Patients with Alzheimer’s Disease (AD) demonstrate a sensitive and specific short-term memory impairment for visual bindings (e.g. the combination of shapes and colours) that is absent in healthy ageing (Parra et al., 2009) and other dementias (Della Sala et al., 2012). This impairment is also seen in cases of asymptomatic, familial AD (Parra et al., 2010). The visual short term memory binding (VSTMB) impairment in AD has clear clinical and neuropsychological implications which are investigated in this thesis. Firstly, the utility of the VSTMB paradigm was contrasted with the Free and Cued Selective Reminding Task with Immediate Recall (FCSRT-IR) – which has recently been posited as a useful diagnostic marker of AD pathology (Dubois et al., 2014). The results indicated that the former is not affected by age, where the latter is, suggesting that the VSTMB paradigm provides a suitable baseline to measure cognitive decline associated with AD. The development of a parallel version of the FCSRT-IR is also reported. Secondly, a 24-week longitudinal study of patients receiving treatment for AD (donepezil hydrochloride) revealed that patients who respond to this treatment on cognitive scales also experience change in VSTMB performance. These responders, however, did not significantly improve on the FCSRT-IR during the study. This suggests that anticholinergic treatment may have an effect on VSTMB performance. Additionally, a meta-analysis that investigates the effect of a study’s funding on donepezil RCT outcome showed that industry-funded studies report larger changes in cognition than independent studies. Lastly, an auditory binding experimental paradigm was developed, with a view to reveal a non-visual binding impairment in AD, investigating whether the binding impairment reflects a general or modality-specific memory impairment. The overall conclusions of this thesis confirm that the VSTMB impairment has significant promise as an index of AD. The auditory binding paradigm, by contrast, shares conceptual similarity with the VSTMB paradigm, but may have restricted clinical use within the AD patient population.

Evidence highlights the need to support people with dementia and their family caregivers together as a dyad and mindfulness has been suggested as one intervention. This research aimed to explore dyads’ experiences of attending an eight-week MBSR intervention. Five couples were recruited, using a mixed method multiple case study design with follow-up. Data was collected using self-report standardised measures, group observations and semi-structured interviews. Thematic analysis and descriptive statistics were used to analyse the data. Although quantitative analysis was inconclusive, qualitative analysis suggests some participants found the intervention a positive experience, benefitting from completing the intervention as a dyad and attending with people with related problems. Specific mindfulness benefits were also reported. Further larger scale research is needed to support these findings and explore specific benefits mindfulness interventions has over other interventions, before being suggested as a helpful clinical intervention.

Background:As the life expectancy of the population increases, more people are diagnosed with dementia. The diagnosis causes a lack of self-care for the affected person, which can result in a relative taking up the role of caregiver. Thus, the quality of life of the relatives may deteriorate when their own needs are disregarded. Relatives support is important in everyday life. Aim: The aim of the study was to investigate family caregivers experiences of caring for a relative with dementia. Method:A literature review based on 13 qualitative articles, selected on the basis of inclusion criteria. Results: After compiling 13 scientific articles, four themes emerged; the life situation gets a turnaround, the disease changed everyday life, the caregiver's experience of health and the importance of knowledge and support for a good care.The caregiver experienced the changed life situation demanding. New roles as well as changing family relationships caused difficulties in life. The dementia disease caused personality changes that forced the relative to adapt the everyday life to the relative. The physical and mental health of the caregiver was adversely affected by the situation. Relatives felt that feelings of anxiety dominated over the loved one and in the thoughts of the future. Lack of information and knowledge caused difficulties in the care of the dementia patient. The importance of support in everyday life emerged. Conclusion: The life situation changes and life forces adaptation after dementia. Formal support is significant in everyday life. Relatives experience psychological and physical illness. Lack of knowledge and information can be an important cause of perceived bad health, access to support should be facilitated. / Bakgrund: I takt med att befolkningens livslängd ökar, diagnostiseras fler individer med demenssjukdom. Diagnosen medför bristande självomsorg för den drabbade vilket kan resultera i att en anhörig intar rollen som anhörigvårdare. Vardagen förändras drastiskt och tid spenderas till att hjälpa den närstående. Därmed kan anhörigas livskvalité komma att försämras när de egna behoven åsidosätts. Anhörigstöd är av stor betydelse i vardagen. Syfte: Syftet med studien var att undersöka anhörigas upplevelser av att vårda en närstående med demenssjukdom. Metod: En litteraturstudie baserad på kvalitativa vetenskapliga artiklar. Resultat: Efter sammanställning av 13 vetenskapliga artiklar framkom fyra teman; livssituationen får en vändning, sjukdomen förändrade vardagen, anhörigas upplevelse av hälsan och vikten av kunskap och stöd för en god omvårdnad. Anhöriga upplevde den förändrade livssituationen krävande. Nya roller samt förändrade familjerelationer orsakade svårigheter i livet. Demenssjukdomen orsakade personlighetsförändringar som tvingade den anhöriga att anpassa vardagen efter den närstående. Anhörigas fysiska och psykiska hälsotillstånd påverkades negativt av situationen. Anhöriga upplevde oroskänslor över den närstående samt tankar om framtiden. Brist på information och kunskap orsakade svårigheter i omvårdnaden av den närstående. Vikten av stöd i vardagen framkom. Slutsats: Livssituationen förändras och livet tvingas anpassas efter demenssjukdomen. Formellt stöd är betydande i vardagen. Anhöriga upplever psykisk såväl fysisk ohälsa. Bristande kunskap och information kan vara en betydande orsak till upplevd ohälsa, tillgången till stöd bör underlättas.

