scholarly journals Strategies for Maintaining Friendship in Dementia

2021 ◽  
pp. 1-12
Author(s):  
M. Rebecca Genoe ◽  
Darla Fortune ◽  
Colleen Whyte
Keyword(s):  
Thematic Analysis ◽  
Family Members ◽  
Later Life ◽  
Constructivist Approach ◽  
People With Dementia ◽  
Related Stigma ◽  
Diagnosis Of Dementia ◽  
Ways Of Thinking

Abstract Although friendship is vital in later life, particularly amongst people who are living with dementia, little is known about how friendships are sustained following a diagnosis. Some research suggests that, because of dementia-related stigma, friendships dissolve following diagnosis; however, other researchers have shown that friendships can persist in dementia. The purpose of this article is to explore strategies that people with dementia and their friends (i.e., those who have been friends for at least 2 years) utilize to sustain their friendships. Following a constructivist approach, we interviewed people living with dementia, friends, and family members to better understand how friendships are maintained after a diagnosis of dementia. Data were analyzed using thematic analysis. An overarching theme, adapting to change, was generated. Participants adapted in several ways, including: (1) prioritizing friendship, (2) shifting ways of thinking about our friend/ship, and (3) addressing changes through practical strategies. These strategies helped maintain mutually beneficial, reciprocal friendships that were able to withstand changes that accompany a diagnosis of dementia.

scholarly journals Learning about COVID-19-related stigma, quarantine and isolation experiences in Finland

PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0247962
Author(s):  
Anna-Leena Lohiniva ◽  
Timothee Dub ◽  
Lotta Hagberg ◽  
Hanna Nohynek
Keyword(s):  
Thematic Analysis ◽  
Social Stigma ◽  
Family Members ◽  
Perceived Stigma ◽  
Health Concerns ◽  
Conflicting Information ◽  
The Everyday ◽  
Different Types ◽  
Related Stigma ◽  
Shed Light

Background The COVID-19 pandemic has intensely changed the everyday lives of people worldwide. This study explores the forms and outcomes of coronavirus and COVID-19-related social stigma and the experiences of people who were home quarantined or isolated in Finland during the spring 2020. The findings of this study can be used to improve support for those quarantined or isolated and to develop strategies to reduce the stigma associated with coronavirus and COVID-19. Methods The study is based on qualitative one-to-one interviews with households with at least two members and at least one PCR confirmed COVID-19 case. Recruitment took place via website or SMS messages sent to PCR confirmed cases in the capital area of Helsinki. Sampling was based on maximum variation to acquire different types of respondents. The framework of health stigma was used to develop question guides and analyze stigma. Quarantine and isolation experiences were explored through open-ended questions. The analysis was based on thematic analysis. Results The study included 64 participants from 24 households. Perceived stigma among respondents was driven by fear and blame for infection, and it manifested in various ways leading to a reluctance to disclose their coronavirus status to others. Self-stigma developed from conflicting information and advice about coronavirus and COVID-19 led to difficulties interacting with others outside of the house and reluctance to meet people after quarantine and isolation. Quarantine and isolation experiences included uncertainty, health concerns, and boredom. Communication with others in similar situations was perceived vital, whereas discussions with family members about worries and fears related to coronavirus and COVID-19 was not preferred. Conclusions This study shed light on the lives of those quarantined or isolated at home and provided a set of operational recommendations to minimize coronavirus and COVID-19-associated stigma and to reduce challenges faced by those in quarantine or isolation.

scholarly journals Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

2018 ◽  
Vol 28 (11) ◽  
pp. 1719-1734 ◽  
Author(s):  
Therése Bielsten ◽  
Reena Lasrado ◽  
John Keady ◽  
Agneta Kullberg ◽  
Ingrid Hellström
Keyword(s):  
Thematic Analysis ◽  
Collaborative Research ◽  
Literature Search ◽  
Hybrid Approach ◽  
Well Being ◽  
Self Management ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Three Phases

The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: (a) literature search of previous research related to well-being and couplehood in dementia; (b) interviews with couples with dementia based on the findings of the literature search; and (c) further authentication of the findings within expert groups of people with dementia and carers. For analysis of data, we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes “Home and Neighborhood,” “Meaningful Activities and Relationships,” “Approach and Empowerment,” and “Couplehood” with related subthemes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

Mobile phone apps’ support for people with mild dementia: A systematic review (Preprint)

