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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Jackson, Graham A., and Debbie Browne. "Supporting carers of people with dementia: What is effective?" BJPsych Advances 23, no. 3 (May 2017): 179–86. http://dx.doi.org/10.1192/apt.bp.113.011288.
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Carer stress is well documented, especially in those caring for individuals with dementia. A recommendation of all national dementia strategies is to provide excellent support and information to informal carers of people with dementia. NICE guidance suggests that a range of tailored interventions, including psychological input, psychoeducation and training courses, should be offered to reduce caregiver burden and stress, although good-quality outcome-based evidence is lacking. On the basis of a narrative review of the literature, we describe individual and multicomponent carer support packages and discuss their evidence base, reflecting on outcomes for carers. Multicomponent interventions have the best evidence for effectiveness.Learning Objectives• Consider the risks of both physical and psychological harm experienced by carers of people with dementia (often referred to as carer burden or caregiver burden)• Be aware of the interventions available for the support of carers of people with dementia• Consider the evidence for the effectiveness of these interventions and be aware of the limitations of the evidence
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Daley, Stephanie, Nicolas Farina, Laura Hughes, Elise Armsby, Nazire Akarsu, Joanna Pooley, Georgia Towson, et al. "Covid-19 and the quality of life of people with dementia and their carers—The TFD-C19 study." PLOS ONE 17, no. 1 (January 19, 2022): e0262475. http://dx.doi.org/10.1371/journal.pone.0262475.
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Introduction COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study. Methods We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer. Results 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers. Discussion It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.
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Hennings, J., K. Froggatt, and J. Keady. "Approaching the end of life and dying with dementia in care homes: the accounts of family carers." Reviews in Clinical Gerontology 20, no. 2 (April 22, 2010): 114–27. http://dx.doi.org/10.1017/s0959259810000092.
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SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.
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Cooper, Claudia, Julie Barber, Mark Griffin, Penny Rapaport, and Gill Livingston. "Effectiveness of START psychological intervention in reducing abuse by dementia family carers: randomized controlled trial." International Psychogeriatrics 28, no. 6 (December 11, 2015): 881–87. http://dx.doi.org/10.1017/s1041610215002033.
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ABSTRACTBackground:Family carers of people with dementia frequently report acting abusively toward them and carer psychological morbidity predicts this. We investigated whether START (STrAtegies for RelaTives), a psychological intervention which reduces depression and anxiety in family carers also reduces abusive behavior in carers of people living in their own homes. We also explored the longitudinal course of carer abusive behavior over two year.Methods:We included self-identified family carers who gave support at least weekly to people with dementia referred in the previous year to three UK mental health services and a neurological dementia service. We randomly assigned these carers to START, an eight-session, manual-based coping intervention, or treatment as usual (TAU). Carer abusive behavior (Modified Conflict Tactic Scale (MCTS) score ≥2 representing significant abuse) was assessed at baseline, 4, 8, 12, and 24 months.Results:We recruited 260 carers, 173 to START and 87 to TAU. There was no evidence that abusive behavior levels differed between randomization groups or changed over time. A quarter of carers still reported significant abuse after two years, but those not acting abusively at baseline did not become abusive.Conclusion:There was no evidence that START, which reduced carer anxiety and depression, reduced carer abusive behavior. For ethical reasons, we frequently intervened to manage concerning abuse reported in both groups, which may have disguised an intervention effect. Future dementia research should include elder abuse as an outcome, and consider carefully how to manage detected abuse.
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SCHOFIELD, HILARY, BARBARA MURPHY, HELEN E. HERRMAN, SIDNEY BLOCH, and BRUCE S. SINGH. "Carers of people aged over 50 with physical impairment, memory loss and dementia: a comparative study." Ageing and Society 18, no. 3 (May 1998): 355–69. http://dx.doi.org/10.1017/s0144686x98006965.
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While studies investigating factors associated with carer burden suggest that intellectual impairment and behavioural disturbance in the care recipient are more demanding for the carer than physical impairment, comparative research findings are equivocal. Family carers of people with a long-term illness or disability were identified through a survey of 26,000 households in Victoria, Australia. Focusing on carers of those aged over 50 years, three subsamples were selected: 186 carers of relatives with physical impairment only, 182 carers of those with diagnosed memory loss and 117 carers of those with intellectual impairment diagnosed as dementia. Carers of physically impaired relatives reported better health, greater life satisfaction, and less overload, negative affect, family conflict, anger and resentment than carers of those with intellectual impairment, whether labelled as dementia or not. Despite lower impairment levels in the care recipient, carers of those with undiagnosed memory loss reported more resentment about their caring role than carers of those with a diagnosed dementia. The effects on the carer of significantly greater impairment in the dementia care recipient group may be ameliorated by having a diagnosis, bringing with it the potential for increased understanding and tolerance. Fortunately, negative feelings predictive of a sense of burden are subject to a range of interventions: providing information to promote understanding; counselling to tackle negative feelings and family conflict; guidelines to deal with behaviour problems and physical aspects of caring; and community services to reduce overload.
