Dissertations / Theses on the topic 'Dementia carers'
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Davies, Catherine. "The psychological wellbeing of carers of people with dementia : what role does knowledge play on carers' perception of dementia?" Thesis, Bangor University, 2008. https://research.bangor.ac.uk/portal/en/theses/the-psychological-wellbeing-of-carers-of-people-with-dementia-what-role-does-knowledge-play-on-carers-perception-of-dementia(c62b4a14-048a-4b83-983e-5e308f0350e5).html.
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The following two papers focus on the psychological wellbeing of carers of people with dementia. The aim of the review paper was to gain an understanding of the barriers that British South Asian carers (BSAC) experience in accessing services. A review of past studies revealed several themes emerging from the literature and these included: limitations in health professionals' culture competence and linguistic abilities, a lack of dementia knowledge by South Asian carers, their perception of dementia and associated stigma. A model is proposed integrating these factors leading to a discussion of the implications of supporting and providing interventions for BSAC. The empirical paper focuses on the relationship between carers' knowledge of dementia, anxiety, preferred coping style (monitoring or blunting information) and competence levels. This questionnaire-based study recruited 51 participants from local health services and voluntary organisations. The results indicated a significant negative association between biomedical knowledge and anxiety, although this should be interpreted with caution due to a low Cronbach's a Coefficient (.54) on the biomedical subscale. A further significant association was found between knowledge and age of carer. Anxiety and competence amongst younger carers was significantly negatively correlated, however there was no association between these two variables in older carers. These findings suggest that the perception and understanding of dementia may have changed over recent years, especially amongst younger carers, with positive implications in terms of carers' psychological wellbeing. Although knowledge about dementia appears to have positive implications in terms of (younger) carers' psychological well-being, when providing support and interventions health professionals should not ignore the emotional aspects of caring for a person with dementia.
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Ablitt, Astri Julie. "Relationships between people with dementia and their carers." Thesis, University of Warwick, 2008. http://wrap.warwick.ac.uk/4111/.
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This thesis consists of three papers, a literature review, an empirical paper and a reflective paper. The literature review covers two distinct but interlinked areas of research: the impact of dementia on the quality of relationships, and the impact of relationship quality on the experience of living with dementia. The literature review clarifies the interactions between these factors by using a model to demonstrate the influence of relationship factors on the experience of living with dementia. Methodological issues and suggestions for future research are discussed, and the findings are summarized with particular reference to clinical implications. The empirical paper reports on a study of the awareness of carer distress in people with dementia. Ratings of carer psychological health were elicited from people with dementia and from the carers themselves as a pair. Comparison of the ratings showed that people with dementia are aware of their carers' psychological health. A control group of people with arthritis also participated in the study. The level of awareness shown by the participants with dementia was comparable to the level of awareness of carer psychological health shown by the control group. The level of awareness of carer psychological health in the participants with dementia was not related to their level of awareness of their own memory difficulties. The thesis concludes with a reflective paper which focuses on observations made whilst conducting research interviews and recruiting participants through support groups. Reflections and learning drawn from these observations are discussed.
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Tomlinson, E. J. "Former carers' views on assisted dying in dementia." Thesis, University College London (University of London), 2013. http://discovery.ucl.ac.uk/1407695/.
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Overview This volume is in three sections. Part 1: The literature review examines the available research into the views of the general public, health professionals, people with dementia and carers towards assisted dying in cases of dementia. It considers the evidence for factors associated with people’s views. Seventeen studies of variable quality met the criteria for the review. Health professionals appear to hold the most restrictive views on assisted dying; however opinions within each population group are divided and associated with factors such as age, ethnicity, gender and religion. The methodological limitations of the reviewed studies are discussed and recommendations are made for further research. Part 2: The empirical paper reports on an exploratory qualitative study of former carers’ views on assisted dying in cases of dementia. Semi-structured interviews were conducted with 16 former carers; transcripts were analysed thematically. Whilst support for the right to die with dementia was common, the complexity of assisted dying in cases of dementia was also acknowledged. The motivating factors for and against an assisted death are revealed and former carers’ views about talking with a health professional if contemplating an assisted death are described. Part 3: The critical appraisal is a reflection on the process of designing and executing the research presented in Part 2. It discusses some of the methodological issues which arose during the study before finally attending to the influence of the research on the researcher, which reference to personal reflexivity.
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Shlosberg, Emma. "Dementia : the burden of care on the carers." Thesis, Bangor University, 1998. https://research.bangor.ac.uk/portal/en/theses/dementia--the-burden-of-care-on-the-carers(3829ec44-fee0-4540-b783-6c78a327c567).html.
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Hinchliffe, Ann Catherine. "Management of behavioural difficulties in dementia sufferers and carers." Thesis, University College London (University of London), 2002. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.400580.
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Ash, Roisin. "Emotion regulation and positive growth in spousal dementia carers." Thesis, University of Edinburgh, 2014. http://hdl.handle.net/1842/9764.
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Background: Despite evidence that caring for a spouse or partner with dementia may continue over a number of years, our understanding of how the carer’s experience unfolds over time is still in its infancy. In addition, the emotional experience of spousal dementia carers has been incompletely understood in research and clinical practice with a predominant focus upon negative emotional consequences. There is a need to contextualise the emotional experience of carers within a framework that enables understanding of positive aspects of the care experience. Objective: This thesis is in two parts. Part one uses systematic review to critically evaluate evidence from published longitudinal studies that assess the impact of care transition (caring for spouse at home and placed spouse in care home) on the well-being of spousal dementia carers. Part two is an empirical study examining emotion regulation and positive growth in spouses who care for their partner with a diagnosis of dementia. Methods: Systematic review of longitudinal studies that assess the impact of care transition on spousal carer well-being. The empirical study comprised a cross-sectional design comparing positive growth and emotion regulation in three carer groups (caring for spouse at home, placed spouse in care home or experienced death of spouse). 183 carers were recruited through a postal survey which comprised the following self-report measures: Post Traumatic Growth Inventory; Basic Emotions Scale; and Regulation of Emotions Questionnaire. Systematic Review Results: Despite poorer psychological and physical well-being over time compared with non-carers, symptoms of depression, perceived burden and stress are stable over time for those who continue to care for their spouse at home. Mixed results are obtained for carer well-being when examining transition to permanent placement in care home and impede definitive conclusions. Empirical Study Results: Spousal carers report more frequent feelings of fear and frustration compared to other basic emotions. Gender and care transition impact upon the experience and regulation of emotion and positive growth. Internalising emotion regulation strategies (for example, rumination) are associated with greater fear and frustration, sadness and guilt while strategies comprising social support seeking are associated with feelings of happiness in carers. Spouses report positive growth since taking on the role of carer and this is predicted in part by social support seeking emotion regulation strategies but not by experience of emotions. Conclusions: Spousal carers are not a homogenous group. Further research on the experience of spousal dementia carers is required. This should include the development of tools and methods tailored to capture emotion regulation. The concept of positive growth following stressful events (for example, becoming a carer) may have potential for presenting an enriched understanding of the emotional consequences of the carer experience over time.
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Cunliffe, Louise. "Stress inoculation training for carers of people with dementia." Thesis, Bangor University, 2001. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.636487.
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Simpson, Rosemary G. "Carer held records : empowerment of carers of patients with dementia living in the community." Thesis, University of Leicester, 2003. http://hdl.handle.net/2381/31186.
