Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 informal carers, transcribed and analyzed with manifest content analysis. Needs and expectations of support among persons with dementia were expressed as the importance of “Participation in my own care,” “Attitude of the informal carers,” and “Trusting relationships with informal carers.” Informal carers’ needs and expectations of support were expressed as the importance of “Formal care and services,” “Getting out of a carer mindset,” and “Family context.” The findings from this study highlighted that persons with dementia were well aware of their cognitive impairments and tried to maintain their independence, with both formal and informal care to help remain “being themselves.” Health professionals should acknowledge persons with dementia and informal carers’ well-being, and acknowledge the importance of their needs together with an understanding of the importance of continuity of frontline carers to building trusting relationships.

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Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help

International Psychogeriatrics ◽

10.1017/s1041610214002804 ◽

2015 ◽

Vol 27 (6) ◽

pp. 927-936 ◽

Cited By ~ 62

Author(s):

Lizzy M. M. Boots ◽

Claire A. G. Wolfs ◽

Frans R. J. Verhey ◽

Gertrudis I. J. M. Kempen ◽

Marjolein E. de Vugt

Keyword(s):

Early Stage ◽

Well Being ◽

Therapeutic Interventions ◽

Care Recipient ◽

Positive Interaction ◽

Dementia Caregivers ◽

Personal Time ◽

People With Dementia ◽

Retrospective View ◽

Group Interviews

ABSTRACTBackground:Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.Methods:Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.Results:Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.Conclusions:Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.

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The impact of COVID-19 on the lives of community- dwelling people with dementia and informal carers in the context of using the social and medical services – a qualitative study

10.21203/rs.3.rs-415217/v1 ◽

2021 ◽

Author(s):

Maria Maćkowiak ◽

Adrianna Senczyszyn ◽

Katarzyna Lion ◽

Elżbieta Trypka ◽

Monika Małecka ◽

...

Keyword(s):

Social Support ◽

Well Being ◽

Community Dwelling ◽

Medical Services ◽

Structured Interviews ◽

Team Members ◽

Qualitative Thematic Analysis ◽

People With Dementia ◽

Informal Carers ◽

The Impact

Abstract Background: Older people with dementia are particularly at risk of COVID-19, whilst still little is known about the indirect impact of the Pandemic on the lives of those living with and caring for someone with dementia. The aim of this study was to investigate the impact of the Pandemic on the lives of people with dementia and their informal carers in the context of using social and medical services in Poland. Methods: A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed. Interviews were collected between June and August 2020 via phone after the first wave of COVID-19 in Poland. Data were analysed using NVivo software by four team members. Results: Three overarching themes emerged: (1) Care re-organization; (2) Psychological responses; (3) Emerging needs. The factor underlying all these elements were a reliance on other people. Regardless of the type of support (informal or formal), a sense of presence of others and maintaining mutual contacts displayed as crucial elements influencing the well-being of people with dementia and informal carers. Conclusions: Social support and engagement are vital to the ongoing health and wellbeing of people living with dementia and their informal carers. Services need sustaining to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their need.

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343 - Best Practice Guidance on Human Interaction with Technology in Dementia – Recommendations from the INDUCT Network

International Psychogeriatrics ◽

10.1017/s1041610220002434 ◽

2020 ◽

Vol 32 (S1) ◽

pp. 103-103

Author(s):

Rose-Marie Dröes ◽

Yvette Vermeer ◽

Sébastien Libert ◽

Sophie Gaber ◽

Sarah Wallcook ◽

...

Keyword(s):

Best Practice ◽

Early Stage ◽

Human Interaction ◽

Target Groups ◽

Web Based ◽

Policy Makers ◽

International Training ◽

People With Dementia ◽

Informal Carers ◽

Care Technology

The Interdisciplinary Network for Dementia Using Current Technology, INDUCT, is a Marie Sklodowska Curie funded International Training Network that aims to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia. Within INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support every day life; technology to promote meaningful activities; and health care technology.Three transversal objectives were adopted by INDUCT: 1) To determine the practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; and 3) To trace facilitators and barriers for implementation of technology in dementia care.The main recommendations resulting from the research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which will be presented at the congress. The recommendations are meant to be helpful for different target groups, i.e. people with dementia, their formal and informal carers, policy makers, designers and researchers, who can easily select the for them relevant recommendations in the Best Practice Guidance by means of a selection tool. The main aim of the Best Practice Guidance is to improve the development, usage and implementation of technology for people with dementia in the three mentioned technology areas.This Best Practice Guidance is the result of the intensive collaborative partnership of INDUCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the INDUCT project.Acknowledgements: The research presented was carried out within the Marie Sklodowska Curie International Training Network (ITN) action, H2020-MSCA-ITN-2015, grant agreement number 676265.

