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13 pages, 258 KiB

Open AccessEditor’s ChoiceArticle

Views about Euthanasia and Dementia: Exploring Perceptions Utilising Evidence from the Mass Observation Archive

by Janet Blain, Dean Stevens, Louise Taylor, Paul Kingston and Geoffrey Watts

Healthcare 2023, 11(18), 2552; https://doi.org/10.3390/healthcare11182552 - 15 Sep 2023

Viewed by 1157

Abstract

This paper contributes to the ongoing discussion in the United Kingdom regarding euthanasia and assisted dying, using data specifically related to individuals with dementia. A qualitative approach was taken with data captured via a set of written questions in the form of a [...] Read more.

This paper contributes to the ongoing discussion in the United Kingdom regarding euthanasia and assisted dying, using data specifically related to individuals with dementia. A qualitative approach was taken with data captured via a set of written questions in the form of a Mass Observation Archive Directive. The respondents, known as Observers, provided written responses; there was no limit to the length of the responses and the Observers were able to provide as much or as little detail as they chose. The data were analysed thematically utilising NVivo software. One-hundred and seven responses were received, representing a range of beliefs, and with opinions regarding euthanasia and dementia with pro, anti, and uncertain views being expressed. Five main themes emerged during our data analysis: capacity, legislation, agency and personal philosophies, disquietude, and incumbrance. Consistent with previous research capturing public views regarding euthanasia and assisted dying for people with dementia, the findings suggest policy makers may wish to consult the British public regarding legislation regarding euthanasia and dementia. Full article

(This article belongs to the Special Issue Dementia and Care)

14 pages, 275 KiB

Open AccessEditor’s ChoiceArticle

Navigating the Impacts of Dementia: The Experience of Male Spousal Carers

by Edward Tolhurst and Bernhard Weicht

Healthcare 2023, 11(18), 2492; https://doi.org/10.3390/healthcare11182492 - 08 Sep 2023

Viewed by 867

Abstract

This article investigates the experience of male spousal carers for women living with dementia. While cultural discourses on care are highly gendered, social scientific research often addresses care relationships in gender-neutral terms. Setting out to address this matter, this qualitative research study incorporated [...] Read more.

This article investigates the experience of male spousal carers for women living with dementia. While cultural discourses on care are highly gendered, social scientific research often addresses care relationships in gender-neutral terms. Setting out to address this matter, this qualitative research study incorporated semi-structured joint interviews with 10 couples in which a male spouse cared for a woman with dementia. The aim was to explore how couples negotiate relationships and care following a diagnosis of dementia. The focus of this paper is on the perspectives expressed in these joint interviews by the male carers. A thematic analysis was undertaken to establish the key content of the men’s accounts. Three principal themes were identified: making sense of the condition; treating dementia as a problem to be solved; and engaging with professionals and support. The gendered basis of experience for male carers is explored within these themes, demonstrating how societal norms of masculinity intersect with caring roles. The paper concludes that a nuanced research approach to dementia care must continue to be developed, accounting for how gender shapes personal responses to the navigation of care relationships. Practitioners and policymakers must also consider how gendered experience shapes the identities and strategies of male carers. Full article

(This article belongs to the Special Issue Dementia and Care)

13 pages, 281 KiB

Open AccessEditor’s ChoiceArticle

The Spousal Unit and Dementia: Investigating the Relational Basis of the Couplehood Concept

by Bernhard Weicht and Edward Tolhurst

Healthcare 2023, 11(15), 2191; https://doi.org/10.3390/healthcare11152191 - 03 Aug 2023

Cited by 1 | Viewed by 745

Abstract

A strong emphasis is consistently placed upon the relational basis of experience within social scientific dementia research. Within this research corpus, the concept of couplehood is increasingly employed, albeit in rather undefined and loosely theorised ways. Moreover, the evaluation highlights that couplehood is [...] Read more.

