities

This study investigated the experiences of nine men and six women with physical disabilities who participated in an adult disability sport camp. Using in-depth semistructured interviewing, camp participants were asked to reflect on their lived experiences and the significance of participating in sport at the camp. Themes and subthemes were developed from the interviews and transcripts using constant comparison. Analysis was guided by a Foucauldian framework and informed by the work of poststructural feminists. Three themes emerged from the data: surveillance, resistance and empowerment, which described the experiences of these individuals with sport prior to, during, and after camp. The implications of this study for future research and practice are discussed.

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Identidad personal y narración: una lectura

Theoría. Revista del Colegio de Filosofía ◽

10.22201/ffyl.16656415p.2007.18.340 ◽

2007 ◽

pp. 87-92

Author(s):

María Rosa Palazón

Keyword(s):

Personal Identity ◽

Ego Identity ◽

The Other ◽

The World ◽

Alter Ego ◽

Ways Of Being ◽

The Way

In Soi-même comme un autre, Ricoeur defines the personal identity as singular; so, it is the way in which every individual structures a sediment of experiences and ways of being in the world common within a chronotop, and, a personalized way of reacting to circumstance challenges. Commonly, due to what is shared, the other is an alter ego. Identity is a holon which can not be atomized, as the puzzling cases or Musil’s L’Homme sans qualités intend to do. Ricoeur splits the identity in “mêmeté” and “ipséité”. The first one designates a center of acummulative experiences; the ipséité, the other from the soi-même, that is, the historical or changing quality of the mêmeté. With Bremond and Greimas theories, Ricoeur attributes to the literary narration the best examples of the dialectics between mêmeté and ipséité. Besides, with McIntyre, he considers literary narration as the best way to formulate ethic judgements from the described experiences.

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The Experience of Care Partners of Patients with Parkinsonism and Psychosis

10.1101/2020.12.28.20248943 ◽

2021 ◽

Author(s):

Sneha Mantri ◽

Emily Klawson ◽

Steven Albert ◽

Robyn Rapoport ◽

Chelle Precht ◽

...

Keyword(s):

Quality Of Life ◽

Lived Experiences ◽

Emotional Reactions ◽

Medical System ◽

Medical Professionals ◽

Telephone Interviews ◽

Experience Of Care ◽

Sources Of Knowledge ◽

Care Partners

ABSTRACTBackgroundParkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP.ObjectiveTo understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.MethodsThis was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed.ResultsNine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers.ConclusionsThis qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

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