Background: There are 850,000 people living with dementia in the UK; this number includes Deaf people who use British Sign Language, but little is known of their experience or how services might be improved to support them and their carers, who are often also Deaf. Deaf people are routinely excluded from reports on linguistic/cultural minorities and dementia because their status, as such, is not recognised. They are very different from the much larger population of older people who lose their hearing and may also have dementia. Aims and Objectives: i) To explore the everyday experiences of living with dementia from the perspectives of Deaf BSL users with dementia and their care partners; ii) To explore the general Deaf community's knowledge and understanding of dementia, its symptoms and impact on everyday life. Method: Three focus groups were held with a total of 26 Deaf BSL users, who did not have dementia, to gauge their knowledge about dementia and where they might go for support. Four Deaf BSL users living with dementia with five care partners took part in two semi-structured interviews 6-8 weeks apart. Data were analysed using thematic analysis, storied stories and narrative analysis. All data were collected in BSL by a Deaf researcher. ResultsLack of access to information and support in BSL impeded early recognition of symptoms, access to diagnosis, and support within the Deaf community. Personal narratives revealed Deaf people's resilience while living with dementia. Narratives challenged key concerns of personhood, citizenship and embodiment from a different perspective because Deaf people are not usually regarded as full citizens and their capacity is routinely challenged regardless of dementia. Furthermore, embodiment of communication and language is a life-long experience, not residual adaptation. Visual strategies to support agency were also documented. Conclusions: The Deaf community needs provision of accessible and understandable information about dementia in BSL. Mainstream dementia support services should review their accessibility of effective support for Deaf BSL users who have been diagnosed with dementia and their families. However, Deaf people with dementia remain resilient and positive about their everyday lives with the support of their familial relationships.

Pre-existing dementia is associated with poorer functional outcome after stroke. It is unclear however whether this is due to lack of access to, or inequality in, stroke rehabilitation. This PhD used mixed methods to understand whether pre-existing dementia is a factor considered by clinicians when referring/admitting patients for rehabilitation, when providing rehabilitation interventions, and whether there is a difference in rehabilitation received by patients with and without pre-existing dementia. A background literature review informed the first study, which was a systematic review examining factors influencing clinical decision-making about access to stroke rehabilitation. The systematic review suggested that pre-stroke cognition influenced referrals/admission to rehabilitation, however, no studies examined this specifically. The qualitative study therefore used interviews (n=23) to explore clinicians experiences of decision-making about rehabilitation for patients with pre-existing dementia/cognitive impairments. The findings highlighted that clinicians own knowledge influenced their decision-making, with a common perception that people with pre-existing cognitive impairment lack potential to benefit from rehabilitation. The third study, a prospective cohort study, examined differences in rehabilitation received by patients with and without pre-existing cognitive impairments (n=139). People with pre-existing cognitive impairments received less rehabilitation than those without, particularly physiotherapy and referral to community therapies and more non-patient facing occupational therapy. This PhD identified that people with pre-existing dementia/cognitive impairment receive less rehabilitation when compared to those without. This may be, in part, due to clinicians decision-making about which patients should receive stroke rehabilitation. These findings have multiple clinical implications, particularly around the number of patients in stroke services with undiagnosed pre-existing cognitive impairment. Decisions can become more equitable by ensuring clinicians have access to relevant education, training and skills to work alongside patients with pre-existing dementia/cognitive impairments.