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Recognition that family carers have valid personal knowledge of their relatives with dementia is very important when tailoring care packages to individual needs (Kitwood & Bredin 1992). Carers' well being is also essential for the continued management of patients in the community. A carer held record was designed to be kept at home by carers, in which carers might contribute to care plans for their relatives with dementia, alongside all involved professional disciplines and agencies, and be recognised as equal partners with professionals in providing the best possible care. A pilot study was conducted in 1996 the results of which informed the follow up definitive research (Simpson 1996) Aim To establish whether there are measurable benefits for carers who hold these multidisciplinary records in the areas of health, stress, knowledge of the illness and control. Methodology This is a longitudinal study with a subject group of carers who hold a carer held record, and a comparison group who do not. Questionnaires were completed by both groups at four time intervals over an eighteen month period. Outcome measures concern carers' stress and strain levels, physical and mental health, perceived burden, locus of control, and dementia knowledge, as well as their relatives' cognitive decline. Results Repeated measures ANOVAS for all outcome elements were used in data analysis. Qualitative analysis of use of the carer held record is included in the results. No significant differences were found on the Burden Scale or the aspects of carer stress selected for this study from the Carer Stress Scale (Pearlin et al, 1990). No significant health gains were found. However, subjects have been shown to have significantly lower scores on the Carer Strain Index (Robinson 1983) than controls, and significant changes were highlighted for subjects in aspects of locus of control.
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Heal, Harriet C. "The diagnosis of dementia - do we tell the sufferer, and why?" Thesis, University of East Anglia, 1996. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.320836.
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Harrison, Dening K. "Advance care planning in dementia : understanding the preferences of people with dementia and their carers." Thesis, University College London (University of London), 2014. http://discovery.ucl.ac.uk/1457800/.
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The UK End of Life Care Strategy proposed that all people should identify preferences for end of life care. Aims To explore whether family carers of a person with dementia (PWD) can accurately predict their preferences for end of life care and what factors influence this. Methods: This mixed methods study began with nominal groups to explore if PWD and carers could generate and prioritise preferences for end of life care and how much carers influenced the PWD’s choices. The second phase involved 60 dyad interviews using a modified Life Support Preferences Questionnaire to assess whether carers of PWD could predict the PWD’s preferences for treatment in three health states. The influence of carer burden and distress, and relationship quality, on a carer’s ability to predict the PWD’s treatment preferences were measured. This was examined further by qualitative interviews to provide personal contexts to decision making. Results: In nominal groups, PWD found it difficult to conceive of their future selves and think about preferences for end of life care. Carers’ views were influenced by their experiences of caring and negative media coverage of dementia and, when together, carers tended to override the PWD’s views. In interviews, carers could predict the PWD’s preferences in the here-and-now but were less accurate in future hypothetical health states. PWD and carers showed marked uncertainty about end of life treatment choices. Relationship quality, carer distress and burden had no influence on accuracy of prediction. Qualitative interviews revealed that while dyads claimed to have a shared decision making approach, joint healthcare decision making had largely been untested. Conclusions: Families affected by dementia require practical and emotional support at the outset to enable them adapt to changes in usual patterns of decision making, prepare for changes ahead and ensure, where possible, that the PWD’s preferences are upheld.
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Jayalath, Dilini. "Reverse journey in dementia : a clinician's research journey leading to the development of carers' diaries." Thesis, University of Hertfordshire, 2017. http://hdl.handle.net/2299/17475.
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Dementia is a progressively debilitating disorder often of insidious onset. When making the initial assessment or reviewing ongoing care of patients living at home, healthcare professionals rely on verbal information provided by person with dementia and their informal carers. Diaries have been used in very few instances to assist with gathering information about persons with dementia in the community. The review of literature found that there are very few studies that used carers' diaries in the context of dementia care and its effects on carers and patients, and there was no previous study that had used carer diaries in the assessment of dementia patients' problems in everyday life. It was also noted that no previous study has assessed the validity of these retrospective self-reporting by patients with dementia and their carers. If these self-reports are indeed unreliable and provide averaged impressions rather than actual fluctuations of frequency and magnitude of symptoms, then caregivers' diaries of these symptoms/problems can provide important and valuable additional information to clinicians. The main aim of this study was to capture a variety of problems (cognitive, emotional, behavioural, etc.) in people with dementia, using diaries kept by carers for a week and comparing with carers' oral recollection of problems in the same week. The second aim was to examine the potential therapeutic impact that keeping a diary had on carers' quality of life as rated by the EuroQol, emotional wellbeing as rated by the Hospital Anxiety and Depression scale, as well as its impact on behavioural and psychological problems of dementia patients measured by the Neuro-Psychiatry Inventory. Method Carers were randomly allocated into two groups, the intervention and control groups. In the intervention group, carers received a diary and instructions on how to complete it for 7 days. A number of assessment tools and ratings scales were completed on Day 1 and Day 8. The control group carried out the same tasks except completing a diary. The scales used were questionnaires such as the Clinical Dementia Rating Scale and the Neuro-Psychiatry Inventory for carers to evaluate the problems in the person they cared for. The EuroQol and Hospital Anxiety and Depression scale were completed by carers to assess their own quality of life and screen for anxiety and depression in carers. The carers in the diary group were asked to complete a semi-structured questionnaire on their views about keeping a diary on Day 8 when they returned the diary to the researchers. On Day 28, carers in each group completed the Neuropsychiatry Inventory, EuroQol, Hospital Anxiety and Depression Scale and a semi-structured questionnaire asking about their experiences taking part in the study. Results There was a 1 year period of recruitment from 1 May 2014 to 30 April 2015. A total of 97 couples were identified and approached to take part in the study, with 84 couples agreeing and giving written informed consent to take part. Out of these, 78 couples went on to complete the study and 6 couples withdrew. The problems reported in narratives and diary entries were content analysed by two raters independently and classed into 5 categories: cognitive, behavioural, emotional, psychiatric and other. In retrospective narrative accounts, significantly more cognitive problems were reported than any of the other four problems. In contrast, in diaries both cognitive and behavioural problems were reported significantly more often than the other problems. In addition, in the diary condition, the mean number of problems identified in the carers' diaries was significantly higher than in the carers' narrative accounts on Day 1 and Day 8. Furthermore, the number of problems recorded in diaries did not correlate with retrospective problems reported on Day 1 but correlated with the number of narrative problems on Day 8. In terms of therapeutic benefits of diary keeping, there were no significant differences between diary and control groups' mean scores in the Neuro Psychiatry Inventory, EuroQol and Hospital Anxiety and Depression Scale on Day 8. The mean Neuro-Psychiatry Inventory and Carer Distress scores were significantly lower at the end of the study for both the diary and control groups. Discussion The findings revealed that the carers' diaries identified a greater frequency of problems compared to retrospective information gathered from carers, with cognitive and behaviour problems being the two most common problems. Despite identifying more problems, the use of the carers' diaries in dementia did not appear to make a difference in carers in terms of carer distress, carers' health related quality of life or psychiatric morbidity amongst carers. This may be on account of the short period of one week that the diaries were used in this study. The positive correlation of problems identified in the narratives in diary group at Day 8 with diary entries in contrast to narratives at Day 1 where there were no correlation with diary entries suggest diary entries can enhance recollection of problems in narratives of carers who keep diaries. Conclusions Carers' diaries may be a useful tool in assessments of dementia patients as this study indicates that they may provide more information than obtained from a retrospective account of problems in persons with dementia. More research using diaries in dementia covering longer period than a week may be required to ascertain other benefits such as improving carers' well-being and problems in persons with dementia.
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Keady, John David. "The dynamics of dementia : a modified grounded theory study." Thesis, Bangor University, 1999. https://research.bangor.ac.uk/portal/en/theses/the-dynamics-of-dementia--a-modified-grounded-theory-study(88bebabb-f361-40f3-8bf1-3a19f49c4a77).html.
