Relevant bibliographies by topics / Dementia carers

Academic literature on the topic 'Dementia carers'

Author: Grafiati
Published: 10 December 2022
Last updated: 28 January 2023

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Journal articles on the topic "Dementia carers"

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LoGiudice, D., and A. Hassett. "Uncommon dementia and the carer's perspective." International Psychogeriatrics 17, s1 (September 2005): S223—S231. http://dx.doi.org/10.1017/s1041610205002048.

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There is much caregiving literature describing factors that affect carer burden, and interventions that may be useful for carers of those with common dementias such as Alzheimer's disease (AD). By contrast, relatively little information and few data are available on potentially diverse issues facing carers of those with uncommon dementias, such as frontotemporal dementia (FTD), Huntington's disease (HD) and human immunodeficiency virus (HIV) dementia. This paper highlights particular characteristics of caregiving for those with uncommon dementias, and the unique needs that may arise for this group of carers who often “fall between the net” of services and supports available. Further research into this area is required.
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van Haeften-van Dijk, A. Marijke, Franka J. M. Meiland, Bart J. J. Hattink, Ton J. E. M. Bakker, and Rose-Marie Dröes. "Community day care with carer support versus usual nursing home-based day care: effects on needs, behavior, mood, and quality of life of people with dementia." International Psychogeriatrics 28, no. 4 (December 7, 2015): 631–45. http://dx.doi.org/10.1017/s1041610215001921.

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ABSTRACTBackground:Several studies have shown that the combined community-based Meeting Centres Support Programme (MCSP) for people with mild to moderate dementia and their carers were more effective in reducing behavior and mood problems of people with dementia than traditional nursing home-based (NH) day care. We therefore investigated in this study whether community-based (CO) psychogeriatric day care for people with mild to severe dementia combined with carer support (in accordance with the MCSP), is more effective than regular NH day care.Methods:A pre-test–post-test control group design was used to compare the effect of CO and NH day care on care needs, behavior and mood problems, and quality of life of people with dementia. 138 dyads of people with mild to severe dementia and family carers participated in the study: 70 from (new and longer existing) CO day cares (experimental group), and 68 from NH day cares (control group). ANCOVAs were performed at post-tests, including baseline data as covariates.Results:After six months, no overall differences on outcome measures were found between CO and NH day cares. However, participants of recently started CO day cares showed fewer neuropsychiatric symptoms, whereas carers in the longer existing CO day cares reported fewer care needs compared to the control group (large effects). Persons with dementia cohabiting with their carer benefitted most from CO day care.Conclusions:This study shows that combined CO day care has promising added value compared to NH day care, especially for participants with dementia cohabiting with their carer.
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Marques, Maria J., Bob Woods, Eva Y. L. Tan, Marjolein de Vugt, and Frans Verhey. "325 - Relationship quality in dementia: Preliminary longitudinal analyses of the EU-JPND Actifcare cohort study." International Psychogeriatrics 32, S1 (October 2020): 83. http://dx.doi.org/10.1017/s1041610220002252.

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INTRODUCTIONRelationship quality (RQ) in dyads of persons with dementia and their family carers is important both as a clinical outcome and as a determinant of health and quality of life. In previous work we studied RQ using baseline data of a large-scale European longitudinal study on timely access to and use of community formal services in dementia (EU-JPND Acticare). We concluded that neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad, which were less favourable when reported by family carers. This and other associations (e.g. between carer-rated RQ and sense of coherence) were cautiously interpreted, in the context of a cross-sectional analysis.OBJECTIVESTo analyse how carer-reported RQ varies over time and to examine its most important influencing factors.METHODSWe present preliminary longitudinal analyses from the Actifcare cohort study of 451 community-dwelling persons with dementia and their primary carers in eight European countries (12-month follow-up). Comprehensive assessments included the Positive Affect Index (PAI) to assess RQ, persons with dementia’s neuropsychiatric symptoms, persons with dementia and carers’ unmet needs, carers’ anxiety and depression, social support, sense of coherence and stress.RESULTSCarers’ mean PAI scores decreased over the 12 -month period. The person with dementia neuropsychiatric symptoms and unmet needs, and carers’ perceived social support were significant predictors of carers’ RQ change.DISCUSSION AND CONCLUSIONWe analysed carer-reported RQ variation over time and predictors in a large European sample of persons with dementia and their family carers. As expected, RQ decreased over the oneyear follow-up period as the disease progressed. Its main predictors in this sample (neuropsychiatric symptoms and the person’s unmet needs, together with carers’ social support) can all influence the impact that caregiving has on the carer and on how time and energy-consuming caregiving is. The role of increased clinical symptoms (also affecting communication difficulties), together with carers’ exhaustion, must be equated. Overall, these results may help us to tailor interventions addressing RQ and potentially improve dementia outcomes.
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Mitchell, Eileen. "Managing Carer Stress: An Evaluation of a Stress Management Programme for Carers of People with Dementia." British Journal of Occupational Therapy 63, no. 4 (April 2000): 179–84. http://dx.doi.org/10.1177/030802260006300407.