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Gridley, Kate, Fiona Aspinal, Gillian Parker, Helen Weatherly, Rita Faria, Francesco Longo, and Bernard van den Berg. "Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study." Health Services and Delivery Research 7, no. 12 (March 2019): 1–198. http://dx.doi.org/10.3310/hsdr07120.
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Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.
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Teahan, Áine, Patricia Carney, Suzanne Cahill, and Eamon O’Shea. "Establishing priorities for psychosocial supports and services among family carers of people with dementia in Ireland." Dementia 20, no. 6 (January 9, 2021): 2109–32. http://dx.doi.org/10.1177/1471301220984907.
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Introduction Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
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Jameson, Sonja, Lynne Parkinson, and Annie Banbury. "After the care journey: exploring the experiences of family carers of people living with dementia." Ageing and Society 40, no. 11 (June 3, 2019): 2429–47. http://dx.doi.org/10.1017/s0144686x19000667.
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AbstractWhile the burden of caring for people living with dementia has been well documented, considerably less is known about how carers transition into post-care life. This study aimed to understand the experiences of primary family care-givers of people with dementia after the person with dementia has died. A specific focus of the research was understanding the barriers to transitioning into a positive post-care life, and facilitators that help sustain carers as they move forward after their care journey has ended. A qualitative exploratory, descriptive study was undertaken with nine primary carers for a family member who died with dementia (five spouses and four adult children). Semi-structured face-to-face or telephone interviews were conducted with carers between July and August 2016. Interview transcripts were analysed using a thematic approach. A number of factors that can act as barriers or facilitators to transition for carers were identified. Contextualising loss, restructuring identity, psychological health issues and the influence of social attitudes seemed to have a strong influence on carer outcomes. The findings highlight the need for further systematic social and informational support for carers to moderate post-care trajectories and improve carer transition.
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Dempsey, Laura, Maura Dowling, Philip Larkin, and Kathy Murphy. "Providing care for a person with late-stage dementia at home: What are carers’ experiences?" Dementia 19, no. 2 (May 10, 2018): 352–74. http://dx.doi.org/10.1177/1471301218774937.
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Background It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief; (2) Parenting the parent; (3) Seeking support; (4) Death, dying and life after death. Conclusion Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death; however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.
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Hudson, Georgie, Sonja M. Jansli, Sinan Erturk, Daniel Morris, Clarissa M. Odoi, Angela Clayton-Turner, Vanessa Bray, et al. "Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study." JMIR Aging 5, no. 1 (January 24, 2022): e30388. http://dx.doi.org/10.2196/30388.
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Background Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter. Objective The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods. Methods A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter’s official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863). Results A total of 25.94% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers’ framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6%), unfounded claims about the cures or causes of dementia (n=11, 1.3%), or providing armchair diagnoses of dementia (n=21, 2.4%). Conclusions This is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness.
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Wijeratne, Chanaka. "Review: Pathways to Morbidity in Carers of Dementia Sufferers." International Psychogeriatrics 9, no. 1 (March 1997): 69–79. http://dx.doi.org/10.1017/s1041610297004225.
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The recent literature on informal carers of dementia patients is reviewed. Families bear the major responsibility for such care. The production of “burden” in carers is a complex process, involving developmental and cultural factors, in addition to the stressors of dementia itself. Also influential are the carer's gender, coping style, social network, and the carer's level of inimacy with the elder. The interpretation of actual morbidity is complicated by methodologic problems. However, carers appear to suffer from at least moderate levels of psychological symptomatology. Carers tend to judge their own health to be poorer than that of controls. Some studies have also found aspects of caregiving to be associated with elder abuse, but this is controversial. Caregiving in dementia appears to be at least as stressful as that in chronic physical illness and depression. Finally, the implications for service provision and future research are considered.
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Sawan, Mouna J., Melissa Gench, Christine Bond, Yun-Hee Jeon, Sarah N. Hilmer, Timothy F. Chen, and Danijela Gnjidic. "Development of a tool to evaluate medication management guidance provided to carers of people living with dementia at hospital discharge: a mixed methods study." BMJ Open 12, no. 5 (May 2022): e058237. http://dx.doi.org/10.1136/bmjopen-2021-058237.