Few research studies have examined the panoramic landscape of family caregivers from dementia diagnosis to the final bereavement of the person with dementia for whom they are caring. The route and pathways of care undertaken during a caregiver's journey will be individual to each person, yet invariably there will be some similarities as to how they anticipate, approach and mange this journey. From the caregiver's perspective, caring for someone with dementia is related to more than the cognitive loss experienced by their family member, there are many losses involved, This research study aims to explore the complex emotional experiences of thirty caregivers in relation to sense of self. change, grief, loss and bereavement, to elucidate a deeper understanding of the lived experience, the perceived and understood reality of the experiential journey of caregivers. To explore the experiences of caregiving, this research study uses a hermeneutic phenomenological approach and draws on an adaptation of the theoretical framework of anticipatory grief and loss by Fulton and Fulton (1971) and Fulton and Gottesman (1980). The study uses a convenience sample and semi structured interview format and involves two non-comparative participant groups of family caregivers living in urban and rural communities within the North East of England. Group one comprises of twenty bereaved participants, nineteen of whom are spousal caregivers and one adult-caregiving daughter, who were interviewed once to explicated a retrospective perspective of the caring experience. Group two comprises of ten participants, nine spousal caregivers and one adult-caregiving daughter, who are currently caring for a family member living with an advanced stage experience of dementia. Group two participants were interviewed on three occasions across an eighteen-month time period to explore the retrospective and prospective experience of their caregiving role. The analysis of data reveals expressions of change, grief and loss within a complex and tri-dimensional landscape. Within this landscape, participants highlight defined periods of their journey, particularly with regard to their experience of a protracted middle period, which they referred to as being "the long road". However, intersecting with this layered landscape, the analysis of data also reveals a key aspect of caregiving - the emergence of a conceptual framework involving three interconnected yet fluctuating schemas of self experienced by participants. the first scheme, the individual 'me-self'. related to the participant's perception of their core self and envisaged sense of self. the second schema, the 'relationship-self', illustrates participant's physical and psychological experiences and bonded connection between themselves and the cared-for spousal partner or parent, as well as other family members and care workers. The third schema, the 'caregiving-self', is associated with the acquisition and undertaking of their role of familial caregiver. The findings of this study highlight the 'lived-world' experience of family caregivers as being a journey which subjects them to a cyclical maelstrom of emotion and fluctuating perception of their schemas of self.

Background: Interest in resilience has rapidly increased over recent years because of its potential impact on health, well-being and quality of life. However, despite the increasing prevalence of dementia, there is a lack of resilience research involving people diagnosed with this condition. Therefore, little is known about what it is that enables people to live well with dementia and continue to lead successful and meaningful lives. Even small delays in the onset and progression of dementia have the potential to significantly reduce its global burden. More specifically, studies have shown an association between social engagement and reduced risk of cognitive decline and incident dementia and consequently there is growing interest in the effect of increasing social interaction on cognition. Objectives: This thesis comprises two parts. Initially, a systematic literature review summarises and evaluates the current empirical evidence to establish whether interventions which aim to increase social interaction can improve cognition in older adults. Secondly, a qualitative study aims to develop a grounded theory of the concept of resilience in people diagnosed with mild to moderate dementia. Methods: For the systematic review, a comprehensive list of electronic databases was systematically searched, relevant authors in the field were contacted and a hand search of relevant journals was conducted. For the qualitative study, seven semi-structured interviews were conducted with people diagnosed with dementia, with a social constructivist version of grounded theory informing the collection and analysis of data. Results: 17 studies met eligibility criteria for the systematic review, mostly of moderate quality. Study heterogeneity and methodological variability made it difficult to determine the specific contribution of social interaction to cognitive improvements. There was, however, tentative support for improvement in semantic fluency. The results of the qualitative study propose a model which hypothesises resilience is a process of ‘overcoming dementia’. For participants this meant maintaining a sense of pre- and post-diagnostic continuity which was achieved through a complex interaction of their approach to life and acceptance of dementia in conjunction with spousal and other social support. Conclusions: Although the systematic review found some evidence increased social interaction can improve cognition in older adults, this finding is tentative and should be interpreted with caution, with further research warranted. The qualitative study proposes a model of resilience which explains the process of ‘overcoming dementia’. Resilience is conceptualised as comprising individual, social, community, societal and cultural aspects and opens up the possibility of promoting resilience in people with dementia through the development of psychosocial interventions. This study emphasises the strengths and abilities of people with dementia, as well as the importance of social support, but most importantly it is from the perspective of the person with dementia.

