Perceptions of reciprocity in friendship by community dwelling people with mild to moderate dementia

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 2107-2121 ◽  
Author(s):  
Jennifer Perion ◽  
Victoria Steiner
Keyword(s):  
Social Interaction ◽  
Qualitative Study ◽  
College Education ◽  
Phenomenological Approach ◽  
Community Dwelling ◽  
Psychological Benefits ◽  
Face To Face ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Positive Social Interaction

Positive social interaction is important for people with dementia, providing emotional and psychological benefits. Friendships may retain more reciprocal balance than caregiver relationships, which often become one-sided. This qualitative study investigates the meaning that friendship has for people with dementia, and how reciprocity relates to positive social identity. Individuals experiencing dementia were recruited from programs sponsored by a Midwest chapter of The Alzheimer’s Association. In a face-to-face, one-time interview, participants were asked to share their perceptions about reciprocal friendship. Participants included 10 individuals who were primarily White, averaged 76 years old, with at least some college education. The data were analyzed using a phenomenological approach that revealed five themes of reciprocal friendship: recognizing the importance of longevity in friendship, helping one another is a normal part of friendship, feeling “alive” through the give and take in friendship, knowing somebody is there for them, and seeking security through friendship.

Stable Self-Concepts and Flexible Coping Strategies of People with Dementia Attending Dementia Self-Help Groups in Germany

2015 ◽  
pp. 159-182
Author(s):  
Milena von Kutzleben ◽  
Birgit Panke-Kochinke
Keyword(s):  
Coping Strategies ◽  
Phenomenological Approach ◽  
Community Dwelling ◽  
Life Course Perspective ◽  
External Control ◽  
Self Help ◽  
People With Dementia ◽  
Determining Factors ◽  
Self Help Groups ◽  
And Coping

In this chapter, results from the qualitative longitudinal Selbstbestimmung und Intervention (SEIN) study conducted at the DZNE site in Witten are presented and discussed against the background of a previously conducted systematic review of the subjective needs, demands, and coping strategies of community-dwelling people with dementia. The objective of the study was to examine how participants of dementia self-help groups in the early and middle stages of the condition cope with their illness. A phenomenological approach with a life-course perspective served as the framework for the study. The findings suggest that a person's self-concept is not changed by dementia but instead adapts over the trajectory of the illness. Struggling between external control (defence against stigmatization) and external protection (being taken seriously), and aiming for “Inner Security” were central concerns for the participants. Biographical background and social network are determining factors in the development and use of coping strategies.

scholarly journals Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare

2019 ◽  
Vol 32 (5) ◽  
pp. 355 ◽  
Author(s):  
Manuel Gonçalves-Pereira ◽  
Maria J. Marques ◽  
Conceição Balsinha ◽  
Alexandra Fernandes ◽  
Ana Sá Machado ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Unmet Needs ◽  
Community Support ◽  
Community Dwelling ◽  
Formal Care ◽  
Needs For Care ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Formal Services ◽  
Timely Access

Introduction: People with dementia and their relatives should have timely access to formal care in the community. The EU-Actifcare project analysed access to and use of formal services, as related to unmet needs for care. We describe the cohort study implementation and baseline results in Portugal, with a focus on needs for care and service use assessments.Material and Methods: Our convenience sample consisted of 66 dyads of community-dwelling people with mild to moderate dementia and no significant use of formal services, and their informal carers. Measures included the Camberwell Assessment of Need for the Elderly and Resources Utilization in Dementia.Results: People with dementia had unmet needs (mean 1.1; SD 1.7), mainly regarding company (23%), psychological distress (20%), and daily activities (14%). Family caregivers spent 150 minutes/day (median) providing support, and 44% had psychological distress unmet needs. Problems with access to or use of formal services, when present, were frequently due to attitudes or lack of knowledge of any or both members of the dyad.Discussion: The recruitment process was challenging, since the inclusion criteria were restrictive. Not claiming generalizability, we recruited a typical sample of Portuguese people with mild to moderate dementia and no significant formal community support. Levels and type of unmet needs found in some participants would call for formal support, were it not for problems regarding access or use.Conclusion: There are difficulties regarding timely access and effective use of formal care in dementia, along with relevant unmet needs.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Louise Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

BackgroundNegative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.ObjectiveWe aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.MethodsDuring the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.ResultsSignificant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.ConclusionEfforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals A Qualitative Exploration of the Needs of Community-Dwelling Patients Living with Moderate Dementia

2021 ◽  
Vol 18 (17) ◽  
pp. 8901
Author(s):  
Tzu-Pei Yeh ◽  
Hsing-Chia Chen ◽  
Wei-Fen Ma
Keyword(s):  
Home Care ◽  
Service Providers ◽  
Care Service ◽  
Home Care Services ◽  
Community Dwelling ◽  
End Of Life Decisions ◽  
Face To Face ◽  
Care Services ◽  
Moderate Dementia ◽  
Qualitative Exploration

Few studies have focused on developing a better understanding of the needs of patients with moderate-stage dementia. This study aimed to explore the needs of people living with moderate dementia and receiving home-care services from a local mental hospital. The study adopted a descriptive qualitative approach with purposive sampling to recruit patients with moderate dementia and receiving home-care services. Data were collected by face-to-face interviews and content analysis was used to interpret the experiences in the dialogue data. The results showed that the needs of people living with moderate dementia receiving home-care services contained four themes: the demand for company and care, the wish to recall familiar images, the need of reaffirming life purpose and value through reflection and reminiscence, and the desire for making autonomous end-of-life decisions. In addition to daily care, people living with moderate dementia crave companionship, expect meaningful exchanges of experiences to share their life, and have demands to have a voice in going through the final stage of life. The participants tended to focus more on issues related to the connections between living and dying. The results provide caregivers and home-care service providers with some insights into offering better care for people living with moderate dementia.

scholarly journals Engaging people with dementia in designing playful and creative practices: Co-design or co-creation?