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ObjectiveMedication management guidance for carers of people with dementia at hospital discharge is important to prevent medication-related harm during transitions of care. This study aimed to develop a tool to evaluate medication management guidance provided to carers of people with dementia at hospital discharge.DesignThe tool was developed using mixed methods involving two stages. Stage 1 involved item generation and content validation. Items were based on a previous qualitative study and systematic review. Content validation involved experts and consumers with knowledge or experience of medication management guidance in the acute care setting, and rating each item on importance and relevance. Stage 2 involved conducting cognitive interviews with carers of people with dementia to pretest the tool.SettingFor stage 1, experts and consumers from Australia, USA and New Zealand were included. For stage 2, carers of people with dementia were recruited across Australia.Participants18 experts and consumers participated in round 1 of content validation, and 13 experts and consumers completed round 2. Five carers of people with dementia participated in cognitive interviews.ResultsThe final tool contained 30 items capturing information across five domains: (1) provision of medication management guidance at hospital discharge; (2) carer understanding of medication management guidance provided at discharge; (3) carer engagement in discussing the safe use of medications at discharge; (4) carer preparedness to conduct medication management activities after discharge; and (5) co-ordination of medication management guidance after discharge.ConclusionsWe developed the first tool to assess medication management guidance provided for carers of people with dementia at hospital discharge. The tool may be useful to inform future research strategies to improve the delivery of medication management guidance at discharge.
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Lethin, Hanson, Margioti, Chiatti, Gagliardi, Vaz de Carvalho, and Fänge. "Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study." Social Sciences 8, no. 7 (June 30, 2019): 203. http://dx.doi.org/10.3390/socsci8070203.
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The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 informal carers, transcribed and analyzed with manifest content analysis. Needs and expectations of support among persons with dementia were expressed as the importance of “Participation in my own care,” “Attitude of the informal carers,” and “Trusting relationships with informal carers.” Informal carers’ needs and expectations of support were expressed as the importance of “Formal care and services,” “Getting out of a carer mindset,” and “Family context.” The findings from this study highlighted that persons with dementia were well aware of their cognitive impairments and tried to maintain their independence, with both formal and informal care to help remain “being themselves.” Health professionals should acknowledge persons with dementia and informal carers’ well-being, and acknowledge the importance of their needs together with an understanding of the importance of continuity of frontline carers to building trusting relationships.
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Brodaty, Henry, and Dusan Hadzi-Pavlovic. "Psychosocial Effects on Carers of Living with Persons with Dementia." Australian & New Zealand Journal of Psychiatry 24, no. 3 (September 1990): 351–61. http://dx.doi.org/10.3109/00048679009077702.
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A survey of members of the Alzheimer's Disease and Related Disorders Society confirmed high rates of psychological morbidity, though not of depression, and social isolation in family carers of persons with dementia. Psychological morbidity in carers was associated with having an affected person at home, the carer being a spouse, demanding problem behaviours, poor physical health in the carer, social isolation, dissatisfaction with social supports, greater use of psychotropic medication, and a deteriorated marital relationship. Carers and patients had high rates of consultations with doctors and other health professionals. There was a vulnerable group of carers who were impaired psychologically, socially and physically. The identification of risk factors to carer morbidity may lead to useful interventions.
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Camden, Andrew, Gill Livingston, and Claudia Cooper. "Reasons why family members become carers and the outcome for the person with dementia: results from the CARD study." International Psychogeriatrics 23, no. 9 (July 1, 2011): 1442–50. http://dx.doi.org/10.1017/s1041610211001189.
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ABSTRACTBackground: Using a representative secondary care survey for the first time, we explored family carers’ reasons for providing care. We hypothesized that carers with a positive rather than negative motivation for caring would be less abusive towards the care recipient and more likely to be caring for someone still living at home a year later.Methods: We interviewed 220 consecutively referred dementia family/friend carers from UK Community Mental Health Teams. We asked non-spousal carers why they were the main carer. Our main outcomes were the revised Modified Conflict Tactics Scale scores, measuring abusive behavior by the carer, and admission of the person with dementia to a care home.Results: Nineteen (17.1%) said they were the main carer due to the high quality of their relationship with the care recipient, their willingness to take on or their suitability for the carer role. A further 22 (19.8%) said they were the main carer due to other potential carers’ negative relationship with the care recipient, unwillingness or lack of suitability for the role. Carers who gave the latter explanation tended to be more anxious at baseline (F = 3.0, p = 0.055), reported higher abusive behavior towards the care recipient a year later after controlling for sociodemographic variables (t = 2.0, p = 0.05), and their care recipient was more likely to be admitted to a care home in the following year (hazards ratio 9.9, p = 0.040).Conclusions: We found preliminary evidence that carers’ reasons for providing care predict the well-being of the care recipient. Future studies involving dementia family carers should consider asking why the main carer assumed this role.