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This article examines the effect of carer stress management using the Carers' Checklist (Hodgson et al 1998) as a measure of outcome. Pre-course and post-course questionnaires were used with carers, identified by health and social services professionals, who agreed to attend a structured stress management course. Seven out of the 10 identified carers, who resided in the West Dorset area, participated. Only one carer's wife was a resident in a nursing home; the others were caring actively at home. The main measures of outcome were the burden of care, including social, financial and physical demands in terms of the carers' own experience, and their level of understanding of stress management techniques. The carers who attended demonstrated a better awareness and understanding of stress and its management following the course. Positive measures of outcome were also determined by a decrease in the carers' rating in frequency of dementia-related problems, carer burden of dementia-related problems and overall carer burden. The findings confirm that structured stress management can reduce carer burden and offer better coping strategies through raising carers' awareness and understanding.
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Giebel, Clarissa, Sarah Robertson, Audrey Beaulen, Sandra Zwakhalen, Dawn Allen, and Hilde Verbeek. "“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands." International Journal of Environmental Research and Public Health 18, no. 22 (November 22, 2021): 12233. http://dx.doi.org/10.3390/ijerph182212233.

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Background: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. Methods: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia’s, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. Results: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country’s systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. Conclusions: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.
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Julieta, Camino, Khondoker Mizanur, Kishita Naoko, and Mioshi Eneida. "537 - Reported and observed task performance in dementia and the role of the carer management style." International Psychogeriatrics 33, S1 (October 2021): 81. http://dx.doi.org/10.1017/s1041610221002325.

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Background:Consistency between carers’ report of the people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance has been an important topic in the literature, but most studies have investigated whether carer’s burden and depression affect this report.Objectives:To (1) investigate if carer’s report of PwD’s performance of ADLs is consistent with PwD’s observed performance; and to (2) evaluate if carer management style has an effect on this discrepancy.Methods:Sixty-four PwD completed a performance-based ADL assessment (Assessment of Motor and Process Skills-AMPS) which entails the observation of ADL performance; their carers were interviewed using an informant-based ADL assessment (DAD), which records ADL performance as reported by the carer. Carers completed a dementia management-style scale (DMSS) that categorises the carer’s style in: criticism, active-management and encouragement. To investigate whether there was consistency between the DAD and the AMPS, a new continuous variable was created: the comparative ADL score. Cohen’s kappa was used to compare agreement/disagreement between the DAD and the AMPS. Multiple regression analysis explored whether carer styles could explain the discrepancy between the reported and observed performance of ADLs.Results:The majority of carers underestimated (71.9%) or overestimated (17.2%) (disagreement) the PwD’s ADL performance; only 10.9% of carers reached an agreement between reported and observed performance. Cohen’s kappa [k= -0.025 (95%CI -0.123 – 0.073)] indicated poor level of agreement between the DAD and the AMPS. Criticism, active-management and encouragement styles were included in the regression model: the comparative ADL score was used as the dependent variable. This combined model explained 18% (R2=0.178,F(3, 59)=4.26,p=<0.01) of the variance of the dependent variable. Active-management (β =0.037, t(62)=3.554, p=0.001) and encouragement (β =-0.024, t(62)=- 2.086, p=0.05) styles were the two factors that made the largest and statistically significant contribution to the model.Conclusions:the disagreement between the reported and the observed performance proved to be high in this group. The styles that carers use when dealing with dementia-related problems affected their report of ADL performance, which means that the strategies applied by carers to support ADL performance can be targeted to reduce the gap between reported and observed performance.
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Fitzgerald, Leslie R., Michael Bauer, Susan H. Koch, and Susan J. King. "Hospital discharge: recommendations for performance improvement for family carers of people with dementia." Australian Health Review 35, no. 3 (2011): 364. http://dx.doi.org/10.1071/ah09811.

