This thesis examines the association between personal contact with people with intellectual disabilities and schizophrenia and literacy and stigma of the lay public. Contact is seen as a key route to tackling stigma, however the research in intellectual disabilities and mental health is limited by many previous studies assessing contact as present or absent only. Part one is a literature review examining the relationship between personal contact with people with intellectual disabilities and attitudes. There has been limited research examining public attitudes towards people with intellectual disabilities, especially in comparison to the attention given to perceptions of mental illness. The findings indicate contact with people with intellectual disabilities generally has a positive effect on lay attitudes, but that the relationship is affected by a number of variables. Quality of contact in particular may be important. Part two is an empirical paper investigating whether contact as a nuanced variable, including the factors: closeness, frequency and nature, is better than a binary variable assessing contact as present or absent only, in explaining the relationship between literacy, causal attributions and stigma, for both intellectual disabilities and schizophrenia. The results indicate future research examining contact should consider other factors, particularly the closeness of the relationship. The findings are considered in relation to anti-stigma campaigns, the evidence base and directions for future research. Part three is a critical review of the thesis. The review examines the concepts and methodology used and considers wider issues relating to stigma research. The review concludes with personal reflections on the process of conducting the thesis.

Objectives: Psychological symptoms are highly prevalent, and negatively impact upon wellbeing in both people with dementia and caregivers. Despite this, little is known about whether there is a concordance in psychological symptoms between members of this dyad. This review examined the current evidence for a concordance in depression and anxiety symptoms between people with dementia and their family caregivers. Method: Studies were included if they examined the association in either depression or anxiety symptoms between the Person with Dementia (PwD) and family caregiver, using quantitative measures or diagnostic clinical interview. Results: Three longitudinal studies and 14 cross-sectional studies were identified that met criteria. All three longitudinal studies found a positive association in symptoms of depression between the PwD and caregiver compared to five out of 14 cross-sectional studies. The one study in the review that examined symptoms of anxiety found no association. Variables that influenced whether a concordance in symptoms was observed included informant source for measures of depression in the PwD, cohabitation, symptom severity and sample size. However, conclusions were limited as only three studies in the review had an explicit aim of examining the association in psychological symptoms between dyad members. Conclusions: Further research is needed which explicitly focuses on whether there is a concordance in psychological symptoms between people with dementia and their caregivers, including identifying which variables influence whether concordance occurs. This can enable interpersonal factors that contribute to and maintain psychological symptoms in dyad members to be identified and guide interventions.

Background Research suggests that healthcare professionals are an occupational group at significant risk of the negative consequences of work stress (Kirkcaldy & Martin, 2000). Front-line staff working with older adults with dementia often work for long hours in stressful, challenging environments (Deutschman, 2000). Much research has shown a link between interventions utilising mindfulness based approaches and reduced stress, however, it is unclear whether staff intuitively use techniques akin to mindfulness to avoid or reduce stress. Aim The study aimed to explore the experiences of managing work pressures in front-line NHS staff caring for older adults with dementia. It also aimed to explore the processes by which staff maintain a sense of wellbeing and to generate a theory by which to understand these. Method Ten staff from three inpatient dementia wards took part in qualitative interviews which were then analysed using constructivist grounded theory methods (Charmaz, 2000). Findings A theoretical framework was -generated which highlights the role of work pressures and work enjoymenUsatisfaction on responses to work pressure. Multiple work pressures exist which can be viewed as either structural or interpersonal in nature. Work satisfaction and enjoyment can influence responses to work pressures and may lead to the adoption of more adaptive strategies such mindfulness and compassion. Conclusions Staff employ a range of naturally occurring techniques which are both mindful and compassionate in nature. There are a number of intuitive ways of handling extremely high pressures and these tend to be related to interpersonal factors which act as key natural protective factors in being able to deal with such pressures in this environment. However, it seems that these natural strengths can be enhanced through structural factors (such as regular breaks and adequate resources). It may be possible to make structural changes at an organisation level to enhance the natural resilience of staff.

Research evidence indicates that people with dementia are at increased risk of potentially inappropriate and inconsistent medication use in both healthcare and community settings. However, there are few available data to indicate why this might be so. This thesis explored the way in which medications are discussed, decided upon, managed and administered to people with dementia and includes the perspectives of both healthcare professionals and informal caregivers. Respondent interviews were conducted with healthcare professionals (n=18) and bereaved caregivers (n=10) to explore decision-making for pharmacological management of people with dementia and its impact on carer satisfaction with end-of-life care. Two studies explored the administration of and adherence to, medications for people with dementia. Respondent interviews were conducted with nurses (n= 15) to identify barriers and facilitators to administration and adherence for nursing home residents. A self-report structured questionnaire was used to investigate informal carers' (n=20) beliefs about medications and to identify through proxy report, adherence for patients with dementia. An online structured questionnaire was used with final-year undergraduate students (n=281) of Pharmacy, Medicine and Nursing to explore attitudes towards dementia and students' self reported perceived competence and confidence in providing palliative care to people with dementia. Decision-making about medication use was challenging for healthcare professionals and carers alike. Carer satisfaction and good clinical outcomes for patients were associated with positive healthcare professional-carer relationships. Medicine administration to residents with dementia was challenging and required the use of personal, professional and psychosocial skills. Interdisciplinary collaboration was perceived by healthcare professionals to support appropriate pharmacological management of people with dementia. Informal carers held positive attitudes towards medication use and were largely adherent to prescribed regimens; however, a low response rate and skewed responses for adherence limited these findings. I I Final year undergraduate students reported positive attitudes towards people with dementia. Medicine and nursing students indicated low confidence regarding pain management whilst pharmacy students reported high confidence in assisting other healthcare professionals in this task. The findings identified some challenges and facilitators in the provision of pharmacological care for people with dementia. Further training, education and support at undergraduate and professional level are required to support healthcare professionals, particularly in regard to the optimal use of medications. Interdisciplinary collaboration should be encouraged to support better use of medicines in those with dementia.