2019 ◽  
Author(s):  
Leona Cilar ◽  
Lucija Gosak ◽  
Amanda Briggs ◽  
Klavdija Čuček Trifkovič ◽  
Tracy McClelland ◽  
...  
Keyword(s):  
Mobile Phone ◽  
Thematic Analysis ◽  
Daily Life ◽  
General Term ◽  
Cognitive Domain ◽  
Mild Dementia ◽  
Daily Life Activities ◽  
Human Needs ◽  
People With Dementia ◽  
System Usability Scale

BACKGROUND Dementia is a general term for various disorders characterized by memory impairment and loss of at least one cognitive domain. People with dementia are faced with different difficulties in their daily life activities (DLA). With the use of modern technologies, such as mobile phone apps – often called health apps, their difficulties can be alleviated. OBJECTIVE The aim of this paper was to systematically search, analyze and synthetize mobile phone apps designed to support people with mild dementia in daily life activities in two apps bases: Apple App Store and Google Play Store. METHODS A search was conducted in May 2019 following PRISMA recommendations. Results were analyzed and displayed as tables and graphs. Results were synthetized using thematic analysis which was conducted from 14 components, based on human needs for categorized nursing activities. Mobile phone apps were assessed for quality using the System Usability Scale. RESULTS A total of 15 mobile phone apps were identified applying inclusion and exclusion criteria. Five major themes were identified with thematic analysis: multi-component DLA, communication and feelings, recreation, eating and drinking, and movement. Most of the apps (73%) of the apps were not mentioned in scientific literature. CONCLUSIONS There are many mobile phone apps available in mobile phone markets for the support for people with mild dementia; yet only a few of them are focused on challenges in daily life activities. Most of the available apps were not evaluated nor assessed for quality.

scholarly journals The Voices of Persons Living With Dementia: Exploring Their Information Needs to Live Well

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 60-60
Author(s):  
Michelle Kimzey ◽  
Ramona Baucham ◽  
Chelsea Martin ◽  
Carol Howe
Keyword(s):  
Health Literacy ◽  
Health Information ◽  
Information Needs ◽  
Hybrid Approach ◽  
Convenience Sample ◽  
Health Decisions ◽  
People With Dementia ◽  
Care Partners ◽  
Diagnosis Of Dementia ◽  
Services And Supports

Abstract There are unique challenges and considerations when receiving the diagnosis of dementia. There are interventions, services, and supports for people with dementia and their care partners, yet they are often unknown, disconnected, and may not be widely available or easily accessible. Health literacy was defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Using a descriptive qualitative design, the purpose of this study was to describe how persons living with dementia and their care partners obtain, understand, and use information to make health decisions to live well with dementia. The convenience sample consisted of 28 care partners and 15 people living with dementia participating in 6 separate focus groups. To illuminate findings, data was analyzed using a hybrid approach (deductive followed by inductive). Four themes emerged deductively as persons gain health literacy in dementia (access, understand, appraise, and understand). The notable finding is the trend at diagnosis where they first are “seeking the expert” ,and as they move from dependence and gain understanding they are “becoming the expert”, and finally as they apply information they are “acting as the expert” for themselves and others. Engaging them in research not only gave them a voice but more importantly it influenced the health information that will be developed and implemented by them. These findings suggest there is a wealth of knowledge to be gained by persons living with dementia and their care partners.

scholarly journals Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

2021 ◽  
Vol 18 (8) ◽  
pp. 4123
Author(s):  
Aram Cho ◽  
Chiyoung Cha
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Univariate Analysis ◽  
Family Members ◽  
Capital City ◽  
Care Plan ◽  
Term Care ◽  
Health Promotion Behaviors ◽  
People With Dementia ◽  
Health Promotion Behavior

People adopt health promotion behaviors to promote their health as they interact within the environment. The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

scholarly journals Long-Term Effects of Abuse in Later Life Perpetrated by Family Members

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 444-445
Author(s):  
Naomi Meinertz ◽  
Pi-Ju Liu ◽  
Ron Acierno
Keyword(s):  
Social Support ◽  
Depressive Symptoms ◽  
Family Member ◽  
Older Adult ◽  
Family Members ◽  
Later Life ◽  
Adult Health ◽  
Long Term Effects ◽  
Long Term Impact