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Background. It is acknowledge that discharge planning benefits both consumers and hospitals. What is not widely understood is the experience that the family carer of a person with a dementia has and whether the hospitals meet their in-hospital and post-hospital needs. Objective. To explore whether metropolitan and rural hospital discharge practices meet the needs of the family carer of a person with dementia. Results. Although this and other research indicates that a continuum of care model is beneficial to family caregivers, no evidence has been identified that family carers currently experience this type of quality planning. Family carers were often unaware of the existence of a hospital discharge plan and were rarely engaged in communication about the care of their family member with a dementia or prepared for discharge. Conclusion and recommendations. Discharge planning processes for family carers of people with dementia could be substantially improved. It is recommended that hospitals develop policy, process and procedures that take into account the family carer’s needs, develop key performance indicators and adopt best practice standards that direct discharge planning activities and early engagement of the family carer in healthcare decisions. It is recommended that health professionals be educated on communication, consultation and needs of family carers. What is known about the topic? The literature shows discharge planning can increase in patient and caregiver satisfaction, reduce post-discharge anxiety, reduce unplanned readmissions and reduce post-discharge complications and mortality. To be effective, discharge planning requires interdisciplinary collaboration; yet for people with a dementia there are insufficient system processes to support discharge planning, routine breakdowns in communication between patient, family caregivers and health professionals and inadequate admission and aftercare plans. There is little known about the discharge planning as it effects the family carer’s of people with dementia. What does this paper add? This research provides evidence of the family carer’s experience of metropolitan and rural hospital discharge as it relates to planning, preparation and support. It investigates how well the discharge planning process met the needs of the family carer and what improvements are required if hospital discharge planning is to be more effective. The research identifies a range of initiatives that hospital and health professionals can implement to improve current discharge practices for family carers of people with dementia. What are the implications for practitioners? This report makes recommendations for changes to hospital health systems and the discharge practices of health professionals. Hospitals need to develop policy, process and procedure that take into account family carer’s needs, develop key performance indicators that measure discharge planning practices, and adopt best practice activities that include such items as early engagement of the primary carer’s, the identification of a liaison health professional and implementation of a policy that requires family carers to be involved in and notified of an impending discharge. It is recommended that health professionals be educated on the needs of family carers as it relates to communication and consultation. The primary carer is involved in discussions and decisions about in-hospital and post-hospital treatment regimes and is in agreement with, and competent in, post-discharge treatments, therapies and support services.
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Bruce, Remia, Wendy Murdoch, Ashley Kable, Kerrin Palazzi, Carolyn Hullick, Dimity Pond, Christopher Oldmeadow, et al. "Evaluation of Carer Strain and Carer Coping with Medications for People with Dementia after Discharge: Results from the SMS Dementia Study." Healthcare 8, no. 3 (July 31, 2020): 248. http://dx.doi.org/10.3390/healthcare8030248.

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This study reports carer strain and coping with medications for people with dementia with an unplanned admission to hospital, and it evaluates the impact of a safe medication intervention on carer coping and carer strain. This was a quasi-experimental pre/post-controlled trial that included a survey of carers about managing medications for people with dementia after discharge. For 88 carers who completed surveys, 33% were concerned about managing medications, and 40% reported difficulties with medication management, including resistive behaviours by people with dementia. Dose administration aids were used by 72% of carers; however, only 15% reported receiving a recent home medicines review by a community pharmacist. High carer strain was reported by 74% of carers. Carer comments described many issues that contributed to high carer stress, as well as their engagement in vigilant activities to maintain medication safety. Strategies that can contribute to carers managing medications and reducing their strain include an increased use of dose administration aids, increased provision of home medicines reviews, and increased education of health professionals to provide adequate support and education about managing medications.
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de Andrés-Jiménez, Elena, Rosa Mª Limiñana-Gras, and Encarna Fernández-Ros. "Personality and Dementia: an Approach to Differential Profile of the Caregiver." European Journal of Investigation in Health, Psychology and Education 1, no. 3 (September 22, 2011): 85–94. http://dx.doi.org/10.1989/ejihpe.v1i3.7.

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The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.
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de Andrés-Jiménez, Elena, Rosa Mª Limiñana-Gras, and Encarna Fernández-Ros. "Personality and Dementia: an Approach to Differential Profile of the Caregiver." European Journal of Investigation in Health, Psychology and Education 1, no. 3 (September 22, 2011): 85–94. http://dx.doi.org/10.3390/ejihpe1030007.