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Haaksma, Miriam L., Colette O'Driscoll, Karlijn J. Joling, Wilco P. Achterberg, Anneke L. Francke, Jenny T. van der Steen, and Hanneke J. A. Smaling. "Evaluating the feasibility, experiences, facilitators of and barriers to carers and volunteers delivering Namaste Care to people with dementia in their own home: a qualitative interview study in the UK and the Netherlands." BMJ Open 12, no. 11 (November 2022): e063422. http://dx.doi.org/10.1136/bmjopen-2022-063422.
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ObjectivesTo evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers’ experiences with the programme.DesignQualitative interview study with two phases: (1) preparation phase; (2) pilot phase.SettingPrivate residences of community-dwelling people with dementia in the UK and the Netherlands.ParticipantsFamily carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews).InterventionNamaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions.ResultsPhase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7–10).ConclusionWe recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5–2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia.Trial registration numberNL5570
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Samsi, Kritika, and Jill Manthorpe. "Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers." International Psychogeriatrics 25, no. 6 (March 19, 2013): 949–61. http://dx.doi.org/10.1017/s1041610213000306.
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ABSTRACTBackground: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored.Methods: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts.Results: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers’ active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this.Conclusions: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.
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Casey, Dympna, Una Lynch, Adeline Cooney, Catherine Houghton, Siobhan Smyth, Fionnuala Jordan, and Heike Felzman. "To Lie or Not to Lie: The Views of People With Dementia and Their Carers." Innovation in Aging 4, Supplement_1 (December 1, 2020): 758. http://dx.doi.org/10.1093/geroni/igaa057.2734.
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Abstract In Ireland over 36,000 people with dementia live at home cared for by informal carers. Yet often these carers do not know how to deal with cognitive symptoms, including repeated questions wherein ‘truthful’responses cause distress. Carers face a dilemma, do they avoid, distract or ‘correct’ the person and tell the ‘truth’, or lie? This paper explores the concept of lying from the perspective of the carer and person with dementia. A descriptive qualitative methodology was used. Focus groups with a purposive sample of people with memory problems (n = 14) and carers (n = 18) were conducted. The results found that deliberate lying with the intention to deceive was deemed unacceptable by all. However, in certain circumstances telling a ‘good lie’ or ‘white lie’ was considered acceptable when the carer knew the person and the intention behind the ‘lie’ was to mitigate the distress of the person with dementia.
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Chacko, Emme, Benjamin Ling, Nadav Avny, Yoram Barak, Sarah Cullum, Fred Sundram, and Gary Cheung. "Mindfulness-Based Cognitive Therapy for Stress Reduction in Family Carers of People Living with Dementia: A Systematic Review." International Journal of Environmental Research and Public Health 19, no. 1 (January 5, 2022): 614. http://dx.doi.org/10.3390/ijerph19010614.
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The prevalence of dementia is increasing and the care needs of people living with dementia are rising. Family carers of people living with dementia are a high-risk group for psychological and physical health comorbidities. Mindfulness-based interventions such as mindfulness-based cognitive therapy show potential for reducing stress experienced by family carers of people living with dementia. This study aims to systematically assess the efficacy of mindfulness-based cognitive therapy in reducing stress experienced by family carers of people living with dementia. Electronic databases including MEDLINE, APA PsycINFO, EMBASE, CINAHL, Scopus, Web of Science, Cochrane Library, AMED, ICTRP, and ALOIS were searched for relevant studies up to August 2020. All types of intervention studies were included. Quantitative findings were explored. Seven studies were eligible for inclusion. The analysis showed that there was a statistically significant reduction in self-rated carer stress in four studies for the mindfulness-based cognitive therapy group compared to controls. One study that was adequately powered also showed reductions in carer burden, depression, and anxiety compared to control. Mindfulness-based cognitive therapy appears to be a potentially effective intervention for family carers of people living with dementia, but large, high-quality randomized controlled trials in ethnically diverse populations are required to evaluate its effectiveness.
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Duprey, Jennie. "Dementia and the impact on carers." FPOP Bulletin: Psychology of Older People 1, no. 119 (April 2012): 10–16. http://dx.doi.org/10.53841/bpsfpop.2012.1.119.10.