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This thesis explores the experience of dementia as recounted by family carers and people with the early experience of dementia. Between October, 1992 and May, 1996 sixty four semi-structured interviews were conducted with family carers of people with dementia using a modified grounded theory approach. Constant comparative analysis of the data led to the emergence of a five stage integrated scheme to explain their experiences, namely: Recognising the Need (1); Taking it On (2); Working Through It (3); Reaching the End (4); and A New Beginning (5), with critical junctures attached to each stage which either locked the carer in, or moved the carer through, the model. A second phase of data collection comprised eleven interviews with ten people with the early experience of dementia and their family carers. Analysis of these data resulted in the emergence of the stage of Keeping it Hidden with its supporting strategies: Closing Down; Regrouping; and Covering your Tracks which help to explain how people with early dementia manage their changing cognitive abilities. Following a theoretical integration of the two phases of data collection the process of 'working' emerged in three forms, i.e. Working Apart; Working Together; and Working Alone to explain movement between the above two models. Transcending the data, the study also generated the linking scheme of Maintaining Involvement to help explain the dynamics of dementia. The 'fit and grab' of this linking scheme was subjected to preliminary empirical scrutiny via a third series of interviews with six carers of people with dementia. It is suggested that the grounded theory emerging from this study helps to explain the shared experience of dementia, while also having implications for policy and practice which are briefly explored in the concluding chapter, together with some of the methodological implications and limitations of the study.
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Lockeridge, Shirley Ann. "The experience of carers of people with young onset dementia." Thesis, Lancaster University, 2010. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.551650.
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The experience of carers of people with young onset dementia has not received much empirical attention, despite increasing recognition that younger carers' experience may be different from that of older carers. The current thesis thereby begins with a narrative review of the literature that argues that an emphasis on the needs of younger carers for services has neglected to consider their psychological needs. The review first considers ways in which dementia is perceived to be different for younger people and their carers and why this has then led to the development of specialist services. However, it is then argued, with illustrative examples, that the provision of specialist services does not meet younger carers' need for psychological support. The review then considers the emotional impact of younger carers' experiences and attempts to elucidate their coping strategies. The review concludes that younger carers' subjective experience and coping strategies may be different from those of older carers. The broader implications for the development of services are discussed and recommendations made for future research. Subsequently, in an attempt to address the need for a focused and detailed exploration of the experience and coping strategies adopted by younger carers, a qualitative study, using interpretative phenomenological analysis, was undertaken with six partners of people with young onset dementia. Four themes are critically discussed that related to younger carers' coping strategies and their implications for clinical practice are considered. The thesis concludes with a critical reflection on the research process. This includes further discussion of the research findings and of the methodological, practical and process issues encountered during the research. The significance of the research findings in relation to the development of guidelines and interventions for carers of peopTe with young onset dementia are considered. Recommendations are also made for clinical practice and future research.
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Husemann, M. "'Nobody really understands' - dementia and the world of family carers." Thesis, University of Sheffield, 1999. https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.749021.
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Dean, David G. "Mediators of depression in secondary carers of a spouse with dementia." Thesis, Bangor University, 1994. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.239968.
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Rigg, Zoe M. "Exploring the emotional impact and adjustment in frontotemporal dementia family carers." Thesis, Canterbury Christ Church University, 2016. http://create.canterbury.ac.uk/15160/.
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Behavioural variant frontotemporal dementia (bv-FTD) is a rare form of the condition which manifests in personality and behavioural changes. Literature has indicated that this is a particularly challenging condition for family carers. Research has begun to explore the qualitative experiences of this group of carers, but is limited to date. The current study aimed to further explore these experiences with an emphasis on how these carers learn to adjust and accept their situation. Grounded theory methodology was adopted to analyse semi-structured interviews with 12 spousal carers (2 were male). A theoretical model is proposed to describe the carer journey and cyclical adjustment process within the progressive context of bv-FTD. This model implies that early stages in the process, including pre-investigation, as well as a number of mediating factors, including the carer’s own past experiences, influence the adjustment process. There is a continuous cycle of adjustment for these carers. These findings add to the existing research base by considering different stages of the adjustment process and linking themes together for a better understanding of the experiences.
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Chung, Pat Yin Fan. "Activity engagement with people with dementia at home : family carers' perspectives." Thesis, University of Southampton, 2009. https://eprints.soton.ac.uk/163873/.
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Government policies currently emphasise the need to support those with dementia at home, and family carers are increasingly advised to engage their relative in daily activities. Knowledge about family carers involvement in the activity needs of individuals living with dementia is fragmented. This study explored carers' decision making related to their engagement with their relative in everyday activities at home. Following research governance and ethical approval, 30 in-depth interviews (initial and follow-up) were carried out with 15 resident-carers who were recruited via local community mental health teams. Then five focus groups were conducted through carer support groups. The majority of carers were spouses, three were daughters and one a female friend. Both the interviews and focus groups explored the experiences of involving relatives in daily activities and highlighted the carers' strategies, feelings and reflections. Themes were identified which formed a temporal model consisting of five activity patterns. These were the usual, recognisable, illogical, irresponsible and dispossessed patterns. The model illustrated the complexity and long-term nature of family carers activity-related decisions. Over the passage of time carers attempted to recapture the past self of their relative through engaging them in beneficial activity. The findings provided deeper insight in the understanding of the processes by which carers negotiated strategies; and how such processes challenged the carers' own sense of self. The model offers a new approach for occupational therapists and other healthcare professionals to guide home-based activity programmes in which carers' perspectives are taken into account. Practitioners could gain a more complete understanding of the caregiving situation, so that they can, more effectively, support the family member and hence the person with dementia more effectively. Further research will focus on developing a toolkit to enable practitioners to recognise the complexities, uncertainties and conflicting values which confront carers in their decision-making and so enhance partnership working.
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Brooks, Alice. "A narrative enquiry of experienced family carers of people with dementia volunteering in a carer supporter programme." Thesis, Royal Holloway, University of London, 2011. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.588521.
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Peer support involves matching people in need of support with volunteers who have been in a similar situation. Whilst motivations and positive and negative aspects of general volunteering have been noted in the literature, little is known about the impact of providing peer support in the context of personal experiences of caring for someone with dementia. The aim of this study was to use rich, detailed case studies to build narratives of the impact of being a carer supporter. Participants were experienced carers of a person with dementia (either current or former), matched in a programme with newer dementia carers for a ten month period. The aim of the programme was to improve a sense of self-efficacy and competence in the newer carer through encouragement and positive reinforcement of carer skills development and carer network building activities. Eight carer supporters from two London Boroughs took part m semi-structured interviews. These were subject to a narrative analysis, focusing on structural components of the narratives, themes, and the influence of the wider socio-cultural context.
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O'Rourke, G., C. Pentecost, den Heuvel E. van, C. Victor, Catherine Quinn, A. Hillman, R. Litherland, and L. Clare. "Living with dementia during the COVID-19 pandemic: coping and support needs of community-dwelling people with dementia and their family carers. Research findings from the IDEAL COVID-19 Dementia Initiative (IDEAL-CDI)." Older People and Frailty Policy Research Group, 2021. http://hdl.handle.net/10454/18452.
