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The Lived Experience of People Living with Dementia and Caregivers
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The Lived Experience of People Living with Dementia and Caregivers

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601).

Deadline for manuscript submissions: closed (1 October 2023) | Viewed by 23820

Special Issue Editor

Dr. Angela Clifford

E-Mail Website
Guest Editor
Caring For Lifelong Health Research Centre, Faculty of Education, Health and Wellbeing, University of Wolverhampton, Wolverhampton WV1 1DT, UK
Interests: dementia; aging well; service user experience; health inequalities; service evaluation; public health; research ethics

Special Issue Information

Dear Colleagues,

We are organising a Special Issue on “The Lived Experiences of People Living with Dementia and Their Caregivers” in the International Journal of Environmental Research and Public Health. This is a peer-reviewed scientific journal that publishes articles and communications in the interdisciplinary area of environmental health sciences and public health. For detailed information on the journal, please see https://www.mdpi.com/journal/ijerph. 

Dementia continues to present a major public health challenge worldwide. The condition can lead to difficult health trajectories, and people living with dementia as well as their families often experience economic strain, social exclusion and reduced quality of life. Research into the diverse experiences of dementia is vital to informing compassionate and effective community responses that address the needs of those affected and better enable them to continue living active and meaningful lives.

For this Special Issue, we are seeking research that illuminates the experiences and perspectives of people who are living with dementia and of their informal or family caregivers. We are particularly interested in the use of novel techniques to explore lived experiences, such as the arts; examples of how research has translated into policy or best practice; and research considering diversity within communities. However, this Special Issue is open to any subject area related to the title and keywords, and we invite your contributions

Dr. Angela Clifford
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • dementia
  • lived experience
  • diverse communities
  • aging in place
  • quality of life
  • informal caregiving
  • caregiver wellbeing
  • social exclusion
  • service user experience

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Published Papers (6 papers)