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The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.
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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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Books on the topic "Dementia carers"

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Idle, Helen. Carers' journeys through dementia. Seaford: Homefield Place, 1996.

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Dementia with dignity: A guide for carers. 2nd ed. Sydney: McGraw-Hill, 1999.

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Sherman, Barbara. Dementia with dignity: A handbook for carers. Sydney: McGraw-Hill, 1994.

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McCurry, V. Dementia sufferers: Carers booklet : coping, caring, sharing. Londonderry: Area Mental Health Unit, Western Health and Social Services Board, 1992.

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Dementia with dignity: A handbook for carers. Sydney ; New York: McGraw-Hill Book, 1991.

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Jee, Maggie. Who cares?: Information and support for the carers of confused people. London: Health Education Authority, 1997.

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Hodgson, Claire. Carers' checklist: An outcome measure for people with dementia and their carers. London: Mental Health Foundation, 1998.

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Jaques, Alan. Reaching out to dementia sufferers and their carers. (S.l.): Age Concern Scotland, 1986.

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1954-, Whitman Lucy, ed. Telling tales about dementia: Carers share their stories. London: Jessica Kingsley Publishers, 2009.

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Allan, House, ed. 10 helpful hints for carers: Practical solutions for carers living with people with dementia. Stirling, Scotland: University of Stirling, 2009.

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Book chapters on the topic "Dementia carers"

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Blom, Marco, and Mia Duijnstee. "Behind the facts An insight into the burden on family carers of dementia patients." In Care-Giving in Dementia, 249–68. London: Routledge, 2021. http://dx.doi.org/10.4324/9781315830926-20.

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Pot, Anne Margriet, Kieren Egan, and Katrin Seeher. "Internet-based interventions for family carers of people with dementia." In Improving the Lives of People with Dementia through Technology, 150–60. London: Routledge, 2022. http://dx.doi.org/10.4324/9781003289005-14.

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Gardner, Paula, Stephen Surlin, Adekunle Akinyemi, Jessica Rauchberg, Caitlin McArthur, Yujiao Hao, Rong Zheng, and Alexandra Papaioannou. "Designing a Dementia-Informed, Accessible, Co-located Gaming Platform for Diverse Older Adults with Dementia, Family and Carers." In Lecture Notes in Computer Science, 58–77. Cham: Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-78111-8_4.

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Isaac, Adrienne R., and Heidi E. Hamilton. "Meaningfulness at the Intersection of Knowledge and Environmental Objects: Investigating Interactions in Art Galleries and Residences Involving Persons with Dementia and Their Carers." In Learning from the Talk of Persons with Dementia, 135–63. Cham: Springer International Publishing, 2020. http://dx.doi.org/10.1007/978-3-030-43977-4_8.

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Perakis, Konstantinos, Maria Haritou, and Dimitris Koutsouris. "ALADDIN, A Technology pLatform for the Assisted Living of Dementia elDerly INdividuals and Their Carers." In Distributed Computing, Artificial Intelligence, Bioinformatics, Soft Computing, and Ambient Assisted Living, 878–81. Berlin, Heidelberg: Springer Berlin Heidelberg, 2009. http://dx.doi.org/10.1007/978-3-642-02481-8_133.

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Meiland, Franka, Rose-Marie Dröes, and Stefan Sävenstedt. "Measuring the Impact of Cognitive Prosthetics on the Daily Life of People with Dementia and Their Carers." In Advanced Information and Knowledge Processing, 207–20. London: Springer London, 2010. http://dx.doi.org/10.1007/978-1-84882-551-2_14.

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Ineichen, Bernard. "Studying Dementia Careers." In Senile Dementia, 77–103. Boston, MA: Springer US, 1989. http://dx.doi.org/10.1007/978-1-4899-3476-5_6.

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Salomon, Rita. "Carer, look after yourself!" In Seeing Beyond Dementia, 91–92. London: Routledge, 2023. http://dx.doi.org/10.4324/9780429272196-14.

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Craven, Michael P., Maria Laura De Filippis, and Tom Dening. "Quality of Life Tools to Inform Co-design in the Development of Assistive Technologies for People with Dementia and Their Carers." In Ambient Assisted Living and Daily Activities, 394–97. Cham: Springer International Publishing, 2014. http://dx.doi.org/10.1007/978-3-319-13105-4_57.