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YesWe interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of respite. Some were concerned about the complex health needs of the person with dementia alongside COVID-19 risk and lack of personalised information. Both people with dementia and carers talked about the importance of access to safe outdoor space. People were anxious about how others would react or behave towards them regarding keeping a distance if they went out. Being connected to friends, family and wider community or support groups was important to help combat the effects of isolation. People from BAME communities worried about their increased vulnerability to the virus. A lack of trust in Government guidance and in health care services added to their anxiety. However, some benefitted from strong community and faith group involvement. What might be helpful for people with dementia? • Reablement to help regain or maintain skills • Personalised health advice regarding managing COVID-19 risk and the opportunity to ask questions. • Identification of people with dementia who live alone and an assessment of their needs. What might be helpful for carers? • Needs assessment in regard to respite. • Novel forms of respite care that incorporate social distancing. What might be helpful for both carers and people with dementia? • Access to COVID-safe outdoor spaces. • Continuation and expansion of ‘just checking’ services. • Support to get online and use the internet. • Communication and information through non-digital means. • Community COVID-19 ‘dementia awareness’ initiatives. What might be helpful for people from Black and minority ethnic groups? • Addressing concerns about their increased risk of COVID-19. • Directing information and support through existing community and faith groups.
This report presents independent research funded by the National Institute for Health Research Policy Research Unit in Older People and Frailty.
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Jacobs, Anne. "Employment and coping strategies in carers of people with young onset dementia." Thesis, Royal Holloway, University of London, 2013. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.604559.
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Background and objectives Research into carers of people with young onset dementia (YOD) has highlighted that carers may experience more distress than late onset dementia (LOD) carers (e.g. Freyne, Kidd, Coen & Lawlor, 1999), and have specific needs which differ from those of LOO carers (e.g. Svanberg, Spectar & Slott, 2011). Difficulties with employment has been raised as a particular issue for this population (e.g. van Vliet, de Vugt, Bakker, Koopmans & Verhey, 2010), yet no qualitative study has examined the factors influencing carers' experience of employment. This study aimed to explore such factors and how these impact on carers' ability to cope with their caring roles. Method A qualitative grounded theory approach was used to study the experiences of employment using in-depth semi-structured interviews. Ten YOD carers with experience of employment, who were living with, and caring for, someone who had been diagnosed with dementia before the age of 65, were recruited through carer support groups using purposive sampling. Results Nine theoretical categories were identified, including: dealing with the challenges of the caring role, appraisal, attributing responsibility, support, benefitting from working, transferring work skills, mutual interference of work and home, needing flexibility to continue working and being motivated to seek work. by a need for space and identity. Conclusions These findings expand current theoretical knowledge of how YOD carers may manage employment alongside their caring role. Findings suggest carers may experience employment as personally beneficial, and that it may directly and indirectly influence their ability to cope with their caring role. YOD carers' vocational needs, and their coping resources may need to be explicitly addressed in clinical assessments, and explored and incorporated into psychological interventions. Further research is warranted to validate the findings empirically with a larger sample of YOD carers.
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Spink, Jenna-Lorin. "Exploring the role of social relationships for carers of people with dementia." Thesis, University of Warwick, 2016. http://wrap.warwick.ac.uk/88080/.
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Informal carers are pertinent in supporting people with dementia. The impact of a diagnosis impacts on the person with dementia, their carers and their social relationship. Caring can be influenced by wider social relationships, the present thesis sought to explore the role of social support within the context of dementia. Chapter 1 presents a qualitative systematic review of the literature exploring dementia carers' experiences of online support groups. It explores how social relationships with others in a similar situation, over the internet, can support carers with the caring role. The main themes that were drawn out from the studies reviewed were group bonding, emotional support and information gathering, as well as carer perceptions of the unique advantages and disadvantages of online support groups. A critical analysis highlighted methodological limitations with regards to the clarity of the results. Clinical implications and suggestions for future research are also discussed. Chapter 2 presents a qualitative investigation exploring the construction of identity in carers of people with dementia when interacting in a face-to-face social support group. The study considers the impact of a diagnosis of dementia on carer identity within social relationships and the analysis focusses on the construction of identities within the social context of a support group. The analysis revealed the construction of a group identity that occurs when carers align with the group. The action of this identity is discussed, along with the clinical implications and future research directions. Chapter 3 puts forward my reflective account of the research experience in relation to the construction of my own identities in social relationships.
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Foster, Angela. "The experience of carers of people with Down Syndrome who develop dementia." Thesis, University of Birmingham, 2012. http://etheses.bham.ac.uk//id/eprint/3930/.
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The literature review draws on research relating to diagnoses of, and living with, learning disability and dementia and draws out the implications for having a relative with both Down syndrome and dementia. The review demonstrates that more research is needed into the experiences of people who care for adults with Down syndrome and dementia. The qualitative study explores family member and professional carer perspectives on caring for adults with Down syndrome and dementia. Data was analysed using interpretative phenomenological analysis (IPA) looking at professional carer and family member experiences separately. For family members four themes emerged; dementia and understanding; emotional containment; relationships and difficulties endured. For professional carers four themes emerged; dementia meaning; containment; witnessing others suffering and person-centred. The themes were similar for both groups. The main difference was the emotional content. Family members were immersed in the experiences and it was a painful part of their lives, whereas staff carers talked about the experiences from an observer position. Possible reasons for this difference are discussed in terms of psychodynamic defences and attachment theory. The importance of emotional containment for both groups is also highlighted and how this can be developed further within service delivery to help prevent distress.
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McIntyre, Anne Elizabeth. "The experience of falling of older people with dementia and their carers." Thesis, Brunel University, 2012. http://bura.brunel.ac.uk/handle/2438/7247.
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Falling by older people is of significant global concern as the population ages, because of subsequent injury, disability, admission to long-term care and mortality. Older people experiencing dementia are twice as likely to fall with more severe consequences. Unsurprisingly, carer-burden increases when a care-recipient falls. Older people are rarely asked about their falls experiences and those with dementia less so. The studies presented in this thesis explore the experiences of falling of older people with dementia and memory problems, and their carers. The studies were informed by contextualism and the primary study used interpretative phenomenological analysis to explore the experiences of nine older people with dementia and their 10 carers, using one-to-one and joint interviews, and three focus groups with nine older people experiencing memory problems and 12 carers from a branch of the Alzheimer’s society. Analysis of the data considered the falls experience itself and the perceived consequences of falls within two higher level themes: ‘Falling as a malevolent force’ as two themes - ‘Going back to the experience’, ‘Reactions, responses and coming to terms with events’, and ‘Falling as the manifestation of dementia’ as two themes - ‘Self, identity and falling’, ‘The caring relationship’. The secondary study elaborated upon primary study data using an inductive interpretative approach unaligned to any tradition. Older people recently diagnosed with dementia and carers from another Alzheimer’s Society branch participated in two focus groups. Participants discussed stimulus cards with quotations from primary study participants. Thematic analysis suggested four major themes: Making sense of falls, The personal and social significance of falling, Falling, self and identity and Struggling to care. The findings demonstrate how falling and dementia are enmeshed and embodied experiences for participants. Spouse-carers’ discussion of their own falls emphasise the need for joint assessment and intervention to reduce carerburden and preserve couplehood.
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Tzimoula, X. M. "Social support and psychological health of family carers of people with dementia." Thesis, University College London (University of London), 2013. http://discovery.ucl.ac.uk/1418834/.