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‘You’re as sick as they are but you’re not getting the support they are.’Exploring the views of relatives and carers in relation to the design of a carer support group offered by an older-adult inpatient ward.This mixed-methods service-based study aimed to explore the views of relatives and carers in relation to the design of a support group offered by an organic mental health older adult inpatient ward.
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Shehadeh, Anas, Sharyn Hunter, and Sarah Jeong. "Self-Management of Dementia by Family Carers: A Scoping Review." Gerontology and Geriatric Medicine 7 (January 2021): 233372142110166. http://dx.doi.org/10.1177/23337214211016694.
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Family carers increasingly take on the responsibility of self-management of dementia as the condition progresses. However, research on this topic is scarce. This scoping review aimed to identify the key characteristics related to self-management of dementia by carers including its components, theoretical/conceptual frameworks that underpinned these components and measurements. A scoping review was conducted in 8 databases and 16 publications met the inclusion criteria. Twenty-two components were identified and grouped into two categories: activities and carer characteristics and skills. The identified theoretical/conceptual frameworks were numerous and varied as were the measures. There was a little consistency of the key characteristics of self-management of dementia by carers. The findings assist carers and healthcare providers to understand the components involved in self-managing dementia which will guide the development and delivery of self-management support interventions for carers. Further research is required to validate these findings and to develop specialized conceptual frameworks and measures.
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Giebel, Clarissa, Katarzyna Lion, Maria Mackowiak, Rabih Chattat, PN Suresh Kumar, Monica Cations, Mark Gabbay, et al. "Amplifying dementia as a global public health problem: A cross-country comparison of the impact of COVID-19 pandemic." International Psychogeriatrics 33, S1 (October 2021): 23–24. http://dx.doi.org/10.1017/s104161022100154x.
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Background:Emerging evidence describes impacts of the COVID-19 pandemic upon people living with dementia and their informal carers, however without evidence-based global comparisons to date. The aim of this international study was to explore and compare the impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries.Methods:People with dementia and informal carers from the UK, Australia, Italy, India, and Poland participated in remote semi-structured interviews. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites.Results:Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were limited in benefit and usability for those with dementia. Carers frequently described noticeably deteriorating cognitive and physical health in people with dementia.Conclusions:The pandemic has amplified dementia as a global public health problem, and both people affected by the condition ad their carers need support to better access vital support services to live well. This is even more important with emerging new waves and new variants of the virus affecting different countries, in our globally connected world.
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Balsinha, Conceição, Steve Iliffe, Sónia Dias, and Manuel Gonçalves-Pereira. "431 - DEMENTIA IN PRIMARY CARE AND DOCTOR-PATIENT-CARER INTERACTIONS: PRELIMINARY FINDINGS." International Psychogeriatrics 32, S1 (October 2020): 147. http://dx.doi.org/10.1017/s1041610220002847.
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INTRODUCTION: Primary care visits of persons with dementia involve different types of communication, bringing together the patient, the family carer and the general practitioner (GP). A particular challenge is the necessary involvement of a third person (the carer) in patient-doctor encounters (or the patient in carer-doctor encounters, as dementia advances). These triad dynamics should be better understood, as health outcomes are expected to result from or be mediated by them.OBJECTIVE: Our aim is to explore triadic dynamics in Portuguese primary care consultations with persons with dementia, their family carers and GPs.METHODS: This is the first part of an ongoing project (Dementia in Primary Care: the Patient, the Carer and the Doctor in the Medical Encounter - Bayer Investigation Grant | NOVAsaúde Ageing 2018). Consultations with persons with dementia, their carers and GPs (purposive sampling) are audio-recorded, transcribed verbatim and thematically analysed. We report the analysis of interactions of the first six consultations, using NVIVO® software.RESULTS: The most frequent type of interaction was between GPs and carers, followed by interactions involving the whole triad. The patients who had more recent relationships with their GPs tended to participate less, irrespective of the stage of dementia. Carers were the ones most often initiating triadic interactions, and GPs the ones most often terminating them by directly addressing the patients. Doctor-carers interactions were very sparse in some consultations.DISCUSSION AND CONCLUSION: These preliminary findings suggest that doctor-patient interactions may be limited in a number of GPs’ consultations, seemingly compromising patient-centred approaches. Nevertheless, even when GPs were involved in triadic interactions they often tried to address the patient directly. We are looking forward to complete this part of the project: to our knowledge, there is practically no evidence from live-recorded primary care consultations about these triadic dynamics.
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Bosboom, Pascalle R., Helman Alfonso, Joanna Eaton, and Osvaldo P. Almeida. "Quality of life in Alzheimer's disease: different factors associated with complementary ratings by patients and family carers." International Psychogeriatrics 24, no. 5 (January 16, 2012): 708–21. http://dx.doi.org/10.1017/s1041610211002493.