A strong emphasis is consistently placed upon the relational basis of experience within social scientific dementia research. Within this research corpus, the concept of couplehood is increasingly employed, albeit in rather undefined and loosely theorised ways. Moreover, the evaluation highlights that couplehood is often defined by a normative position that seeks to convey an affirmative perspective on dementia and spousal relationships. The lack of theoretical foundation, however, weakens the explanatory potential of the concept, both for theorising dementia, as well as for empirical research. This article critically evaluates the utility of the couplehood concept by delineating three underlying theoretical conceptions: phenomenological, interactional and relational perspectives. It will be argued that those theoretical threads offer different analytical angles and research opportunities. More thorough ontological development, however, can guide understandings of the complexities that underpin the relational experience of dementia. This will promote a conceptual starting point that offers a more balanced and multifaceted accommodation of two persons and their relationship. Full article

(This article belongs to the Special Issue Dementia and Care)

20 pages, 9824 KiB

Open AccessArticle

“I See What You Mean”—A Case Study of the Interactional Foundation of Building a Working Alliance in Care Decisions Involving an Older Couple Living with Cognitive Decline

by Elin Nilsson and Anna Olaison

Healthcare 2023, 11(15), 2124; https://doi.org/10.3390/healthcare11152124 - 25 Jul 2023

Cited by 1 | Viewed by 712

Abstract

Background: Social workers have a key role in needs assessment meetings with families dealing with dementia, providing information, support, and advocacy, while also assessing needs and making decisions about care services for several parties. These contacts are especially important during the introduction of [...] Read more.

Background: Social workers have a key role in needs assessment meetings with families dealing with dementia, providing information, support, and advocacy, while also assessing needs and making decisions about care services for several parties. These contacts are especially important during the introduction of home care services, where often the person has previously relied on informal support from relatives. The needs assessment process entails the involvement of all present parties, with the aim to reach a mutual agreement, a working alliance, regarding which services to apply for. Purpose: The aim of this case study is to explore how the participants, by means of different conversational practices, jointly create a working alliance between the different parties in one family. The study provides insights into the process of co-constructing a working alliance in the needs assessment process for elder care services. Methods: This article addresses the process by which social workers build a working alliance in a multi-party conversation with a family living with cognitive decline; a meeting that lasted 50 min. In this case study, we benefit from an inductive and detailed conversation analytic methodology. The theoretical framework of working alliances in institutional interaction has informed the analysis. Results: The findings illustrate how the social worker in this case study involves all parties in the decision regarding care services and explores the use of the conversational practices of mitigations, positive framing, adding information, and positioning, as a “we” achieve mutual agreement toward the end of several sequences. Conclusions: Drawing on the results of this case study, we argue that multi-party interaction involving relatives enables diversity in role-taking, where the professional, for instance, can pursue a more empathic role. Also, our results indicate that minimal agreement to a proposal is sufficient in a multi-party interaction involving clients with cognitive decline. Full article

(This article belongs to the Special Issue Dementia and Care)

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13 pages, 264 KiB

Open AccessArticle

The Support Priorities of Older Carers of People Living with Dementia: A Nominal Group Technique Study

by Daniel Herron and Jessica Runacres

Healthcare 2023, 11(14), 1998; https://doi.org/10.3390/healthcare11141998 - 11 Jul 2023

Cited by 1 | Viewed by 909

Abstract

The aim of this study was to understand the support priorities of older (65+ years old) carers of people living with dementia. Two nominal group technique focus groups were carried out with older carers of people living with dementia. Twelve carers participated across [...] Read more.

The aim of this study was to understand the support priorities of older (65+ years old) carers of people living with dementia. Two nominal group technique focus groups were carried out with older carers of people living with dementia. Twelve carers participated across two focus groups. Participants individually identified support priorities, and through several steps, reached a consensus to produce a ranked list of support priorities. The results consisted of two lists (one list per group), which when combined made up 15 support priorities. These priorities are presented alongside their overall and mean ranking. The authors did not refine these priorities after the focus groups, however, as there was overlap between priorities across the two liststhe results benefited from being themed. These overarching themes consisted of prioritising the carers’ holistic needs; having a sense of belonging; support needs to be accessible and timely; support to meet the wellbeing and personhood of the person living with dementia; and understanding and training for the wider community. These results have highlighted support priorities, developed by older carers, that services and organisations can use to better inform the support and services that older carers receive. Full article

(This article belongs to the Special Issue Dementia and Care)

13 pages, 242 KiB

Open AccessArticle

Religious Influences on the Experience of Family Carers of People with Dementia in a British Pakistani Muslim Community

by Peter Kevern, Dawn Lawrence, Nargis Nazir and Anna Tsaroucha

Healthcare 2023, 11(1), 120; https://doi.org/10.3390/healthcare11010120 - 30 Dec 2022

Cited by 4 | Viewed by 1884

Abstract

This paper reports on a study that begins to address the paucity of research around the religious motivations of Muslim carers of family members with dementia. Seven carers were recruited for interviews from the British Pakistani Muslim community concentrated in the Midlands and [...] Read more.

