Responses to dementia : a qualitative exploration of self and others

This portfolio thesis contains three parts: a systematic literature review, an empirical paper, and a set of appendices.Person-centred and social constructionist approaches to dementia have proposed that the experience of living with the condition is influenced by the responses of others towards the individual, and the personal response of the individual to dementia.Part one is a systematic literature review that therefore critically evaluates and synthesizes the qualitative literature pertaining to the way in which people with dementia experience the responses of others towards them. The review aims to further our understanding of how people with dementia perceive the responses of others and the impact that these have upon them. This is deemed to be an important area to address given that theoretical understandings of dementia assign a critical role to the responses of others in influencing an individual’s experience of dementia, and yet this aspect of subjective experience has been overlooked in previous reviews. Following a systematic search of the literature, 23 studies were suitable for review based on the inclusion criteria. A critical interpretative synthesis was conducted, leading to the development of four main themes to capture findings across the reviewed literature: ‘Social outcasting – being treated as an other’; ‘Social relegation – being treated as lesser’; ‘The impact of others’ responses’; and ‘Strategies to manage the responses of others’. These themes and the subthemes within them are compared and contrasted to the themes developed by researchers in their original findings, paying attention to the discourses that may have been influencing their interpretation. The strength of the evidence is evaluated, and implications for clinical research and practice discussed.Part two is an empirical paper investigating people’s personal responses to dementia, focusing upon subjective experiences of growth in older people living with dementia. A qualitative methodology was utilised, using semi-structured interviews to investigate participants’ experiences of positive and/or meaningful changes since living with dementia. Interviews were conducted with nine older people diagnosed with dementia living in the community. Interpretative phenomenological analysis was used to explore participants’ subjective experiences and how they had made sense of these. From this, a theme of ‘Moving Forward’ was developed, containing five subthemes. A second theme of ‘Living in the Now’ was also developed, containing two further subthemes. The findings are discussed with consideration of the discourses we use to talk about dementia, and the implications of a growth discourse to clinical research and practice.Part three consists of a set of appendices for both systematic literature review and empirical paper, including a reflective account of the research process and a statement of epistemology

Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia

Feasibility and outcomes of Fibreoptic Endoscopic Evaluation of Swallowing following prophylactic swallowing rehabilitation in head and neck cancer

Objectives Investigate the feasibility and outcomes of fibreoptic endoscopic evaluation of swallowing (FEES) following a programme of prophylactic swallowing exercises in head and neck cancer (HNC) patients treated with radiotherapy. Design Prospective, single cohort, feasibility study. Setting Three head and neck cancer centres in Scotland. Participants Pre‐radiotherapy HNC patients who consented to participate in a prophylactic swallowing intervention. Outcome measures FEES recruitment and retention rates, assessment acceptability and compliance, qualitative process evaluation. Results Higher rates of recruitment and retention were achieved in centres where FEES equipment was available on site. Travel and anticipated discomfort were barriers to recruitment. Data completion was high for all rating scales, with goo d reliability. Following radiotherapy, swallowing safety significantly deteriorated for liquid boluses (p=0.005‐0.03); pharyngeal residue increased for liquid and semi‐solid boluses. Pharyngo‐laryngeal oedema was present pre‐treatment and significantly increased post‐radiotherapy (p=0.001). Patients generally reported positive experience of FEES for their own learning and establishing a baseline. Conclusions FEES is an acceptable method of assessing patients for a prophylactic swallowing intervention and offers some additional information missing from VF. Barriers have been identified and should be taken into account in order to maximise recruitment for future trials

Assessment of murine collagen-induced arthritis by longitudinal non-invasive duplexed molecular optical imaging