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ABSTRACTBackground: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer–carer perspective and carer–patient perspective.Methods: A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients’ self-reported QoL ratings and two types of carer-reported QoL ratings: carer–patient and carer–carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.Results: Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers’ QoL ratings.Conclusion: Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.
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Leung, Dara K. Y., Kayla K. Y. Wong, Aimee Spector, and Gloria H. Y. Wong. "Exploring dementia family carers’ self-initiated strategies in managing behavioural and psychological symptoms in dementia: a qualitative study." BMJ Open 11, no. 8 (August 2021): e048761. http://dx.doi.org/10.1136/bmjopen-2021-048761.
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ObjectivesCarer’s self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers’ BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers.DesignQualitative study using thematic framework method.SettingCommunity setting in Hong Kong.Participants16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement.ResultsSix overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers’ distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers’ self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.
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MCINTYRE, ANNE, and FRANCES REYNOLDS. "There's no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls." Ageing and Society 32, no. 5 (July 22, 2011): 873–96. http://dx.doi.org/10.1017/s0144686x11000699.
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ABSTRACTOlder people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.
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Cheung, Gary, April Yuehan Su, Karen Wu, Blake Yue, Susan Yates, Adrian Martinez Ruiz, Rita Krishnamurthi, and Sarah Cullum. "The Understanding and Experiences of Living with Dementia in Chinese New Zealanders." International Journal of Environmental Research and Public Health 19, no. 3 (January 24, 2022): 1280. http://dx.doi.org/10.3390/ijerph19031280.
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Little is known about the lived experience of dementia in the New Zealand Chinese community. This study aims to explore the understanding and experiences of living with dementia in Chinese New Zealanders. Participants were recruited from a memory service and a community dementia day programme. In-depth interviews were conducted by bilingual and bicultural researchers. The recorded interviews were transcribed and thematically analysed. Sixteen people living with dementia and family carers participated in this study. The first theme revealed the lack of understanding of dementia prior to diagnosis, the commonly used term of “brain shrinkage” and that dementia is associated with getting older. The second theme covered the symptoms experienced by people with dementia and how family carers found anhedonia and apathy particularly concerning. The third theme highlighted the tension between cultural obligation and carer stress. The fourth theme is about the stigma attached to dementia. Our results provide some insight into ways to improve dementia care for Chinese New Zealanders, including targeted psychoeducation in the Chinese community to improve awareness and to reduce stigma, access to person-centred interventions, and learning about strategies for healthy ageing to live well with dementia, and emotional support and psychoeducation for family carers to reduce carer stress.
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Smaling, Hanneke J. A., Bram Tilburgs, Wilco P. Achterberg, and Mandy Visser. "The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study." International Journal of Environmental Research and Public Health 19, no. 1 (January 4, 2022): 519. http://dx.doi.org/10.3390/ijerph19010519.
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Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.
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Cawley, Rosanne, Kathryn Dykes, Gill Drummond, and Ruth Watson. "The carers innovation project: Supporting inpatient dementia caregivers." FPOP Bulletin: Psychology of Older People 1, no. 130 (April 2015): 30–36. http://dx.doi.org/10.53841/bpsfpop.2015.1.130.30.
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The carers innovation project aimed to provide individualised support for inpatient carers to Greater Manchester West Mental Health NHS Foundation Trust’s (GMW) dementia care wards. If a carer ‘opted in’ to this service, they were offered either face-to-face meetings on the ward, home visits or telephone support with an assistant psychologist. Between May 2013 and December 2013 97 carers were referred. Of those carers contacted and offered the service, 78 per cent accepted support. The common areas of support wanted were: (i) psychological and emotional support; (ii) support and information about dementia; (iii) support understanding the hospital assessment; and (iv) support with self-care and future decisions. The project aimed to promote a community within the hospital environment for carers to feel valued and well informed.
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Fisher, Emily, Sophie Crawley, Elizabeth L. Sampson, Claudia Cooper, Rebecca Jones, Kanthee Anantapong, and Kirsten Moore. "Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia." Dementia 21, no. 3 (February 7, 2022): 934–56. http://dx.doi.org/10.1177/14713012211066674.
