Dementia

Despite evidence that individuals’ virtues and character strengths can contribute to a sense of fulfillment, the majority of dementia research focuses on losses and decline. To date, virtues and character strengths in persons living with dementia is an understudied phenomena. This study begins to addresses this gap in the literature.

The objectives of this study were to: (1) examine the expression of virtues and character strengths in persons living with dementia in the early stages; and (2) share implications and recommendations for strengths-based clinical practice and future research.

Qualitative data was utilized to examine virtues and character strengths among persons living with dementia. This data was derived from semi-structured interviews with 25 persons living with dementia age 65 or older (average age of 77.88). The interviews were audio recorded with consent, professionally transcribed, audit checked, and subjected to Interpretive Phenomenological analysis which was informed by the Values in Action (VIA) framework.

Each of the virtues and 24 corresponding character strengths from the VIA framework were observed in this sample. The most frequently observed character strengths were love, spirituality, perseverance, and gratitude.

Persons with dementia continue to express virtues and character strengths in the context of cognitive and functional changes. Positive strengths-based research and clinical practice should highlight and build upon these individual virtues and character strengths.

People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard.

Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances.

Participants’ lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions.

People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs.

In the United Kingdom, the use of the terms ‘complex’ and ‘complexity’ alongside dementia is reflected in a number of policy and practice documents. However, there is a lack of evidence that explores how complexity is perceived, constructed and experienced by people with dementia, family carers and practitioners working in the NHS dementia inpatient assessment wards [dementia assessment wards].

To explore the meaning and concept of complexity in dementia from within the setting of a dementia assessment ward and develop a practice model.

The study was conducted over three phases: 1) an online electronic survey of UK national dementia leaders; 2) individual interviews and a focus group with dementia practitioners in two dementia assessment wards; 3) case studies of four patients with dementia resident on a dementia assessment ward which included their identified family carer/consultee, the named clinician on the ward involved in that person’s care and a care records review.

The findings highlighted that complexity is constructed through a number of interconnected and interrelated domains that vary in acuity. These findings have been developed into the ‘3 Fs Model of Complexity’ and the 3‘Fs’ stand for Fixed, Flexible and Fluctuating. The Fixed domain consists of six components which are always present in complexity. The Flexible domain consists of 14 components and a person with dementia may experience any number of Flexible domain components at any one time. The Fluctuating domain highlights that all components have the ability to vary in their acuity.

The ‘3 Fs Model of Complexity’ may facilitate a more holistic view of a person with dementia than when ‘symptoms’ are viewed in isolation. Going forward, and subject to further refinement and testing, the ‘3 Fs Model of Complexity’ could help guide the selection of tailored, personalised interventions for people with dementia, including formulation approaches.

The depiction of dementia in public discourse tends to operate on two levels: the tragedy discourse or the living well with dementia discourse, where metaphors play a decisive role in the characterization of the condition and the voice of those living with the condition is usually underrepresented.

This article analyzes whether and how mainstream discourse on dementia is reworked in first-person accounts of the disease online and explores the attitudes and assumptions about dementia that illness blogs reflect and defy.

Drawing on Conceptual Metaphor Theory, the article analyzes a corpus of 10 blogs (622 posts) written by individuals living with early-onset dementia to identify the metaphors used to depict dementia, its impact on the self and its social and relational aspects. Metaphor identification was based on the PRAGGLEJAZ metaphor identification procedure.

The study demonstrates that across blogs no single metaphor alone is capable of capturing the complexity of the dementia experience; instead multiple metaphors are deployed to provide a characterization of the multiple faces of this condition. In this way blogs transcend and reshape the reductionist view of dementia that emerges from the either/or dichotomy of the tragedy versus living well with dementia discourses that dominate in media representations. By reshaping some of the metaphors used in mainstream discourse and introducing new ones, blog narratives draw attention to the complex nature of the experience of dementia, acknowledging both the suffering and social and functional losses that the condition brings, while also claiming recognition for personhood, agency, validation, and the aspiration to grow beyond the diagnosis and live a valued life as part of a family and community.

Overall, this study demonstrates that metaphor is a useful tool for providing insights into people’s experience of dementia and that blogs are a platform where stereotypes may be defied and mainstream representations of dementia reworked offering a more holistic view of the condition and granting narrative agency to those who live with dementia.

Narratives of dementia can undermine the ability of people to live well. Positive psychology, concerned with the cultivation of personal strengths, is a model through which people’s capacity to have positive experiences can be researched. This study explored the meanings and experiences of hope, a positive psychological construct found to facilitate well-being, in people with dementia.

People with dementia submitted poems about the meanings and their experiences of hope through an online platform. The submitted poems (n = 29) underwent thematic analysis.

There were three main themes: (1) “hope is light in the darkness” encapsulated the meaning ascribed to hope as a resource that spotlights what is still possible, (2) “poetry gives voice to experiences of hope” captured the role of poetry in communicating the otherwise elusive concept of hope, and (3)“peers uphold hope and cast away the darkness” captured that participants’ hope was blocked by stigmatising views held and expressed by others but facilitated through positive social interactions.

People are capable of having hope in the context of dementia, with hope being a uniquely functional strength that supports wellbeing. Health professionals, family and society have a clear role in supporting people with dementia to maintain their hope.