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The majority of people with dementia are cared by family members. Family caregivers of PwD are vulnerable to high levels of burden, depression and loneliness. Social support, as a coping resource, can play an important role in the stress process. However, levels of social support can be lower than needed, which may lead to the experience of loneliness. This study aims to examine the effects of social support on caregivers' psychological well-being and whether social support interacts with burden or mediates in the burden — psychological outcome relationship, both cross-sectionally and longitudinally. Furthermore, I examine predictors of loneliness in caregivers of PwD and in particular the relationship between loneliness and social support. Methods: 120 family caregivers of PwD living in the community were interviewed at baseline and 97 (>80%) were re- interviewed two years later. Recruitment took place in the UK counties of Norfolk and Suffolk, and the London Borough of Havering. I employed measures of depression, perceived emotional support, burden and loneliness with sound psychometric properties. Results: Social support was significantly associated with reduced depression both at baseline and follow-up. Social support also was suggested to mediate the burden — depression relationship at baseline, but did not appear to buffer the effects of burden on depression. Psychosocial variables of perceived support and loss of companionship were suggested to predict loneliness over and above the demographic variables. Furthermore, perceived social support did not significantly buffer the effects of loss of companionship on loneliness. Therefore, different aspects of loneliness may be experienced as a result of loss of supportive others or loss of an attachment figure. Conclusions: Social support is suggested to reduce the effects of burden on depression, irrespective of how burdened caregivers were. Social support also is suggested to reduce feelings of loneliness but not those of loss of a close relationship.
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O'Donovan, Simon Terence. "Dementia caregiving : burden and breakdown." Thesis, University of South Wales, 2004. https://pure.southwales.ac.uk/en/studentthesis/dementia-caregiving(34088905-f406-4d82-bc09-aeed052f5e3c).html.
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This study was an investigation of the phenomenon of dementia caregiving burden and breakdown in community caregiving situations. 109 carer subjects participated in the study, with 91 current carers - 17 via face-to-face interview and 74 via the internet, and 18 past carers - two via face-to-face interview and 16 via the internet, contributing their experiences of dementia caregiving. Two new carers' assessment tools were devised to meet more fully the requirements of the 'Carers (Recognition and Services) Act 1995' (DoH, 1995), namely the 'Dementia Caregiving Problems Questionnaire (DCPQ)' and 'Dementia Caregiving Burden Questionnaire (DCBQ)'. These new assessments were tested and demonstrated to be reliable, with Cronbach Alpha scores of 0.7029 and 0.8430 respectively, and are recommended for implementation in clinical practice. The key predictive risk factors for high caregiving burden in this study were perceived stress; omission of caregiving satisfactions; carer depression; perceived impact on quality of life; perceived helpfulness of community care services; behaviour problems - especially shouting, swearing and screaming, irritability and night disturbance; poor quality carer/dependant relationship; mood problems; perceived helpfulness of informal support; perceived impact of caregiving on dependant emotional well-being and, to a lesser extent, hours spent in caregiving. The key predictive risk factors for expected relinquishment of home caregiving were DCBQ score; perceived impact on quality of life; perceived stress; carer depression and, to a lesser extent, geographical distance in caregiving; perceived helpfulness of community care services and omission of positive feelings in the carer. Based on the above risk factors, a new 'Dementia Caregiving Breakdown Risk Assessment Tool (DCBRAT)' is proposed for use by community care managers to identify 'at risk' caregiving situations so that service interventions can be targetted more towards carers who are highly burdened in their role, who are at risk of developing psychological health problems or who may be nearing breakdown in their caregiving situation. Thus the effectiveness of service interventions may be maximised and optimal health gain for carers achieved, resulting in improved outcomes for people with dementia. The DCBRAT and the similarly proposed 'Conceptual Model of Dementia Caregiving, Burden and Breakdown' will need to be further tested in post-doctoral research.
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Harland, Juliet. "Making sense of dementia : exploring experiences of information need, seeking, sharing and use by people with dementia and their carers." Thesis, University of Sheffield, 2010. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.531111.
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McKechnie, I. V. "The impact of an online support forum for carers of people with dementia." Thesis, University College London (University of London), 2013. http://discovery.ucl.ac.uk/1410117/.
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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.
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Lee, Hyunsook. "Comparative study of carers of older people with dementia in Scotland and Korea." Thesis, University of Edinburgh, 2011. http://hdl.handle.net/1842/9796.
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This study aims to explore Scottish and Korean carers‘ attitudes towards the diagnosis of dementia in their relative, family care, community care and to residential care in Scotland and Korea respectively, also under examination was the origin of different carers‘ attitudes between Scotland and Korea. The dominant argument between previous Western and Eastern comparative studies on attitudes, has been that culture made the difference. In other words, the cultural factor was recognised as a main determinant of attitudes towards a diagnosis of dementia, towards social services at home and residential care in Asian societies, including Korea. This thesis starts with the question: Does culture really explain the phenomenon of Asian people‘s attitudes towards dementia? Indeed the tradition of filial piety has been changing and now seems to be rather weak in modern Asian society. In particular, contemporary Korea is modernised and westernised, as a result, many older people live apart from their adult children and their nuclear families. This study asserts that Confucianism is a much less significant factor than differences in social policy. In other words, this thesis focuses not on Confucianism, but on the impact of institutions on carers‘ attitudes towards dementia. Finally, this thesis explores this argument through the following research question: What are the origins of different carers‘ attitudes between Scotland and Korea? In order to develop this argument, this thesis has carried out interviews with 14 Scottish carers and 28 Korean carers; and adopted a qualitative approach that would yield a rich exploration and deeper understanding of the different attitudes between carers in Scotland and Korea. Based on this data, this thesis examines carers‘ attitudes towards the diagnosis of dementia (chapter 3), family care (chapter 4), community care (chapter 5), and residential care (chapter 6). Each chapter analyses similarities and differences in attitudes in Scotland and Korea from the point of view of culture or the social welfare system. To conclude, these findings explain that the origin of carers‘ attitudes in this study is based on social policy rather than culture. In other words, the Korean carers‘ attitudes and behaviours towards diagnosis and long-term care services are rooted in the residual welfare system rather than Confucianism. Likewise, this study found that Confucianism has a less significant influence than social policy on carers‘ attitudes towards the utilisation of health care, community care and residential care. Unlike previous studies on East Asia, that argue for a cultural explanation, this study of Korean carers demonstrates that the residual welfare system is more persuasive than the cultural approach derived from Confucianism . This study contributes to the comparative study of Scotland and Korea as well as being a qualitative study in Korea. In addition, it will provide a new perspective on attitudes towards studies on East Asia. Moreover, the study will suggest political implications through the exploration of the carers‘ attitudes towards dementia diagnosis, social services at home and residential care. It also can provide lessons on dementia and dementia care from different experiences in Scotland and Korea.
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Webster, Gemma. "Multimedia profiles as external personalities to support people with dementia and their carers." Thesis, University of Dundee, 2011. https://discovery.dundee.ac.uk/en/studentTheses/f68f7545-c3af-427d-b4fe-96633824208a.
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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.
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Whittick, Janice Elizabeth. "Carers of the dementing elderly coping techniques and expressed emotion /." Thesis, Connect to e-thesis, 1993. http://theses.gla.ac.uk/696/.
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Thesis (Ph.D.) - University of Glasgow, 1993.Thesis submitted to the Faculty of Medicine, Department of Division of Developmental Medicine, University of Glasgow, 1993. Includes bibliographical references. Print version also available.
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Lindh, Therese, and Anna Andersson. "Anhörigas upplevelser av att vårda en person med demenssjukdom. : En litteraturöversikt." Thesis, University of Skövde, School of Life Sciences, 2010. http://urn.kb.se/resolve?urn=urn:nbn:se:his:diva-3558.