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Background When family carers are more prepared for the end of the life of a person they care for, they report improved bereavement outcomes. Few studies have explored how carers prepare for the death of a person with dementia. We aimed to explore how carers for people with all stages of dementia experience preparing for end of life care and death. Methods This was a mixed methods cross-sectional study. Family carers of people with dementia ( n = 150) completed a structured interview with validated scales, alongside questions about death preparedness and advance decisions. A sub-sample ( n = 16) completed qualitative interviews exploring their experiences of planning for end of life. We fitted logistic regression models to explore associations with preparedness, and thematically analysed qualitative data. Results We addressed practical and emotional preparation separately for 143 participants. Fifty seven percent of participants were very practically prepared for death, while only 29% were very emotionally prepared. Male carers were more likely than female carers to report being very emotionally and practically prepared. Higher engagement with healthcare professionals was associated with feeling very practically prepared; although we found that formal discussions of end of life care issues with healthcare professionals did not impact carers’ feelings of preparation. Higher levels of dementia severity and carer depression were associated with feeling very emotionally prepared. Three qualitative themes related to practical and emotional preparation were identified: (1) ambiguity and uncertainty; (2) support from the system; and (3) how death is perceived by the carer. Conclusions While most carers felt practically prepared for death, emotional preparation was much lower. Further research is needed to understand how engagement with healthcare professionals or other forms of social or emotional support could help carers, particularly female carers, to emotionally prepare for their relative’s death.
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Sriram, Vimal, Crispin Jenkinson, and Michele Peters. "Carers’ experience of using assistive technology for dementia care at home: a qualitative study." BMJ Open 10, no. 3 (March 2020): e034460. http://dx.doi.org/10.1136/bmjopen-2019-034460.
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ObjectiveAssistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers’ experience of using AT in supporting and caring for persons with dementia who live at home.DesignQualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes.SettingCommunity-based within the UK.ParticipantsTwenty-three (14 women, 9 men) adult carers of persons with dementia who have used at least one AT device.ResultsAll participants reported benefiting to varying degrees from using AT. There were 5 themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses.ConclusionsCarers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.
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Oliveira, Deborah, Lidia Sousa, and Aimee Aubeeluck. "What would most help improve the quality of life of older family carers of people with dementia? A qualitative study of carers’ views." Dementia 19, no. 4 (August 4, 2018): 939–50. http://dx.doi.org/10.1177/1471301218791906.
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Older family carers of people with dementia provide a substantial amount of care for people with dementia in the UK. Caregiving can be stressful and burdensome for these individuals, who are also experiencing psychological and physical changes resulting from their own ageing process. However, little is known about what impacts their quality of life, how this can be improved and what we should prioritise. This brief report asks one simple question to older family carers of people living with dementia – “What would most help improve your quality of life as a carer?” Qualitative data were collected from 150 carers who completed an anonymous paper survey during the development and validation of a quality of life tool for use with this population (DQoL-OC). Participants were individuals aged 60 and over and were providing care for a family member with dementia at home in the UK. Carers were recruited from a variety of voluntary organizations, community-based carers’ groups, health services and via online forums. A thematic approach was used to analyse the carers’ comments and three main overarching themes were identified. The quality of life of older family carers can be enhanced by having more time away from caregiving, accessing health and social services that are dementia friendly and by having economic support. Future care, policies and research should aim to address these key areas in order to promote better quality of life for older carers of people with dementia. Further implications for practice, policy and research are discussed.
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Chang, Chern Yi Marybeth, Waqaar Baber, Tom Dening, and Jennifer Yates. "“He Just Doesn’t Want to Get Out of the Chair and Do It”: The Impact of Apathy in People with Dementia on Their Carers." International Journal of Environmental Research and Public Health 18, no. 12 (June 11, 2021): 6317. http://dx.doi.org/10.3390/ijerph18126317.
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Apathy, defined as a lack of motivation, is a prevalent and persistent behavioural and psychological symptom of dementia. Limited research suggests that apathy is associated with increased carer burden, but there are no studies investigating carers’ subjective experiences of apathy. This study aimed to fill this gap and explore the lived experience of apathy in dementia from the perspectives of the people with dementia and their carers. This article reports on the carers’ perspectives. Six dyads of people with dementia and carers participated in semi-structured interviews, which were analysed using interpretative phenomenological analysis. Three superordinate themes were identified: (1) achieving a balance of conflicting emotions—the challenges of apathy led to feelings of guilt, acceptance, and frustration; (2) new roles imposed by caring, which involved taking on new responsibilities and promoting remaining interests of person with dementia; and (3) having a life of one’s own—coping with apathy by talking to others, and spending time away from the caring role. This study highlighted that carers are caught in a struggle between wanting to involve the person with dementia in decisions and finding that they cannot if they want to overcome the hurdle of apathy. Implications of this study suggest that a wider understanding of apathy at a societal level could lead to the provision of a helpful forum for carers to share their experiences.