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Assistive Technologies and the Carers of People with Dementia

International Journal of Reliable and Quality E-Healthcare ◽

10.4018/ijrqeh.2016010104 ◽

2016 ◽

Vol 5 (1) ◽

pp. 45-59

Author(s):

Sarmishtha Bhattacharyya ◽

Susan Mary Benbow

Keyword(s):

Quality Of Life ◽

Well Being ◽

Assistive Technologies ◽

Narrative Review ◽

People With Dementia ◽

Technological Interventions ◽

Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia, and in maintaining the independence, and quality of life of both people with dementia and their carers. The authors report a narrative review of the use of technological interventions to empower the carers of people with dementia, and relate this to a model of ageing well. They argue that this highlights the importance of empowering and connecting with carers in order to increase their participation and connection in the care of their relative/client; and conclude that both empowerment and connection contribute to maintaining autonomy and well-being of both carers and people with dementia. Technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

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Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia

Psychological Medicine ◽

10.1017/s0033291718000405 ◽

2018 ◽

Vol 48 (13) ◽

pp. 2130-2139 ◽

Cited By ~ 61

Author(s):

Anthony Martyr ◽

Sharon M. Nelis ◽

Catherine Quinn ◽

Yu-Tzu Wu ◽

Ruth A. Lamont ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Life Satisfaction ◽

Social Engagement ◽

Meta Analysis ◽

Well Being ◽

Factors Associated ◽

Living Well ◽

People With Dementia

AbstractCurrent policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

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RAISING OUR VOICES: THE BENEFITS OF AN INTERGENERATIONAL CHOIR FOR PEOPLE WITH DEMENTIA AND THEIR CARE PARTNERS

Innovation in Aging ◽

10.1093/geroni/igz038.2758 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S751-S752

Author(s):

Debra J Sheets ◽

Theresa A Allison

Keyword(s):

Quality Of Life ◽

Older Adults ◽

High School Students ◽

Well Being ◽

Community Dwelling ◽

The Body ◽

Social Intervention ◽

Social Connections ◽

People With Dementia

Abstract This interdisciplinary symposium focuses on the Voices in Motion (ViM) choir, a novel social intervention to address issues of stigma and social isolation among older adults with dementia and their caregivers. ViM is an intergenerational choir for community-dwelling older adults with dementia (PwD) and their caregivers. Local high school students participated in the choir and added to the lively social interactions. Two professionally directed ViM choirs were fully implemented in 2018-2019 with a public performance in the Fall and Spring seasons. This symposium brings together multiple methodologies to investigate the effects of choir participation on cognition, social connections, stigma, and quality of life for the dyads. Results in the individual papers demonstrate the positive impact of choir participation on dyads (n=26) for measures that includecognition (MacDonald), well-being and quality of life (Sheets), and social connections (Smith). Taken as a whole, the papers indicate that this social intervention offers an effective non- pharmacological alternative approach for older adults with dementia. Choir participation has important and significant impacts on psycho-social well-being and quality of life. The body of evidence presented points to the importance of intergenerational programs that are dementia-friendly and that support meaningful participation by older adults with dementia in the broader community. Discussion focuses on implications for social policy with attention on the replication and sustainability of the program.

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Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project

International Psychogeriatrics ◽

10.1017/s1041610214000088 ◽

2014 ◽

Vol 26 (5) ◽

pp. 769-779 ◽

Cited By ~ 60

Author(s):

F. J. M. Meiland ◽

B. J. J. Hattink ◽

T. Overmars-Marx ◽

M. E. de Boer ◽

A. Jedlitschka ◽

...