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Bakgrund: Antalet personer med demenssjukdom i Sverige beräknas uppgå till 150 000. Utav dessa vårdas 55 procent i hemmet av anhöriga. De anhörigas roll och funktion som vårdare i hemmet blir alltmer centralt, då vård och omsorg flyttas från det offentliga rummet till det privata. Att träda in i rollen som anhörigvårdare förändrar livssituationen avsevärt och allt planeras kring demenssjukdomens villkor. Syfte: Att sammanställa och belysa forskning som beskriver hur de anhöriga upplever sin situation av att vårda en anhörig som drabbats av en demenssjukdom. Metod: En litteraturöversikt där fem kvantitativa och sex kvalitativa artiklar analyserats. Resultat: Artikelanalysen resulterade i tre teman: en ny livssituation, förändrad relation och känslomässigt påfrestande. I resultatet framkom att anhöriga rapporterade ohälsa. Diskussion: Anhöriga är en utsatt grupp, som behöver mycket stöd för att de ska orka axla rollen som anhörigvårdare. För att de ska kunna ge den demenssjuke god vård, krävs ett samarbete mellan den anhörige och vården. Kunskapen i studien är användbar för sjuksköterskan och kan användas som ett verktyg för ökad förståelse i mötet med den anhörige.
Background: The numbers of people with dementia in Sweden are estimates at 150 000. Out of these 55 percent cared for a relative at home. The role and function as a caregiver in home are becoming more centralized, when health care move from the public sphere to private enter the role of careers changing life situation considerably and everything is planned around the dementia illness. Aim: To collate and illustrate research that describes how the relative experiences their situation of caring for a relative with dementia. Method: A literature survey in which five quantitative and six qualitative articles were analyzed. Results: Article analysis resulted in three headings: a new life situation, changes in relationships and emotional trying. The results revealed that caregivers reported illness. Discussion: Relatives are a vulnerable group in need of much support to maintain the role as a caregiver. To be able to provide the best dementia care requires a coperation between caregivers and health care. Knowledge in the study is useful for the nurse and can be used as a tool for better understanding of the meeting with the relative.
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Carradice, Angela. "A qualitative study of the theoretical models used by mental health nurses to guide their assessments with family caregivers for people with dementia." Thesis, University of Sheffield, 1999. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.365112.
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Elson, Paul. "Breaking the news to carers that their relative suffers from dementia : an exploratory study." Thesis, Bangor University, 1995. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.318071.
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Adams, Trevor. "Developing partnerships between people with dementia, their informal family carers and community psychiatric nurses." Thesis, University of Surrey, 2001. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.390581.
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Moore, Charlotte Lucy. "The caring experience of staff carers working with adults with learning disability and dementia." Thesis, University of Hull, 2012. http://hydra.hull.ac.uk/resources/hull:6272.
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This Portfolio Thesis consists of three parts, the first being a Systematic Literature review entitled ‘A Systematic Review into the Factors that Affect the Experience of Residential Staff Caring for Adults with Learning Disability: a United Kingdom Perspective’; the second is an empirical paper entitled ‘The Caring Experience of Staff Carers Working with Adults with Learning Disability and Dementia’; and the final part is the Appendices. Part One: The Systematic Literature Review examines the factors that affect the experience of staff carers working with adults with learning disability within the United Kingdom, as reported by published research. A systematic search of the literature was conducted. Four databases were searched and 13 papers were found that met the inclusion and exclusion criteria that were set out by the researcher. The findings of these papers are set out within the review as well as a discussion of the limitations of these papers and the impact they may have on clinical practise. Part Two: The Empirical Paper reports the findings of a qualitative study into the experience of care staff working with individuals with both a learning disability and dementia. Interviews were conducted with nine participants and then interpretative phenomenological analysis was used to analyse the transcripts of these interviews. The themes identified during this analysis are discussed, along with how these themes link to previous studies, the clinical implications of the findings, the limitations of the study and future areas for research. Part Three: The Appendices contains additional information for the Systematic Literature Review and the Empirical Paper as well as a Reflective Statement.
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Duce, Louise Elizabeth. "The role of knowledge in anxiety and coping in carers of people with dementia." Thesis, University of Birmingham, 2002. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.269873.
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VOLUME 1 This volume comprises a review of the literature surrounding caring for family members with dementia and an empirical study investigating the impact of knowledge on carer burden and anxiety and also to investigate whether coping style affected the relationship between knowledge and anxiety or burden. The literature review examines the prevalence of dementia and the nature of the caregiving role. The theoretical basis for understanding the caregiving experience is considered and an overview of the extensive literature investigating emotional and physical health consequences to caregiving along with factors affecting caregiver stress is given. Furthermore, the information needs of carers and the effects of dementia knowledge on carer stress are considered and possible areas for further research are discussed. The empirical study aims to explore the impact of knowledge on carer burden and anxiety and also to investigate whether coping style affected the relationship between knowledge and anxiety or burden. Information about dementia is not always well delivered to caregivers despite the fact that a good grasp of knowledge is important for accurate appraisals. The possibility that increasing knowledge about dementia may increase carer anxiety needs to be investigated further. A cross-sectional, questionnaire-based design was used. Participants were 47 family caregivers of people with dementia living in the community. Pearson's correlations were used to examine the relationships between carers' knowledge of dementia, anxiety, strain and coping. Student's t-tests were used to compare levels of anxiety, carer strain and level of knowledge across demographic variables.No association between carer anxiety and knowledge were found. Use of avoidant coping strategies was positively correlated to carer anxiety and burden. Anxiety and burden were significantly correlated. Use of active behavioural coping was related to level of overall knowledge and is specifically related to biomedical knowledge of dementia The overall conclusions were that it is possible that the relationship between knowledge and carer outcomes does exist, but were not found due to methodological flaws in the main study. However, the predicted relationship between knowledge and carer outcomes may be more complex, insofar as, knowledge may inform carers' subjective interpretations of problem behaviours that have been consistently linked with carer distress. VOLUME ll Four Clinical Practice Reports (CPR) are presented in this volume. CPR 1 details the sleep problems of a 2 year old and formulates the difficulties from 3 different perspectives. CPR 2 describes a service evaluation of a self-esteem group. The obsessive compulsive symptoms of a 65 year old gentleman and the subsequent intervention is outlined in CPR3. CPR4 presents an anxiety management intervention for a man with moderate learning disabilities. An oral presentation was delivered for CPR 5 and an abstract is given.
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Parker, Ethna Therese. "Dementia is a disease, not a person : exploring the experiences of people with dementia, carers and mental health practitioners on dementia and dementia services via a qualitative evaluation of a community-based memory service." Thesis, Durham University, 2015. http://etheses.dur.ac.uk/10987/.
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This thesis presents a case-based qualitative evaluation of a community-based memory service for people with dementia and carers, informed by an advisory group including people with dementia and carers. Drawing on theoretical frameworks of critical and narrative gerontology, interviews with service users, carers and community mental health team staff generated rich accounts of experiences of using and delivering the memory service. Data from people with dementia and carers were analysed thematically and built on work by Willis et al. (2009) to generate quality indicators for dementia care. Analysis of data from CMHT staff drew on a framework of collective leadership devised for use in the NHS by the Center for Creative Leadership and The King's Fund (2014a). Findings reveal rich insights into: i) the everyday challenges faced by people with dementia and carers, ii) the positive contributions they can bring to the evaluation and development of services for people with dementia and carers and iii) the important role of collective leadership in the provision of high quality services for people with dementia. The thesis extends the current knowledge base relating to people with dementia and carers by developing particular understandings of how they can contribute to the evaluation and development of memory services.
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Banks, Sara. "An investigation into illness representations, coping and psychological adjustment in carers of people with dementia." Thesis, Lancaster University, 2003. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.418511.
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Smith, Raymond. "Investigating the impact of volunteer mentoring on carers of people with dementia and volunteer mentors." Thesis, Kingston University, 2015. http://eprints.kingston.ac.uk/34895/.