This paper reports on a study that begins to address the paucity of research around the religious motivations of Muslim carers of family members with dementia. Seven carers were recruited for interviews from the British Pakistani Muslim community concentrated in the Midlands and North of England. Interview transcripts were analysed thematically using an iterative collaborative methodology. The findings suggested that the Muslim faith plays a pivotal role as a support mechanism for individual carers and their families, but the wider faith community and its leaders did not typically offer support and could impede access to external care. This was a result of cultural pressure and lack of awareness both among religious leaders and the community as a whole. The study concluded that the inequality in access to dementia services may be constructively addressed if service providers engage with these faith concerns in the community and religious leaders to meet the needs of Muslims of British Pakistani origin. Full article

(This article belongs to the Special Issue Dementia and Care)

14 pages, 274 KiB

Open AccessEditor’s ChoiceArticle

Through Thick and Thin: The Meaning of Dementia for the Intimacy of Ageing Couples

by Päivi Eskola, Outi Jolanki and Mari Aaltonen

Healthcare 2022, 10(12), 2559; https://doi.org/10.3390/healthcare10122559 - 17 Dec 2022

Cited by 6 | Viewed by 2089

Abstract

As the population ages, the number of people with dementia increases. An emerging body of research is focusing on living with dementia and understanding the experience of caring and the care burden. There is much less research on the meaning of dementia from [...] Read more.

As the population ages, the number of people with dementia increases. An emerging body of research is focusing on living with dementia and understanding the experience of caring and the care burden. There is much less research on the meaning of dementia from the perspective of an older couple’s spousal relationship and related intimacy. This qualitative study explores the meanings of emotional and physical intimacy and the changes brought by dementia in the couplehood of persons with dementia and their spousal carers. The data comprise semi-structured interviews with 35 persons. The interviews were analysed using inductive qualitative content analysis. Four themes describing the meanings of relational intimacy were identified: intimacy as a striving force, intimacy turning into worrisome behaviour, intimacy as physical and emotional dependency, and intimacy turning into one-sided caring for a partner. Dementia changes the intimate relationship in many ways, but shared affection and long-term partnership help maintain the spousal relationship. While dementia may bring about conflicts and behavioural challenges in an intimate relationship, the couple’s shared intimacy and a sense of responsibility for one another may serve as a resource and support the continuity of couplehood. Full article

(This article belongs to the Special Issue Dementia and Care)

Other

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11 pages, 264 KiB

Open AccessConcept Paper

Designing Inclusive Qualitative Research with Carers of People Living with Dementia: Methodological Insights

by Jessica Runacres and Daniel Herron

Healthcare 2023, 11(15), 2125; https://doi.org/10.3390/healthcare11152125 - 25 Jul 2023

Cited by 1 | Viewed by 956

Abstract

The support provided by carers of people living with dementia results in savings for the UK economy; however, providing this care has a significant impact on carers. Supports are needed to ensure that carers can continue to provide care, and carers should be [...] Read more.

The support provided by carers of people living with dementia results in savings for the UK economy; however, providing this care has a significant impact on carers. Supports are needed to ensure that carers can continue to provide care, and carers should be involved in the generation of the evidence necessary to develop such support. However, this relies on their ability to meaningfully engage with research, yet current data collection methods create obstacles to engagement. In this paper, we aim to provide a critical examination of approaches to qualitative data collection with carers and produce recommendations for the design of inclusive research. First, different approaches to qualitative data collection are discussed and appraised. Following this, a case study of inclusive research is presented, illustrating how carers can be facilitated to engage in research. Finally, recommendations for inclusive research are offered, including the collection of data without the cared-for person present, building additional care into a study design, providing ‘incidental funds,’ offering sustenance and remuneration, and undertaking research in a neutral space. These recommendations are designed to facilitate the involvement of carers in research and promote the use of more varied or multifaceted methods to develop the current evidence base. Full article