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 915-931 ◽  
Author(s):  
Emmanuel Tsekleves ◽  
Amanda F Bingley ◽  
Maria A Luján Escalante ◽  
Adrian Gradinar
Keyword(s):  
Social Interaction ◽  
Qualitative Study ◽  
Social Interactions ◽  
Design Process ◽  
Design Research ◽  
Design Space ◽  
Considerable Contribution ◽  
People With Dementia ◽  
Participatory Arts ◽  
Practical Recommendations

Stimulating active, social interactions for people with dementia is an important and timely challenge that merits continuing attention in design research. The idea of using participatory co-design to engage people with dementia is attracting increased interest. In this paper, we draw on our qualitative study that used a playful, participatory arts approach to explore the ways co-design could be implemented in a group of 12 people with dementia and their carers, and developed practical recommendations, in the form of a set of playing cards, for other researchers and caregivers to work in similar ways. The emphasis is on the value of play and playfulness, providing a ‘magic circle’ (Huizinga, 1955) that fosters the required conditions for a co-creative, co-design space. This aims to encourage social interaction between people with dementia, to stimulate imagination and creativity; and engage even the most the reticent, less confident members. Our observations, however, suggest that the exact notion and nature of co-design within the context of working with people with dementia is unclear. We critically explore whether such participatory creative practices that engage people with dementia can be considered as purely co-design. In conclusion, we argue that such interaction is better described as co-creation and that this definition can still embrace considerable contribution and involvement by people with dementia in a co-design process.

scholarly journals The effect of long-term, group-based physical, cognitive and social activities on physical performance in elderly, community-dwelling people with mild to moderate dementia

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1829-1843
Author(s):  
Tina Junge ◽  
Hans Kromann Knudsen ◽  
Hanne Kaae Kristensen
Keyword(s):  
Activities Of Daily Living ◽  
Physical Performance ◽  
Daily Living ◽  
Community Dwelling ◽  
Repeated Measure ◽  
Social Activities ◽  
Walk Test ◽  
People With Dementia ◽  
Moderate Dementia

Background Elderly people with dementia are known to be less physically active compared with elderly, healthy people, emphasizing the need for interventions in order to maintain a high level of independence in activities of daily living. The aim was to evaluate the effect of long-term, group-based rehabilitation including physical activity on physical performance in elderly, community-dwelling people with mild to moderate dementia. Methods A quasi-experimental study of 18 elderly, community-dwelling people, diagnosed with mild to moderate dementia, participated in an ongoing rehabilitation programme based on integrated physical, cognitive and social activities. The outcome measure was physical performance: the 30-second sit-to-stand test, Guralnik balance test, 10-metre walking speed test, timed 6-metre walk test and a timed dual task walk test. The repeated measure ANOVA was used to analyse any overall differences between related means. Results No significant effect of time was found for the five outcome measures during the entire period. The variation in the estimate of most outcome scores was higher within subjects than between subjects during the period. Profile plots illustrated that three of the participants, who experienced severe cognitive deterioration, markedly declined in all physical performance tests. Conclusion The expected, progressive deterioration in physical performance was delayed in a small group of home-dwelling people with mild to moderate dementia participating in long-term, group-based rehabilitation. Long-term, group-based rehabilitation may have the overall potential to delay deterioration in activities of daily living performance in home-dwelling people with mild to moderate dementia; however, more studies with larger samples are needed to confirm the findings of this study.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Impact of COVID-19 on ‘Living Well’ with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

2021 ◽  
pp. 1-16
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Psychological experience of patients with confirmed COVID-19 at the initial stage of pandemic in Wuhan, China: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Tiantian Li ◽  
Yingjie Hu ◽  
Lei Xia ◽  
Lihua Wen ◽  
Wei Ren ◽  
...  
Keyword(s):  
Mental Health ◽  
Qualitative Study ◽  
Phenomenological Approach ◽  
Psychological Experience ◽  
Face To Face ◽  
Making Sense ◽  
Global Pandemic ◽  
Initial Stage ◽  
Unique Experience ◽  
Depth Interviews

Abstract Background Coronavirus disease 2019 (COVID-19) quickly developed into a global pandemic and affected patients’ mental health. However, little is known about psychological experience of patients with COVID-19. The aim was to elucidate the psychological experience of patients with confirmed COVID-19 in Wuhan, at the initial stage of the pandemic. Methods This study was conducted using a phenomenological approach in a qualitative study. Thirteen patients with confirmed COVID-19 from a COVID-19-designated hospital in Wuhan, were recruited between March 15th and April 20th, 2020 via purposive sampling. Semi-structured in-depth interviews were conducted face-to-face. The interview data were analyzed using inductive thematic analysis. Results The psychological experience of patients was summarized into three themes: mental distress related to COVID-19, expectations of life scenarios after discharge, and making sense of the experience. These themes were classified into 10 sub-themes. Patients experienced confusion, uncertainty, worry, guilt and concern. Both positive and negative expectations of life scenarios after discharge were reported, manifested as expectations about making up for lost time with family, anxiety about social discrimination and feelings of helplessness about poor financial security. Moreover, patients perceived strength of abundant social support and awareness of social responsibility from their unique experience to cope with their condition. Conclusions This study demonstrated that patients with confirmed COVID-19 in Wuhan underwent complex psychological experience, both positive and negative at the initial stage of the pandemic. These findings will contribute to the delivery of effective mental health care to safeguard patients’ wellbeing.

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