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Volunteer mentoring (befriending and peer support) is provided across a wide range of services for people with varying health conditions. Despite such services for carers of people with dementia increasing in number, there is little evidence for the benefits they may offer. Using a pragmatic approach, this thesis investigated the impact of volunteer mentoring on carers. It also explored the processes by which volunteer mentoring works and the experiences of volunteers delivering the interventions, many of whom are former carers. A systematic review and survey of volunteer mentoring services highlighted conflicting findings surrounding the impact of the services, the perceived importance of experiential similarity of volunteers and matching carers and volunteers. However, reported outcomes from the systematic review and survey were more consistent, namely reducing emotional distress, loneliness and social isolation of carers. To explore these issues in greater depth, a sequential explanatory mixed methods design was adopted. Data were collected from carers using validated rating scales (HADS, MSPSS and the UCLA Loneliness Scale) and semi-structured interviews. Data collection from volunteers was by semi-structured interviews only. No statistically significant changes were found after the six month study period for anxiety, depression or loneliness for carers. However, significant differences in perceived social support scores were found (p = 0.042). Post-hoc analysis showed this to be between baseline and three months follow-up (p = 0.015). Of the three subscales of the MSPSS, only support from a ‘significant other’ was shown to be statistically significant between baseline and three months (p = 0.013). Qualitative findings showed volunteer mentoring to be an important source of emotional and social support for carers, which was facilitated by the volunteers’ experiential similarity. Similarly to carers, volunteers reported the importance of experiential similarity in developing bonds with carers. They discussed the importance of developing mutually beneficial relationships which leads to a two-way flow of support. Volunteers also reported satisfaction and enjoyment from their roles. Data integration showed volunteer mentoring can be a source of social support for carers. The statistically significant difference in perceived social support from a ‘significant other’ between baseline, three months follow up, was confirmed by carers taking part in the qualitative phase. They perceived that volunteer mentoring can help them be networked into other services and help them to cope better with their caring role. It is argued that volunteer mentoring is an important source of support for some carers and that the development of these types of services should be considered alongside other forms of social support. This was one of the first studies of its kind to investigate both the process of volunteer mentoring and its impact specifically on carers of people with dementia. It is concluded that without experiential similarity, carers and volunteers may not develop the level of trust necessary to form mutually beneficial relationships.
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Smith, Stephen D. M. "An action research study of palliative care for people with a dementia and their carers." Thesis, Queen Margaret University, 2009. https://eresearch.qmu.ac.uk/handle/20.500.12289/7393.
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The objectives of this participatory action research were to: identify the palliative care needs of PWAD and their carers in West Lothian; analyse two dementia care services as they develop practice in the assessment and management of distress for PWAD, and supporting carers; determine implications for practice development and service delivery. Multiple data collection methods were used including; focus groups, interviews, participant observation, reflective accounts, case studies, documentation review, action learning and notes recorded from meetings with staff. The first phase was a dementia palliative care needs assessment. Eight PWAD, 25 carers and 63 service providers participated in interviews and focus groups. Overall findings were that a palliative care approach provided a useful and appropriate framework to understand the needs of PWAD. Recognition of and support for family carers should take a high priority when considering a model for dementia palliative care. More specific needs were identified, these included: the need to develop person centred approaches; enhance the management of pain and distress and enhance individual support for carers. Two services participated in the action phase; a day centre and a hospital ward. Eleven people with a dementia, 28 carers and 86 service providers participated. Services focused on carer support or assessing pain / distress. Carer support findings: implementing an assessment tool enhanced staffs understanding of carers needs; carers preferred flexible and individual support interventions; family carers experienced cumulative factors that restricted access to support. Assessment of distress findings: assessing distress from the behaviour of PWAD was complex. The implementation of the Disability Distress Assessment Tool (DisDAT) identified new evidence that it provided a person centred assessment suitable for PWAD. It was identified that the theoretical concept of relationship centred care, could provide a way of working, that complemented the adoption of a palliative care approach for PWAD, whilst enhancing carer support and assessment of distress practices.
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Du, Preez Janice. "Adult day services: experiences of occupational participation by people with early dementia and their carers." Thesis, Edith Cowan University, Research Online, Perth, Western Australia, 2019. https://ro.ecu.edu.au/theses/2186.
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Background issue:
Reduced opportunities for occupational participation by adults with dementia impact their quality of life and wellbeing. It also affects the health and wellbeing of carers with whom they live. Adult day services were identified as possibly providing opportunities for meaningful activity engagement. However, there is a paucity of research on the occupational participation needs of individuals with early stage dementia who use adult day services and their carers.
Aim and significance:
This study aimed to identify the occupational participation (engagement in everyday activities that are individually meaningful) experiences of people with early stage dementia and their primary carers, whilst in the home, and during adult day service attendance. Furthermore, this study explored how carers ’perceptions on any impact the adult day service attendance had upon the persons with early stage dementia. An important inclusion was the perspectives of people with dementia and recognition of the contribution they can make to research. Lastly, understanding how the occupational participation experiences of these two groups are affected by adult day service utilisation provided insights on how adult day services and related policies can enhance the health and wellbeing of people with early stage dementia and their carers. Understanding how changes in habits, roles and routines affect occupational participation experiences of these two populations in the home, and during adult day service attendance is fundamental to enabling successful ageing-in-place.
Method:
Qualitative research methods were selected as the most suitable and trustworthy approach to investigate the lived experiences and perceptions of vulnerable individuals with early stage dementia and their carers. Issues such as rigour and of transferability were addressed throughout the collection and interpretation of data. A semi-structured interview schedule was developed, drawing on the concepts in the Model of Human Occupation. A pilot study was conducted to pre-test the interview schedule and some adjustments were made. The final schedule was used in interviews conducted jointly with participants with dementia and their carers and individually, face-to-face with the primary carers. Interviews were conducted in a location of their choice, digitally (audio) recorded and transcribed verbatim. Field notes and an audit trail of procedures were maintained throughout.
Recruitment:
A purposive sample of 30 participants, comprising 15 community-dwelling individuals with early stage dementia and their carers (15), were recruited.
Materials:
Semi-structured joint and individual interviews, modelled on the theoretical framework of the Model of Human Occupation, were used with each of the 30 participants
Ethics:
Approval by the Edith Cowan University Human Research Ethics Committee was given. Research did not proceed prior to approval.
Analysis:
Analysis of the narrative data proceeded through an iterative approach that distilled data into themes.
Findings:
Findings from this study revealed that occupational participation that is, engaging in meaningful activities, during adult day service attendance positively impacts attendees by enhancing their sense of mastery, purpose and validation, and relieves their boredom. Attendees’ experiences were further enhanced by newly formed friendships with peers with whom they felt comfortable, understood and therefore safe. Carers perceived the benefits of adult day service attendance for attendees as providing opportunities for socialisation and that the co-operation social and built adult day service environment promoted attendee’s occupational participation. Whilst carers welcomed the respite adult day service attendance brings, they had to weigh the stressors of preparing their attendee for adult day service attendance against the benefits of respite time. An integrated model of service delivery and support for people with dementia, their primary carers and adult day services is proposed.
Conclusion:
Adult day services provide opportunities that encourage occupational participation and this contributes to enhanced wellbeing for people with early stage dementia. Recommendations for future research are given, and inter alia include a closer working nexus between the service recipients, service providers and policy makers. Research outcomes may inform recommendations for future programming in community-based adult day services.
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O'Reilly, Maria Therese. "Quality of life for carers of people with dementia : a comparison between rural and metropolitan samples /." [St. Lucia, Qld.], 2003. http://www.library.uq.edu.au/pdfserve.php?image=thesisabs/absthe17632.pdf.