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Caprio, Thomas V., and Nicole Kosier. "Dementia." In Neuropalliative Care, 73–87. Cham: Springer International Publishing, 2018. http://dx.doi.org/10.1007/978-3-319-93215-6_6.

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Conference papers on the topic "Dementia carers"

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Liu, Noreena Yi-Chin, Gary Wills, and Ashok Ranchhod. "Game for Supporting Dementia Carers." In 2018 IEEE Games, Entertainment, Media Conference (GEM). IEEE, 2018. http://dx.doi.org/10.1109/gem.2018.8516466.

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Reeves, Helen, Gina Gardner, Fiona McCracken, Asima Hussain, and Pat Roberts. "P-116 Supporting carers during a pandemic – transforming dementia carers’ support." In A New World – Changing the landscape in end of life care, Hospice UK National Conference, 3–5 November 2021, Liverpool. British Medical Journal Publishing Group, 2021. http://dx.doi.org/10.1136/spcare-2021-hospice.133.

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Al-Megren, Shiroq, Khalid Majrashi, and Ragad Mohammad Allwihan. "”The Dementia Diva Strikes Again!”: A Thematic Analysis of How Informal Carers of Persons with Dementia Use TikTok." In MobileHCI '21: 23rd International Conference on Mobile Human-Computer Interaction. New York, NY, USA: ACM, 2021. http://dx.doi.org/10.1145/3447527.3474857.

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Karlsen, Kristine, Konstantinos Zachos, Neil Maiden, Sara Jones, Ian Turner, Malcolm Rose, and Kevin Pudney. "Supporting Reflection and Creative Thinking by Carers of Older People with Dementia." In 5th International ICST Conference on Pervasive Computing Technologies for Healthcare. IEEE, 2011. http://dx.doi.org/10.4108/icst.pervasivehealth.2011.246124.

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Mulvenna, Maurice, Aideen Gibson, Claire McCauley, Assumpta Ryan, Raymond Bond, Liz Laird, Kevin Curran, Brendan Bunting, and Finola Ferry. "Behavioural Usage Analysis of a Reminiscing App for People Living with Dementia and their Carers." In ECCE 2017: European Conference on Cognitive Ergonomics 2017. New York, NY, USA: ACM, 2017. http://dx.doi.org/10.1145/3121283.3121289.

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Picking, Richard, and Joanne Pike. "Exploring the effects of interaction with a robot cat for dementia sufferers and their carers." In 2017 Internet Technologies and Applications (ITA). IEEE, 2017. http://dx.doi.org/10.1109/itecha.2017.8101940.

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Luís-Ferreira, Fernando, João Gião, Pedro Corista, Jorge Calado, and Joao Sarraipa. "Monitoring, Risk Assessment and Actuation for Alzheimer Patients: A Case Study." In ASME 2018 International Mechanical Engineering Congress and Exposition. American Society of Mechanical Engineers, 2018. http://dx.doi.org/10.1115/imece2018-88166.

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Alzheimer is one of the most frequent types of dementia. With the increasing extension of life expectancy, and an increasing incidence above sixty-five years. Near to thirteen million cases are foreseen in 2050 with an estimate cost above two hundred billion dollars in associated care expenses. It becomes important to take measures to ensure quality of life to patients, carers and promote the sustainability of public and personal finances. The major concerns with those patients are memory faults with the tendency for wandering and get lost. The present work proposes a solution for permanent monitoring, risk assessment and reaction, when needed, while extending battery autonomy for the worn device. Data is periodically uploaded to be processed and analysed in a remote infrastructure such as FIWARE. The aim is to establish profiles that better adapt to each citizen of the evergrowing community of dementia patients, including those with Alzheimer disease.
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Vickland, Victor. "Interactions Between Patient And Carers In An Agent-Based Model Of Behavioural And Psychological Symptoms Of Dementia." In 25th Conference on Modelling and Simulation. ECMS, 2011. http://dx.doi.org/10.7148/2011-0048-0054.

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Boyd, Kyle, Chris Nugent, Mark Donnelly, Raymond Bond, Roy Sterritt, and Phillip Hartin. "An investigation into the usability of the STAR training and re-skilling website for carers of persons with dementia." In 2014 36th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC). IEEE, 2014. http://dx.doi.org/10.1109/embc.2014.6944535.