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Research

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12 pages, 340 KiB  
Article
Living Well with Dementia: Feeling Empowered through Interaction with Their Social Environment
by Berit Ziebuhr, Michele Zanasi, Yolanda Bueno Aguado, Raquel Losada Durán, Tom Dening, Isabelle Tournier, Kristina Niedderer, Ana Diaz, Diana Druschke, Rosa Almeida and Vjera Holthoff-Detto
Int. J. Environ. Res. Public Health 2023, 20(12), 6080; https://doi.org/10.3390/ijerph20126080 - 8 Jun 2023
Cited by 1 | Viewed by 2950
Abstract
This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part [...] Read more.
This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. A qualitative thematic content analysis was performed to elicit the key features of the experience reported by the interviewees. Three overarching categories were identified: the first category ‘experiencing changes in personal life and coping with changes in life’ covered losses and coping strategies; the second category ‘retaining a sense of usefulness‘ included social participation and the need for activities with others; the third category ‘feeling empowered’ covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants placed a strong emphasis on continuity and on the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
25 pages, 394 KiB  
Article
An Investigation of the Wishes, Needs, Opportunities and Challenges of Accessing Meaningful Activities for People Living with Mild to Moderate Dementia
by Isabelle Tournier, Laura Orton, Tom Dening, Anya Ahmed, Vjera Holthoff-Detto and Kristina Niedderer
Int. J. Environ. Res. Public Health 2023, 20(7), 5358; https://doi.org/10.3390/ijerph20075358 - 31 Mar 2023
Cited by 4 | Viewed by 2666
Abstract
Many people are keen to be actively involved in social life and activities, but even at an early stage, dementia can have a negative impact on social participation and access to leisure activities. As part of the IDoService project, this study has investigated [...] Read more.
Many people are keen to be actively involved in social life and activities, but even at an early stage, dementia can have a negative impact on social participation and access to leisure activities. As part of the IDoService project, this study has investigated people’s needs and wishes, barriers and facilitators to identify opportunities for improving access to meaningful activities. Individual and focus group interviews were conducted with 5 people living with mild to moderate dementia, 2 familial and 2 professional care partners, as well as 12 people working in the field of dementia and/or community activities. Thematic analysis has highlighted the benefits of participating in meaningful activities, such as empowerment and pride, social contacts, and feeling useful to others. A number of barriers to participation relating to individual and environmental factors were reported. Even where participants praised dementia-friendly activities and facilities, they advocated activities inclusive for all and mentioned that some people might be reluctant to participate in dementia-labelled activities because they may not be suitable for their needs. These results indicate the need for developing tailored opportunities for people with mild to moderate dementia and provide valuable insights for researchers, service providers, policymakers and charities wanting to improve access. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
8 pages, 298 KiB  
Article
‘24/7’ Caregiving: A Qualitative Analysis of an Emerging Phenomenon of Interest in Caregiving
by Esther Yin Hui Chew, Zhi Lei Ong, George Frederick Glass, Jr. and Ee-Yuee Chan
Int. J. Environ. Res. Public Health 2022, 19(24), 17046; https://doi.org/10.3390/ijerph192417046 - 19 Dec 2022
Cited by 2 | Viewed by 2116
Abstract
The COVID-19 pandemic has exacerbated the difficulties faced by caregivers who have to provide continuous ‘24/7’ care to persons with dementia with minimal formal and informal support. While caregivers have reported heightened levels of caregiving distress and burden during the pandemic, there remains [...] Read more.
The COVID-19 pandemic has exacerbated the difficulties faced by caregivers who have to provide continuous ‘24/7’ care to persons with dementia with minimal formal and informal support. While caregivers have reported heightened levels of caregiving distress and burden during the pandemic, there remains a dearth of research pertaining to their lived experiences of providing continuous care with little respite and the corresponding physical, psychosocial and emotional impacts of caregiving ‘24/7’. The present study uses data obtained from interviews with dementia caregivers (N = seven) that were collected as part of a larger study on Carer Matters, a hospital-based holistic caregiver support program held during COVID-19, to conduct a secondary thematic analysis. The findings revealed three themes that defined the shared experiences of ‘24/7’ caregivers: (1) A World Overturned, which refers to the increase in caregiving intensity and burden due to the pandemic; (2) Burning on Both Ends, which refers to the impossible balance between caregiving and their personal lives; and (3) At Wits’ End, which refers to an overwhelming sense of hopelessness and helplessness over their caregiving situation. These findings highlight the challenges and unsustainability of ‘24/7’ caregiving and the detrimental impact that round-the-clock care wields on caregivers’ physical and mental well-being. Implications and recommendations are discussed in accordance with the cultural particularities of the study’s Asian context (Singapore), with calls for greater caregiver support to be better integrated into society and the community, especially at the neighborhood and grassroots level, to alleviate caregiving burden and safeguard their well-being. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
12 pages, 1362 KiB  
Article
Projecting Informal Care Demand among Older Koreans between 2020 and 2067
by Bo Hu, Peter Shin, Eun-jeong Han and YongJoo Rhee
Int. J. Environ. Res. Public Health 2022, 19(11), 6391; https://doi.org/10.3390/ijerph19116391 - 24 May 2022
Cited by 5 | Viewed by 2245
Abstract
Background: The number of Korean older people receiving informal care is expected to rise sharply due to aging population. This study makes projections of demand for informal care in community-dwelling older people aged 65 and over in Korea until 2067. Method: The study [...] Read more.
Background: The number of Korean older people receiving informal care is expected to rise sharply due to aging population. This study makes projections of demand for informal care in community-dwelling older people aged 65 and over in Korea until 2067. Method: The study drew on data collected from waves 4–6 of the Korean Longitudinal Study of Aging (2012–2016, n = 12,975). Population data published by Statistics Korea and data from the Long-term Care Insurance Statistical Yearbook for Korea were also used. A macro-simulation model was built to make the projections. Results: The number of older people receiving informal care will increase from 0.71 million in 2020 to 2.2 million in 2067. Demand for informal care from adult children or relatives is projected to rise by 257%, much faster than the increase in demand for spousal care (164%). The estimates are sensitive to alternative assumptions about future mortality rates, fertility rates, patterns of migration, and the prevalence of functional disabilities in the population. Conclusion: Demand for informal care in Korea will rise substantially in the coming decades, and the increase will be uneven for different groups of care users. Our analyses are not only relevant to the long-term care system for the general older population but also have profound implications for intensive users of long-term care in Korea. The findings highlight the importance of accurate identification of unmet needs in the population and timely delivery of government support to older people and their informal caregivers. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
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14 pages, 2281 KiB  
Article
Interface Design for Products for Users with Advanced Age and Cognitive Impairment
by Li-Hao Chen and Yi-Chien Liu
Int. J. Environ. Res. Public Health 2022, 19(4), 2466; https://doi.org/10.3390/ijerph19042466 - 21 Feb 2022
Viewed by 2148
Abstract
The aim of this study is to investigate the problems and needs of users with advanced age and cognitive impairment regarding the design and operation of daily living products. Television remote controls and an electric rice cooker were applied as the research tools, [...] Read more.
The aim of this study is to investigate the problems and needs of users with advanced age and cognitive impairment regarding the design and operation of daily living products. Television remote controls and an electric rice cooker were applied as the research tools, and focus group interviews with control older adults and interviews with individuals with MCI or mild dementia were conducted regarding the operation of the products. The control participants stressed that the operating procedures should not be excessively complex, the number of functions and buttons should not be overly high, and buttons and text should be enlarged. For those with MCI or mild dementia, in addition to the size and number of buttons, text size, and functions, their operation of product interfaces was affected by the complexity of the operating procedures. The solutions recommended by the participants included interface design involving direct operation and voice control. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
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Review

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25 pages, 863 KiB  
Review
Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review
by Jacoba Huizenga, Aukelien Scheffelaar, Agnetha Fruijtier, Jean Pierre Wilken, Nienke Bleijenberg and Tine Van Regenmortel
Int. J. Environ. Res. Public Health 2022, 19(17), 10828; https://doi.org/10.3390/ijerph191710828 - 30 Aug 2022
Cited by 10 | Viewed by 10289
Abstract
Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life [...] Read more.
Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging. Full article
(This article belongs to the Special Issue The Lived Experience of People Living with Dementia and Caregivers)
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