In the present study we evaluated the use of four commercially available fluorescent probes to monitor disease activity in murine CIA and its suppression during glucocorticoid therapy.  Arthritis was induced in male DBA/1 mice by immunization with type II collagen in Complete Freund's Adjuvant, followed by a boost of collagen in PBS. Four fluorescent probes from PerkinElmer in combination [ProSense 750 fluorescent activatable sensor technology (FAST) with Neutrophil Elastase 680 FAST and MMPSense 750 FAST with CatK 680 FAST] were used to monitor disease development from day 5 through to day 40 post-immunization. Fluorescence generated in vivo by the probes was correlated with clinical and histological score and paw measurements.  The fluorescence intensity emitted by each probe was shown to correlate with the conventional measurements of disease. The highest degree of correlation was observed with ProSense 750 FAST in combination with Neutrophil Elastase 680 FAST; these probes were then used to successfully assess CIA suppression during dexamethasone treatment.  We have demonstrated that longitudinal non-invasive duplexed optical fluorescence imaging provides a simple assessment of arthritic disease activity within the joints of mice following the induction of CIA and may represent a powerful tool to monitor the efficacy of drug treatments in preclinical studies

Novel protective role for MAP kinase phosphatase 2 in inflammatory arthritis

Objectives: We have previously shown mitogen-activated protein kinase phosphatase 2 (MKP-2) to be a key regulator of proinflammatory cytokines in macrophages. In the study presented here, we investigated the role of MKP-2 in inflammatory arthritis with a particular focus on neutrophils. Methods: T o achieve this, we subjected MKP-2 deficient and wild type mice to collagen antibody induced arthritis, an innate model of arthritis, and determined disease pathology. To further our investigation, we depleted neutrophils in a prophylactic and therapeutic fashion. Last, we used chemotaxis assays to analyse the impact of MKP- 2 deletion on neutrophil migration. Results MKP-2-/- mice showed a significant increase in disease pathology linked to elevated levels of proarthritic cytokines and chemokines TNF-α, IL-6 and MCP-1 in comparison to wild type controls. This phenotype is prevented or abolished after administration of neutrophil depleting antibody prior or after onset of disease, respectively. While MCP-1 levels were not affected, neutrophil depletion diminished TNF-α and reduced IL-6, thus linking these cytokines to neutrophils. In vivo imaging showed that MKP-2-/- mice had an increased influx of neutrophils into affected joints, which was higher and potentially prolonged than in wild type animals. Furthermore, using chemotaxis assays we revealed that MKP-2 deficient neutrophils migrate faster towards a Leukotriene B4 gradient. This process correlated with a reduced phosphorylation of ERK in MKP-2-/- neutrophils. Conclusions: T his is the first study to show a protective role for MKP-2 in inflammatory arthritis

Peer-delivery of a gender-specific smoking cessation intervention for women living in disadvantaged communities in Ireland We Can Quit2 (WCQ2) – a pilot cluster randomized controlled trial

Introduction. The We Can Quit2 (WCQ2) pilot trial assessed the feasibility of ‘We Can Quit’ (WCQ), a community-based stop-smoking programme delivered by trained community facilitators, based on the socio-ecological framework and developed using a Community-based Participatory Research approach, targeting women living in socioeconomically disadvantaged (SED) areas of Ireland. Methods. A pragmatic cluster RCT with a process evaluation was conducted in four matched pairs of SED districts (8-10,000 women per district). Districts were independently randomised to WCQ (group support + nicotine replacement therapy), or to individual support delivered by health professionals. Participants were adult women smokers interested in quitting, living or working in trial districts. Recruitment of districts and 194 women in four waves (49 women per wave); retention at 12-weeks and 6-months; fidelity to intervention delivery and acceptability of trial-related processes were assessed. Validated smoking abstinence at 12-week and 6-months post-intervention was recorded, missing data assumed as continued smoking. Results. Eight districts were recruited. 125/188 (66.5%) eligible women consented. The 49 women target was reached in wave4. Retention at 12-weeks was [Intervention (I): 55.4%; Control (C): 51.7%], at 6-months, [I: 47.7%; C: 46.7%]. Smoking abstinence at 12-weeks was [I: 23.1%, (95% CI 14.5-34.7%); C: 13%, (95% CI 6.9-24.1%)]. 83.8% of session activities were delivered. Trial-related processes were acceptable to facilitators. Low literacy was highlighted as a barrier for participants’ acceptability. Conclusions. WCQ was feasible to deliver by trained facilitators and indicated a positive direction in abstinence rates. Low literacy will need to be addressed in a future trial design

The UK medical education database (UKMED) what is it?:Why and how might you use it?

The development of UKMED has not been directly funded by but has received support from the General Medical Council and Medical Schools Council as well as staff time from all participating organisations.Peer reviewedPublisher PD