One of the consequences of an ageing demographic is the increase in the incidence of illnesses such as dementia. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The role of the physical environment as part of a holistic approach to caring for people with dementia is widely recognised. There is a need for specialist support and care, placing a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia. This thesis aims to improve design for dementia in long term care settings in Northern Ireland. The purpose of this was to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. The outcome is intended to improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes. Ethical issues were considered throughout the thesis and in the research design which used a mixed methods approach. This involved an initial questionnaire to home managers (based on leading design recommendations), semi-structured interviews with the staff in the long term care settings and the resident's next of kin and a wayfinding task (which employed ethnographic methods). Additionally, Space Syntax methodologies were used to examine the physical properties of the architectural layout. Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

The aim of the study is to assess the impact of dementia in low and middle income countries (LAMICs) on service and family costs and to assess the impact of dependency and other factors on costs. A prevalence-based bottom up cost-of-illness study was carried out using the database of the 10/66 dementia project in seven LAMICs (11sites, n=15,022). The total cost was divided into cost of medical care, informal care and paid home care. The perspective of costs included both the public and private level. Cost of medical care at the private level was the out-of-pocket expenses. Health service use was valued according to country specific unit cost based on UK unit costs and WHO-CHOICE ratios. Cost of informal care at the private level was valued based on real salary loss and on average wages at the public level. Regression models were used to identify predictors of cost and attributable costs of dementia. The results showed that the average total costs for people with dementia were I$1887 at the private level and I$6750 at the public level. At the public level, 94% of total costs were due to social care, and 90.4% of social care costs were due to informal care. Physical impairment and Behavioural and psychological symptoms of dementia (BPSD) led to higher costs of informal care, but not for medical care. Average attributable costs of dementia were I$5164, and were higher than for depression and other chronic diseases. Costs increased with dementia severity. Estimates of total dementia costs are substantial and most of the care is due to support from unpaid family members. Interventions should be introduced both for dementia patients and their carers in the early stages of the condition dementia, so as to decrease the cost as well as improving quality of life.

This thesis addresses computer-mediated interventions for carers of people with dementia and is comprised of three parts. Part 1 is a literature review of computer-mediated interventions for carers of people with dementia. It systematically reviews research studies in this field published after January 2000. Part 2, the empirical paper, is a mixed-methods evaluation of Talking Point, the UK Alzheimer’s Society’s online peer support forum for carers of people with dementia. Changes in new users’ depression, anxiety and quality of the relationship with the person with dementia are examined over a 12 week period, and follow-up qualitative interviews are conducted with eight participants. Part 3 is a critical appraisal of, and reflection on, the research and the manner in which it was conducted. It focuses on the following areas: issues in the evaluation of interventions for carers of people with dementia; the challenges of conducting research in a non-face-to-face context; the interview process; the extent of conclusions that can be drawn from the research and; future research.

One of the most widespread chronic diseases within the older population is a form of dementia known as Alzheimer’s disease (AD). AD is a progressive disease of the brain, which effects a person’s memory, thought and judgment. The unmet needs of people with AD (PwAD) have been identified as, the need to remember, maintain social contact, enhance perceived safety and support with regards to activities of daily living (ADL). In order to investigate how technology could be used to address the unmet needs of PwAD and their caregivers a number of tasks were carried out. Primarily this involved the design, development and evaluation of a suite of smartphone and computer based applications for PwAD and their caregivers. Caregiver perception on assistive technologies for PwAD and possible ways to enhance device adherence were also investigated alongside identifying the main challenges for the development of technology to support AD care. Evaluations to assess application usability were carried out on a control group of 25 assistive technology experts and a group of 12 caregivers for PwAD. The methods of data collection used included structured questionnaires, semi-structured questionnaires, interviews and data collected from smartphone handsets. Results from the research found that technology may be used in order to assist PwAD and their caregivers with the top unmet needs, however, a number of challenges and barriers still remained to be addressed. These included user perception, adequate levels of user training, evident benefits and the option to personalise assistive devices. Overall findings from the research highlighted recommendations to consider when designing and implementing assistive technology for both PwAD and their caregivers.

Recent studies have shown the effectiveness of errorless learning principles in memory rehabilitation for people with dementia whilst studies with people with KorsakotT s Syndrome support effortful methods. However, some effortful methods may elicit errors. so there may be a trade-off relationship between effort and error. The present study compares, in a within-subjects design, the efficacy of four different learning techniques that vary in the extent to which errors are minimised and the degree to which effort is required. The techniques (vanishing cues, forward cues, target selection, paired associate) were used to teach both previously familiar and novel face-name associations to ten people with a diagnosis of early-stage dementia. Best results were achieved in the procedures that elicited most errors whilst learning (forward cues, target selection). It was argued that these procedures also incurred more cognitive effort. thus leading to deeper levels of processing. compared to more passive or shallow processing involved in paired associations and vanishing cues. Recall was also better following cued recall and recognition tasks compared to free recall. which suggested that learning in dementia is facilitated with support at encoding and retrieval. There has also been much debate in current literature as to whether implicit or explicit memory, or both, facilitates interventions using errorless learning. This study aimed to explore this by assessing both implicit and explicit memory for the stimulus items. There was no correlation between recall using implicit and explicit memory tasks, which suggested success on explicit memory tasks might not be due to implicit memory, but this interpretation was challenged. Multiple single case analyses also highlighted the heterogeneity of learning in dementia and emphasised the importance of integrating interpersonal and social factors when developing successful individually-based cognitive rehabilitation techniques.

No description available.