Every person has the right to autonomy, and to be involved in decisions about their care. When persons with dementia have difficulties in expressing what they want, their autonomy is challenged. Staff should strive to involve the person in care decisions, to obtain consent and to avoid the use of coercion and restraints. However, care without consent exists and coercion and restraints are being used. In order to improve care, further knowledge is warranted.

The purpose of this study was to explore staff’s experiences of obtaining consent when caring for persons with dementia.

In total 14 focus group interviews were conducted with staff with experience of dementia care who work in either home care or residential care in Sweden. An inductive qualitative content analysis was used to analyze the collected data.

Three categories were generated describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as the decision-makers, and the viability of the consent. Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Common to all three categories was the significance of the relationship between the person with dementia and staff: getting to know the person, recognizing the person’s response in terms of their facial expressions and body language as well as being able to explain and justify specific actions to the person.

Staff need better conditions in dementia care, including training and time to reflect on how to obtain consent. A person-centered approach can be one way to develop care and ensure that persons with dementia are allowed autonomy and to share in making decisions.

Media discourses about people living with dementia and carers contribute to the ways in which public, social spaces are designed, planned, and used. Negative media discourses play an important role in the socio-spatial exclusion of people living with dementia and stigmatising and dehumanising language prevents the achievement of genuine, rights-based dementia-friendly environments. Because the media plays a powerful role in shaping public attitudes, there is a need to understand media constructions of people living with dementia and carers in relation to their socio-spatial rights, which is the aim of this paper.

A Foucauldian-inspired discourse analysis (FDA) was conducted on the public news media texts of one regional Australian city, to identify discourses relating to the socio-spatial rights of people living with dementia and carers. Lefebvre’s (1996) ‘right to the city’ concept was used as a conceptual framework, to define socio-spatial rights.

Analysis revealed discourses relating to the right to urban citizenship, the right to difference and socio-spatial justice. Representations of participatory democracy, important to urban citizenship, are absent, as are the voices of people living with dementia. Through advocacy from others and a lens of citizenship, socio-spatial rights for people living with dementia, and in one instance carers, are recognised, in the context of dementia-awareness and dementia-friendly initiatives. While a lens of personhood constructs people living with dementia as historical and relational beings, a citizenship lens adds a spatial dimension.

Advocacy and the lenses of personhood and citizenship are important in creating positive constructions of people living with dementia, however, their participation in decision-making processes would confer an active citizenship status, and the inclusion of their authentic voices in media discourse would contribute to raising awareness towards rights-based dementia-friendly communities.

People with young onset dementia can experience stigmatization and social isolation. Peer support provides an opportunity for social connection and support. However, access to in-person peer support groups varies across the UK, and during the COVID-19 pandemic in-person peer support groups moved online.

We explored the experiences of people with young onset dementia attending peer support meetings through online videoconferencing platforms, and identified barriers and facilitators.

A focus group study with existing peer support groups for people with young onset dementia that had their meetings online was conducted. Participants were people living with young onset dementia. Participants were recruited through convenience and purposeful sampling. Initial contact was made with the group facilitator to discuss the study purposes and assess eligibility of the group members. The data was analysed thematically by two independent researchers, using an inductive approach.

Four focus groups with UK-based peer support groups were conducted through the group’s usual platform, including 20 participants. Through online peer support people stayed connected during the pandemic. It provided opportunities to meet people from different places and be involved in research projects. People found it a convenient way of connecting with others without having to travel. However, some missed in-person interaction and digital exclusion and challenges to navigate different platforms were identified as barriers. Organisational skills of the facilitator and support with getting into meetings can help overcome these challenges.

Online platforms can make peer support more accessible for people with young onset dementia as it overcomes geographical barriers as well as barriers for those who feel uncomfortable attending an in-person group. Researchers and policy makers should explore how to implement and overcome barriers to online peer support, so that peer support is more widely accessible and clearly signposted to people with young onset dementia.

The aim of this systematic review is to identify factors that influence relationship quality in couples living with dementia. Previous research has shown how maintaining a positive spousal relationship quality is important for quality of life and coping for both the caregiver and the person with dementia. Knowledge of influential factors could contribute to a deeper understanding of the value of a couple-centred clinical practice and research, within the field of dementia.

Systematic procedures to database search, screening, data extraction and synthesis were followed. Qualitative, quantitative and mixed methods studies were included. A narrative synthesis was conducted through narrative summaries of included studies, thematic analysis and narrative descriptions of factors influencing relationship quality.

39 studies were included in the study: 28 qualitative, 8 quantitative and 3 mixed methods. Through the narrative synthesis, 20 factors were identified. The factors were grouped into two overarching themes: The world of us and The world outside of us, and further to six influencing factor categories: (1) Attitudes and strategies, (2) Behaviour and activities, (3) Emotional connectedness, (4) Activities and experiences outside of the home, (5) Social behaviour and roles, and (6) Belonging and safety.

The identified factors influence relationship quality in couples living with dementia on various levels. The findings of this review study should inform clinical, couple-centred dementia care practise and intervention studies, and further research should seek to gain deeper understandings of the individual factors and broader understandings of the correlations between factors.