Abstract Abuse in later life could potentially lead to lower levels of social support, especially when perpetrated by family members who are charged with protecting the older adult in their care. Using both waves of the National Elder Mistreatment longitudinal data (wave one collected in 2008 and wave two in 2015; N=774), long-term effects of abuse (i.e., physical, emotional, sexual, and financial) on levels of social support, physical health, and clinical depressive symptoms for respondents at or above the age of 60 years were analyzed. A multivariate analysis of variance showed that respondents abused at wave one (n=261) by a family member (B=-0.55, p≤0.001), a spouse or ex-partner (B=-0.349, p=0.02), or a non-relative or stranger (B=-0.301, p=0.026) had lower levels of social support eight years later at wave two. Those abused by a family member at wave one also experienced higher levels of depressive symptoms at wave two (B=-0.187, p=0.01). Perpetrator type did not predict general health at wave two. These results emphasize the long-term impact of abuse on the lives of older adults and highlight the importance trusted relationships, such as with family members, have on older adult health and wellbeing.

Sensor e-textiles: person centered co-design for people with late stage dementia

2016 ◽  
Vol 20 (2) ◽  
pp. 76-85 ◽  
Author(s):  
Cathy Treadaway ◽  
Gail Kenning
Keyword(s):  
Design Process ◽  
Late Stage ◽  
Design Methodology ◽  
Design Research ◽  
Family Members ◽  
Sensory Properties ◽  
Content Type ◽  
People With Dementia ◽  
Grounded Practical Theory ◽  
The Moment

Purpose – The purpose of this paper is to present design research investigating the development of sensory textiles with embedded electronics to support the wellbeing of people with late stage dementia in residential care. Design/methodology/approach – The research presented is qualitative and uses a mixed method approach informed by grounded practical theory and positive design methodologies. It uses an inclusive and participatory co-design process involving people with dementia and their families with an interdisciplinary team of experts. Findings – Both the co-design process and the artefacts developed have been beneficial in supporting wellbeing. The textile artefacts have been found to soothe, distract and comfort people with dementia. They have also been shown to facilitate in the moment conversational bridges between family members and carers with persons with dementia. Research limitations/implications – The findings are based on a small cohort of participants, observational reports and descriptive accounts from family members and carers. Practical implications – The paper proposes ways in which simple hand-crafted textiles can be used beneficially to support the wellbeing of people with late stage dementia. It provides examples of how technology can be used to personalise and extend the sensory properties of the artefacts created. Social implications – It promotes an inclusive co-design methodology involving care professionals, carers and people with dementia with designers and technologists. Originality/value – The paper describes new ways of extending sensory properties of textiles through the integration of technology.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Growing Older

2010 ◽  
Vol 15 (5) ◽  
pp. 707-715 ◽  
Author(s):  
Lauren Terrill ◽  
Judith Gullifer
Keyword(s):  
Older Women ◽  
Thematic Analysis ◽  
Later Life ◽  
Structured Interviews

This study explored experiences of eight rural, Anglo-Australian women aged between 65 and 75 using semi-structured interviews. Thematic analysis revealed three prominent themes: (a) the free and busy me highlights the increased freedom in later life enabling choices regarding activities the women would like to engage in; (b) the secret is being positive and pragmatic emphasizes the importance of adopting a pragmatic acceptance of growing older; and (c) narratives of growth and stagnation highlights the pursuit of growth among older women in order to enhance the current self. Findings emphasize the construction of later life as one of liberation, resilience and growth.

The Validity of the Norwegian Version of the Cognitive Function Instrument

2018 ◽  
Vol 46 (3-4) ◽  
pp. 217-228 ◽  
Author(s):  
Mona Michelet ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Anne Lund ◽  
Guro Hanevold Bjørkløf ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Cognitive Function ◽  
Cognitive Decline ◽  
Reference Group ◽  
Area Under The Curve ◽  
The Self ◽  
Norwegian Version ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Proxy Version

Background/Aims: A timely diagnosis of dementia is important, and the Cognitive Function Instrument (CFI) is a newly developed instrument to screen for cognitive decline. The aim of this study was to evaluate the validity and internal consistency of the Norwegian version of the CFI. Methods: We included 265 participants with dementia, mild cognitive impairment (MCI), subjective cognitive impairment (SCI), and a reference group without subjective or assessed cognitive decline. The participants and their relatives answered the self- and proxy-rated versions of the CFI. Results: The Norwegian CFI had power to discriminate between people with dementia and with MCI, SCI, and the reference group. The proxy version had better power than the self-rated version in our participants (area under the curve [AUC] proxy-rated varying from 0.79 to 0.99, AUC self-rated varying from 0.56 to 0.85). Conclusion: The Norwegian CFI was found to be a useful, valid, and robust instrument.

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