(This article belongs to the Special Issue Dementia and Care)

24 pages, 5718 KiB

Open AccessSystematic Review

Benefits of Cultural Activities on People with Cognitive Impairment: A Meta-Analysis

by Laia Delfa-Lobato, Maria Feliu-Torruella, Cristina Cañete-Massé, Silvia Ruiz-Torras and Joan Guàrdia-Olmos

Healthcare 2023, 11(13), 1854; https://doi.org/10.3390/healthcare11131854 - 26 Jun 2023

Viewed by 1191

Abstract

Background: Museums and cultural institutions are increasingly aware of both the interests and needs of society. Accordingly, these institutions are becoming allies in terms of health and well-being due to the importance of their social functions. Presently, many institutions create cultural activities aimed [...] Read more.

Background: Museums and cultural institutions are increasingly aware of both the interests and needs of society. Accordingly, these institutions are becoming allies in terms of health and well-being due to the importance of their social functions. Presently, many institutions create cultural activities aimed at cognitively impaired people, a group on the rise owing to the prevalence of dementia and the aging of society. Nevertheless, scientific evidence in this field remains scarce. As a result, the main objective of this research was to empirically evaluate and identify the benefits that cultural interventions can bring to cognitively impaired participants. Method: A meta-analysis (MA) was performed following PRISMA guidelines. When inclusion and eligibility criteria had been established, articles were subsequently selected through a strategic search of Web of Science, SCOPUS, PubMed, and Medline. Results: Twenty-six studies met the eligibility criteria, involving a total of 1201 participants with cognitive impairment. The results showed a statistically non-significant effect size when analyzing these cultural interventions for cognitively impaired people overall. However, when conducting partial meta-analyses (MA’), focusing on studies related to a specific disease, a particular type of treatment, or a specific type of evaluation, the results concurred with the conclusion of the previous systematic review (SR). Conclusion: Despite the high heterogeneity of the studies, benefits were identified in emotional well-being and social aspects but not in clinical ones such as the deterioration of cognitive or motor function, among others. Full article

(This article belongs to the Special Issue Dementia and Care)

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17 pages, 590 KiB

Open AccessEditor’s ChoiceSystematic Review

Spiritual Needs of Older Adults Living with Dementia: An Integrative Review

by Katherine Carroll Britt, Augustine C. O. Boateng, Hui Zhao, Francesca C. Ezeokonkwo, Chad Federwitz and Fayron Epps

Healthcare 2023, 11(9), 1319; https://doi.org/10.3390/healthcare11091319 - 04 May 2023

Cited by 7 | Viewed by 3414

Abstract

Older adults living with dementia experience progressive decline, prompting reliance on others for spiritual care and support. Despite a growing interest in studying persons living with dementia (PLwDs), empirical evidence on the spiritual needs of PLwDs has not been synthesized. Using the Whittemore [...] Read more.

Older adults living with dementia experience progressive decline, prompting reliance on others for spiritual care and support. Despite a growing interest in studying persons living with dementia (PLwDs), empirical evidence on the spiritual needs of PLwDs has not been synthesized. Using the Whittemore and Knafl method, this integrative review examined the literature from 2000 to 2022 on the spiritual care needs of PLwDs. We sought to identify characteristics of the spiritual needs of PLwDs and ways to address them. The ATLA Religion, CINAHL, PsycINFO, PubMed, and Socindex databases were used to search the literature, and 12 peer-reviewed articles met the inclusion criteria. Spiritual care needs varied across studies. Overall, findings support the importance of identifying PLwDs’ religious and spiritual backgrounds to inform person-centered care. Spiritual needs were identified as verbal and non-verbal expressions related to past meaning and religious and spiritual background and were not consistently addressed in care. Providers reported observing spiritual distress in the mild stage prompting the need for spiritual care. There is a great need for dementia-specific spiritual assessment tools and spiritual care interventions to support spiritual well-being in dementia care. Spiritual care involves facilitating religious rituals and providing spiritual group therapy and religious and spiritual activities. Full article

(This article belongs to the Special Issue Dementia and Care)

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