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Dixon, J. "P76 Preparedem: helping people with dementia and their carers prepare for care in advanced illness and end of life." In ACP-I Congress Abstracts. British Medical Journal Publishing Group, 2019. http://dx.doi.org/10.1136/spcare-2019-acpicongressabs.155.

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Reports on the topic "Dementia carers"

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Di Campli San Vito, Patrizia, Stephen Brewster, Satvik Venkatesh, Eduardo Miranda, Alexis Kirke, David Moffat, Sube Banerjee, Alex Street, Jorg Fachner, and Helen Odell-Miller. RadioMe: Supporting Individuals with Dementia in Their Own Home... and Beyond? CHI '22 Workshop - Designing Ecosystems for Complex Health Needs, 2022. http://dx.doi.org/10.36399/gla.pubs.267520.

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Dementia is an illness with complex health needs, varying between individuals and increasing in severity over time. Approaches to use technology to aid people with dementia are often designed for a specific environment and/or purpose, such as the RadioMe system, a system designed to detect agitation in people with mild dementia living in their own home and calming them with music when agitation is detected. Both the monitoring and intervention components could potentially be beneficially used outside of the own home to aid people with dementia and carers in everyday life. But the adaptation could put additional burdens on the carer, as many decisions and the handling of the data and software could rely on their input. In this paper we discuss thoughts on the potential role of the carer for adaptations of specified system’s expansion to a larger ecosystem on the example of RadioMe.
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Passos, Lígia, João Tavares, and Daniela Figueiredo. Mealtime difficulties in dementia: a scoping review protocol about the impacts of interventions on people with dementia, care staff and care context/environment. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, August 2021. http://dx.doi.org/10.37766/inplasy2021.8.0015.

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Butler, Mary, Joseph E. Gaugler, Kristine M. C. Talley, Hamdi I. Abdi, Priyanka J. Desai, Susan Duval, Mary L. Forte, et al. Care Interventions for People Living With Dementia and Their Caregivers. Agency for Healthcare Research and Quality (AHRQ), July 2020. http://dx.doi.org/10.23970/ahrqepccer231.

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Reuben, David, Neil Wenger, Lee Jennings, and Ronald Hays. Testing a Way to Help Patients with Dementia and Their Caregivers Set Goals for Care. Patient-Centered Outcomes Research Institute® (PCORI), October 2019. http://dx.doi.org/10.25302/10.2019.me.13035845.

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Hauer, Klaus, Ilona Dutzi, Christian Werner, Jürgen M. Bauer, and Phoebe Ullrich. Implementation of intervention programs specifically tailored for patients with CI in early rehabilitation during acute hospitalization: a scoping review protocol. INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols, October 2022. http://dx.doi.org/10.37766/inplasy2022.10.0067.

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Review question / Objective: What is the current status of implementation of interventional programs on early functional rehabilitation during acute, hospital-based medical care, specifically tailored for older patients with CI and what are the most appropriate programs or program components to support early rehab in this specific population? This study combines a systematic umbrella review with a scoping review. While an umbrella review synthesizes knowledge by summarizing existing review papers, a scoping review aims to provide an overview of an emerging area, extracting concepts and identify the gaps in knowledge. The study focuses on older hospitalized adults (>65 yrs.) receiving ward based early rehabilitation. The focus within this review is on study participants with cognitive impairment or dementia. The study targets at controlled trials independent of their randomization procedure reporting on an early functional rehabilitation during hospitalization. Trials that were conducted in different or mixed settings (e.g. inpatient and aftercare intervention) without a clear focus on hospital based rehabilitation were excluded. The study aim is to identify the presence of CI specific features for early rehabilitation including: CI/dementia assessment, sub-analysis of results according to cognitive status, sample description defined by cognitive impairment, program modules specific for geriatric patients CI.
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Supporting carers of people with dementia. National Institute for Health Research, May 2016. http://dx.doi.org/10.3310/highlight-000846.

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Case managers improve outcomes for people with dementia and their carers. National Institute for Health Research, April 2018. http://dx.doi.org/10.3310/signal-00587.

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Informal dementia carers had to make difficult decisions about paid care during COVID-19. National Institute for Health Research, January 2021. http://dx.doi.org/10.3310/alert_43691.

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Occupational therapy at home may benefit people with dementia and their carers. National Institute for Health Research, February 2020. http://dx.doi.org/10.3310/signal-000879.

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Working may improve quality of life for carers of people with dementia. National Institute for Health Research, October 2020. http://dx.doi.org/10.3310/alert_41860.

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