Keyword(s):

Participatory Design ◽

Ethical Issues ◽

End Users ◽

Community Dwelling ◽

Modular System ◽

Individual Interviews ◽

Emergency Situations ◽

People With Dementia ◽

Expert Meeting ◽

Informal Carers

ABSTRACTBackground:In the European Rosetta project three separate, previously developed, ICT systems were improved and integrated to create one modular system that helps community-dwelling people with mild cognitive impairment and dementia in different stages of the disease. The system aims to support them in daily functioning, monitor (deviations from) patterns in daily behaviour and to automatically detect emergency situations. The study aimed to inventory the end users’ needs and wishes regarding the development and design of the new integrated Rosetta system, and to describe the to be developed Rosetta system.Methods:Qualitative user-participatory design with in total 50 persons: 14 people with dementia, 13 informal carers, 6 professional carers, 9 dementia experts, 7 care partners within the project, and 1 volunteer. In the Netherlands user focus group sessions were performed and in Germany individual interviews. Dementia experts were consulted by means of a questionnaire, an expert meeting session, and interviews.Results:Persons with dementia and informal carers appreciated the following functionalities most: help in cases of emergencies, navigation support and the calendar function. Dementia experts rated various behaviours relevant to monitor in order to detect timely changes in functioning, e.g. eating, drinking, going to the toilet, taking medicine adequately, performance of activities and sleep patterns. No ethical issues regarding the use of sensors and cameras were mentioned.Conclusion:The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.

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

10.31219/osf.io/zkwyr ◽

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.

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Development of an integrative learning program for community dwelling old people with dementia

Revista Latino-Americana de Enfermagem ◽

10.1590/1518-8345.4794.3486 ◽

2021 ◽

Vol 29 ◽

Author(s):

Thomas Kwok Shing Wong ◽

Yang Yunhua ◽

Chen Jinghan ◽

Carmen Ka Man Lee ◽

Zhou Ying ◽

...

Keyword(s):

Program Implementation ◽

Well Being ◽

Community Dwelling ◽

Integrative Learning ◽

Learning Program ◽

Learning Framework ◽

People With Dementia ◽

Feasibility Test ◽

Training Of Personnel ◽

Robust Evidence

Objective: to develop an integrative learning program for people with dementia. Method: a methodological study was conducted using Delphi technique to develop the learning program, followed by a feasibility test. An expert panel was invited to develop the integrative learning program based on the neuroplasticity and learning framework. A feasibility test was conducted to evaluate the implementation of the program in two centers after the training of personnel who run the program. Verbatim transcripts of case conferences were coded, analyzed, and collapsed into themes and sub-themes by consensus. Results: there was no indication for content modification during the period of program implementation. Qualitatively, the participating older adults showed improvement in communications, emotions, connectedness with self and others, and well-being. Conclusion: the integrative learning program was uneventfully implemented with promising results. The program is ready for full-scale research on its efficacy in multiple centers to obtain more robust evidence.

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Emphasise Capability, Not Disability: Exploring public perceptions, facilitators and barriers to living well with dementia in Northern Ireland.

10.21203/rs.3.rs-27448/v3 ◽

2020 ◽

Author(s):

Gary Mitchell ◽

Victoria McTurk ◽

Gillian Carter ◽

Christine Brown-Wilson

Keyword(s):

Thematic Analysis ◽

Public Perceptions ◽

Death Sentence ◽

Northern Irish ◽

Living Well ◽

People With Dementia ◽

Ethical Approval ◽

Facilitators And Barriers ◽

Group Interviews ◽

Modes Of Life

Abstract Background: Improving public knowledge and understanding about dementia has been identified as a priority area by people living with the condition, researchers, educators, and policymakers for several years. Societies that have a better understanding of the condition are more likely to enable people living with dementia to enjoy a better quality of life. The aim of this study was to explore current public perceptions of dementia along with the facilitators and barriers to living well from the perspective of people living with the condition in Northern Ireland.Methods: Four focus group interviews were conducted with a total of 20 people living with dementia across three Northern Irish Counties in June 2019. These interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Ethical approval was obtained for this study prior to data collection.Findings: Following thematic analysis, three themes emerged in relation to barriers and facilitators to living well with dementia. These were: ‘Emphasis on Disability NOT Capability’, which highlighted societal misconceptions about the activities and modes of life which people with dementia could or could not do; ‘Normalise Dementia – We Don’t Want a Fool’s Pardon’, which focused on how the public could encourage people living with the condition to enjoy greater independence, and ‘Dementia isn’t a Death Sentence’, which considered how professionals, family members and friends treated the person after diagnosis.Conclusions: Public perceptions about dementia have the potential to act as both facilitators and barriers to living well with dementia. People with dementia stated that they are more likely sustain wellbeing when they are valued and can maintain independence. On the contrary, poor public and professional attitudes to dementia had the potential to disempower people living with dementia.

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