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Logan, Caroline. "Caregiving to older people who have a dementia : an investigation of stress and coping in carers." Thesis, University of Oxford, 1995. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.306888.
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Davies, N. "Quality end of life care for people with dementia : the views and experiences of family carers." Thesis, University College London (University of London), 2014. http://discovery.ucl.ac.uk/1458549/.
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Background: Many have reported the difficulty of defining ‘quality’ with several concepts emerging to characterise quality end of life care. People with dementia have been described as the ‘disadvantaged dying’ with poor end of life care. Towards the end of life people with dementia cannot report on the care they receive. It is therefore important to talk to carers; however, few have explored the views about end of life care from the carers’ perspective. Aim: To explore the features of ‘good’ and ‘bad’ quality end of life care for people with dementia from the perspective of family carers. Method: 1) A systematic review of qualitative studies which explored family carers’ views of quality end of life care for people with dementia. 2) A qualitative study with 46 in-depth interviews with carers analysed using thematic analysis methods. Purposive sampling was used to recruit 1) family carers of someone who had recently received a diagnosis of dementia, 2) family carers currently caring for someone with dementia, and 3) bereaved family carers. Results: Many elements to ‘good’ care were identified including: tailoring care, attention to the individual, respect and dignity. Participants perceived some basic principles such as compassion were lacking, particularly from nurses. The finer details of care such as clothing and appearance were important manifestations of social identity and personhood. Care for the carer was also important, with carers often being left to act as a care manager and navigate the health and social care systems. Conclusion: At end of life not everyone with dementia will require input from specialist palliative care services; there are many basic principles to good quality end of life care. This study suggests that end of life care for someone with dementia may not be that different to dementia care in general.
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Di, Franco Melissa. "Exploring truth and deception as strategies used within everyday communication by carers towards people with dementia." Thesis, Staffordshire University, 2018. http://eprints.staffs.ac.uk/4902/.
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Paper one, the literature review, considered the use of truth and deception within the care of people with dementia. Nine papers were included within the review, which explored the experiences of professional carers, informal carers and people with dementia. The studies identified continuing dilemmas about the use of truth or deception strategies within dementia care, for instance, when truthful strategies were less effective, due to characteristics associated with dementia, carers resorted to deceptive strategies, like lies, which were seen as least acceptable. The findings highlight the emotional impact of deceptive strategies, the impact on relational dynamics and issues about the lack of formal guidance. The review recommends that more research be undertaken to understand more about the use of truth and deception strategies within dementia care, especially for informal carers, who were under-represented. Clinical and research implications are discussed. Paper two, the empirical paper, explored how informal carers made decisions about using truth or deception within everyday communication at home with a person with dementia. The study adopted Grounded Theory methodology to create a theory about the processes underlying carers’ decision-making about using truth or deception. The findings revealed that in everyday life, carers’ use of truth or deception strategies depended upon a number of triggers, motivations and conditional judgments. The core concept of the theory was that decisions about using truth and deception were ultimately made in the moment. This study adds to research by proposing a theory of decision-making for informal dementia carers. Clinical and research implications are discussed. Paper three, the executive summary, describes the main features of the study alongside recommendations for clinical practice and future research. It is more accessibly written so that it can be easily disseminated with a diverse audience, which includes informal and professional carers of people with dementia.
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Jones, Carys Llywela. "Application of the capability approach to health economics research involving informal carers of people with dementia." Thesis, Bangor University, 2013. https://research.bangor.ac.uk/portal/en/theses/application-of-the-capability-approach-to-health-economics-research-involving-informal-carers-of-people-with-dementia(20657989-69fd-47ca-b50d-035ea98b33d8).html.
Full textAbstract:
In the UK, the number of people with dementia is increasing along with life expectancy - over half of the £23bn annual cost of dementia is due to informal care time. Therefore, there is an economic argument for identifying clinically-effective and cost-effective ways to maintain and improve carer quality of life (QoL). This thesis explores the suitability of a capability based instrument, the ICECAP-O, for measuring QoL in informal carers of people with dementia. Methods: Systematic reviews, qualitative interviews, survey data and clinical trial data were used. Construct validity of the ICECAP-O was examined using baseline data from the Challenge FamCare study of people with dementia and challenging behaviours, and an online survey created to collect additional data. A cost-effectiveness analysis was undertaken using a subsample of carers in the REMCARE trial of joint-reminiscence therapy (RT). Results: The current evidence base for interventions to support carers of people with dementia is poor, with few economic evaluations existing. Qualitative work found the major themes affecting carer QoL overlapped well with capability instruments, suggesting this framework is suitable for carer research. Validity work found the ICECAP-O to be feasible and valid for use with carers. At the end of the 10 month RT trial, the mean difference in ICECAP-O scores between groups was -0.02 (bootstrapped 95% Cl of -0.1 05 to 0.066) and the mean difference in costs was £1 ,464 (bootstrapped 95% Cl of £758 to £2,313), RT was dominated by usual care. The cost-effectiveness acceptability curve indicated a 2% probability that RT was cost-effective at a willingness to pay threshold of £20,000 per point improvement and an 8% probability that RT was cost-effective at a threshold of £30,000 per point improvement on the ICECAP-O.
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Allan, Alicia C. "Influences on sleep-wake behaviour in older adults and community dementia care: Light exposure and partner impact." Thesis, Queensland University of Technology, 2016. https://eprints.qut.edu.au/94986/1/Alicia_Allan_Thesis.pdf.
Full textAbstract:
This project described sleep-wake behaviour in community-dwelling older adults and in community dementia care. It examined the applicability of a newly presented conceptual model (the Multifactorial Influences on Sleep Health model) to evaluate factors influencing sleep in ageing, with a particular focus on the importance of daytime light exposure and the impact of partners.
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Bryans, Michelle. "Perceptions of dementia : an exploratory study of the first signs noted by carers and primary care practitioners." Thesis, University of Edinburgh, 2006. http://hdl.handle.net/1842/29461.
Full textAbstract:
Primary care is often the first point of contact for people with dementia (Briggs & Askham, 1999) and primary care practitioners are recognised as having an integral role to play in the diagnosis and management of dementia (Downs, 1996). Around 70 percent of people with dementia living in the community live with their carer. Most informal carers are the spouse of daughter of the person with dementia (Alzheimer’s Scotland, 2000). Previous research has shown that caring for people with dementia can be stressful, although it also has many positive aspects, and that carers need support systems in place for themselves and their relative. The aim of the current study was to explore the first reported signs of dementia by two groups known to be closely involved with individuals within the earlier stages of the condition, carers and primary care practitioners. Previously unanalysed data collected from carers and practitioners who participated in the Downs et al (2003) study “Improving the response of primary care practitioners to people with dementia and their families: a randomised controlled trial of educational interventions”, was used. A grounded theory approach (Strauss & Corbin, 1990) was adopted to explore the first signs of dementia reported by 122 carers and 204 primary care practitioners. Five main categories and thirty-two subcategories related to cognitive, emotional, behavioural, physical and other (non-categorised) signs of dementia were generated. Statistical analysis was carried out to explore the effect of sociodemographic and occupational variables on the first signs of dementia reported by carers and practitioners, and the effect of training on practitioner signs reported.
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Swarbrick, Caroline Margaret. "Exploring how healthcare professionals and family carers identity pain in people with dementia and limited verbal skills." Thesis, University of Manchester, 2009. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.511259.
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Walker, Melvyn Dean. "Health-related quality of life assessment in dementia : development of a new instrument for patients and carers." Thesis, Cardiff University, 2001. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.393023.
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