Background: Dementia, which affects an estimated 35 million individuals worldwide, is now recognised as a growing health and economic problem. With insufficient levels of health and welfare services in many nations, there exists a reliance on family caregivers to provide care for individuals with dementia (IWDs). However, the potential negative psychological and physical consequences of the caregiving role cannot be ignored. A growing literature base has improved the theoretical understanding of mental health difficulties (e.g. depression, burden) in caregivers. However, significant gaps in the research remain. These include understanding outcomes such as caregiver anxiety and examining the role of potentially crucial variables, such as levels of suffering and empathy. Objectives: An empirical study was conducted in order to add to the literature regarding depression and anxiety in spousal caregivers of IWDs. This research conducted exploratory analyses of the relationships between the suffering of IWDs, IWDs' depression and anxiety, caregivers' levels of empathy, caregiver satisfaction and caregiver anxiety and depression. Caregivers' anxiety and depression is considered in the context of research on co-morbidity. In addition, the levels of discrepancy between ratings of suffering, whereby caregivers frequently report IWDs to be suffering more than IWDs self-report, were also examined. A systematic review was conducted in order to evaluate the effectiveness of psychosocial interventions for anxiety in informal caregivers of IWDs. Method: For the empirical study, a cross-sectional survey methodology was employed where dyads of caregivers and IWDs completed questionnaires during face-to-face interviews. Primary variables examined were the suffering of IWDs, IWDs' levels of depression and anxiety, and caregivers' levels of empathy, satisfaction, depression and anxiety. The suffering of IWDs was rated both by the IWDs (self-reported suffering) and the caregivers (perceived suffering). Descriptive statistics and exploratory correlational analyses were used to address a number of exploratory research questions regarding the relationships between the investigated variables. For the systematic review, five scientific databases were searched for relevant randomised controlled trials (RCT). Study quality was assessed according to standardised, recommended criteria and a qualitative synthesis of the evidence, including effect sizes, is described. Results Results from the empirical study suggest high levels of clinical anxiety in the caregiver population. In the current sample, there was a high prevalence rate of anxiety (52.5%) and a lower rate of depression (15.0%). However, there were no statistically significant correlates for caregiver anxiety and depression found. Findings are discussed in the context of previous research, the demographics of the current sample and difficulties with recruitment. For the systematic review, twenty studies with substantially different methodological quality were included. Anxiety was rarely identified as the primary outcome measure. However, the evidence suggests that Cognitive Behavioural skills training and psycho-educational interventions can be effective in treating caregiver anxiety. Some preliminary evidence for interventions underpinned by Mindfulness-based strategies was also found. Conclusions: The empirical study found that a large proportion of Scottish spousal caregivers experience clinical levels of anxiety. This suggests that caregiver anxiety must be a key priority for both clinicians and researchers alike. In addition, further research examining these understudied variables and using dyadic methods remains crucial to increasing understanding into caregivers' outcomes. The systematic review demonstrated that research regarding interventions for anxiety in caregivers is growing and there is now a greater emphasis on the underlying theoretical models of delivered interventions. There is also growing evidence that interventions with clear theoretical basis may be more likely to be effective. However, both the empirical study and the systematic review highlight further questions that remain to be addressed in the literature. Further research continues to be necessary in this area to ensure that services are appropriately meeting the needs of both caregivers and IWDs.

Dementia is a growing problem with prevalence rapidly increasing. It is a progressive and eventually severe disease that affects many areas of the person’s life. Often, as a result of this disease, individuals reside in care homes. Care staff can find it difficult to get to know a person with dementia as they have limited time to spend with each person. In addition, communication difficulties can make it difficult to learn important social information and preferences. This lack of knowledge about an individual with dementia can make social interactions very difficult and can often contribute to repetitive social interactions. This research aimed to establish if technology could be used to support care staff within their care environment to get to know people with late-stage dementia. The goal was to develop software that can act as an external communication bridge between carers and people with dementia through the creation of simple but effective ‘Portraits’. This thesis investigates the creation and use of multimedia ‘Portraits’ of individuals with dementia that are immediately and easily accessible to care staff. This thesis describes the development of a software tool called Portrait, designed to help staff in care homes quickly get to know a person with dementia as a person. It is intended to be used by the staff in their care environment to gain an initial understanding of that person’s life prior to entering care and to learn more personal information about their needs and habits. The Portrait system contains important but limited personal and social information about the people with dementia. Five key studies were conducted during this research. The first study evaluated the usability of the Portrait system. The second and third were conducted with care managers and staff in the care home setting to assess usefulness and usability of the Portrait system and to compare it to current methods used in the care home environment. The fourth study conducted case studies with families of people with dementia to investigate the Portrait creation process and the final study investigated the placement of these Portraits in the care environment. The results of this research are promising, with Portrait being very positively received by care managers, care staff and the families of people with dementia. This research highlights the potential benefits of technology in the care environment to assist care staff. A number of key areas for future research have been identified including the possibility of expanding the use of the system and using alternative state of the art devices.

Behavioral and psychological symptoms of dementia create challenges for those living with neurodegenerative cognitive impairment and their care partners. Pharmacological approaches for treatment of challenging behaviors seen in dementia have limited success and serious side effects. Because of this, nonpharmacological approaches are being investigated with increasing frequency. Of particular interest are nonpharmacological approaches involving environmental stimulation to change behaviors. Success of such approaches relies on sensory processing systems, personal preferences, and environmental congruence. There is limited evidence describing behaviors of persons with cognitive impairment in relation to these components. Currently, there is no guiding model for implementation of environmental and sensory-based strategies with this population. The overall goal of this project is to elaborate on an emerging model describing the relationship among environment, behavior, sensation, and cognitive impairment for community-dwelling adults with mild cognitive impairment or dementia. Three studies allow for deeper understanding of this relationship. Study one compared behaviors seen in autism spectrum disorder (ASD) with exhibited behaviors of individuals with mild cognitive impairment or dementia. Of neurological conditions similar to dementia, ASD has been chosen as an exemplar for comparison of behavioral expression because evidence supports sensory-based theory and interventions to improve behaviors for those with ASD. Results indicate that ASD behaviors are reported in those assessed, with highest rates of behaviors in those with young age of onset and advanced cognitive impairment severity. Study two described presentation of behavior, sensory processing, and environment for community-dwelling adults with cognitive impairment in the context of the caregiver situation. Findings reflect dyadic experiences for the person with cognitive impairment and the primary care partner. Emergent themes included consideration of the passage of time, environmental contexts, behavioral adjustments while aging, and overall influences of living with cognitive impairment. Sensory processing assessment using the Adult Sensory Profile identified that all participants had some atypical sensory processing patterns, highlighting a need for attention to environmental congruence to promote adaptive behaviors. Using data collected in study one and study two, a model was created describing interactions among the person with cognitive impairment, sensation, and the environment as these interactions evolve over time. Areas for future research are conceptualized for implementation of the model. Future research is needed for assessment of the model to test for validity and reliability. Creation of an instrument is needed to place individuals within the model given their behavior and cognitive impairment progression. And, future research is needed to create and test interventions in order to aid in environmental congruence. Long-term goals are to improve care for adults with cognitive impairment and dementia via environmental interventions.