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Orgeta, Vasiliki, Phuong Leung, Lauren Yates, Sujin Kang, Zoe Hoare, Catherine Henderson, Chris Whitaker, et al. "Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial." Health Technology Assessment 19, no. 64 (August 2015): 1–108. http://dx.doi.org/10.3310/hta19640.
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BackgroundGroup cognitive stimulation therapy programmes can benefit cognition and quality of life for people with dementia. Evidence for home-based, carer-led cognitive stimulation interventions is limited.ObjectivesTo evaluate the clinical effectiveness and cost-effectiveness of carer-delivered individual cognitive stimulation therapy (iCST) for people with dementia and their family carers, compared with treatment as usual (TAU).DesignA multicentre, single-blind, randomised controlled trial assessing clinical effectiveness and cost-effectiveness. Assessments were at baseline, 13 weeks and 26 weeks (primary end point).SettingParticipants were recruited through Memory Clinics and Community Mental Health Teams for older people.ParticipantsA total of 356 caregiving dyads were recruited and 273 completed the trial.InterventioniCST consisted of structured cognitive stimulation sessions for people with dementia, completed up to three times weekly over 25 weeks. Family carers were supported to deliver the sessions at home.Main outcome measuresPrimary outcomes for the person with dementia were cognition and quality of life. Secondary outcomes included behavioural and psychological symptoms, activities of daily living, depressive symptoms and relationship quality. The primary outcome for the family carers was mental/physical health (Short Form questionnaire-12 items). Health-related quality of life (European Quality of Life-5 Dimensions), mood symptoms, resilience and relationship quality comprised the secondary outcomes. Costs were estimated from health and social care and societal perspectives.ResultsThere were no differences in any of the primary outcomes for people with dementia between intervention and TAU [cognition: mean difference –0.55, 95% confidence interval (CI) –2.00 to 0.90;p-value = 0.45; self-reported quality of life: mean difference –0.02, 95% CI –1.22 to 0.82;p-value = 0.97 at the 6-month follow-up]. iCST did not improve mental/physical health for carers. People with dementia in the iCST group experienced better relationship quality with their carer, but there was no evidence that iCST improved their activities of daily living, depression or behavioural and psychological symptoms. iCST seemed to improve health-related quality of life for carers but did not benefit carers’ resilience or their relationship quality with their relative. Carers conducting more sessions had fewer depressive symptoms. Qualitative data suggested that people with dementia and their carers experienced better communication owing to iCST. Adjusted mean costs were not significantly different between the groups. From the societal perspective, both health gains and cost savings were observed.ConclusionsiCST did not improve cognition or quality of life for people with dementia, or carers’ physical and mental health. Costs of the intervention were offset by some reductions in social care and other services. Although there was some evidence of improvement in terms of the caregiving relationship and carers’ health-related quality of life, iCST does not appear to deliver clinical benefits for cognition and quality of life for people with dementia. Most people received fewer than the recommended number of iCST sessions. Further research is needed to ascertain the clinical effectiveness of carer-led cognitive stimulation interventions for people with dementia.Trial registrationCurrent Controlled Trials ISRCTN65945963.FundingThis project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment (HTA) programme and will be published in full inHealth Technology Assessment; Vol. 19, No. 64. See the NIHR Journals Library website for further information.
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Mekala, Shailaja, Suvarna Alladi, Kammammettu Chandrasekar, Safiya Fathima, Claire M.O.'Connor, Colleen McKinnon, Michael Hornberger, Olivier Piguet, John R. Hodges, and Eneida Mioshi. "Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia." Dementia & Neuropsychologia 7, no. 1 (March 2013): 104–9. http://dx.doi.org/10.1590/s1980-57642013dn70100016.
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ABSTRACT There is great need to understand variables behind carer burden, especially in FTD. Carer burden is a complex construct, and its factors are likely to vary depending on the type of dementia, carer characteristics and cultural background. Objective: The present study aimed to compare profiles and severity of carer burden, depression, anxiety and stress in carers of FTD patients in India in comparison to Australia; to investigate which carer variables are associated with carer burden in each country. Methods: Data of 138 participants (69 dyads of carers-patients) from India and Australia (India, n=31; Australia, n=38). Carer burden was assessed with the short Zarit Burden Inventory; carer depression, anxiety and stress were measured with the Depression, Anxiety and Stress-21. Dementia severity was determined with the Frontotemporal Dementia Rating Scale (FTD-FRS), and a range of demographic variables regarding the carer and patient were also obtained. Results: Overall, levels of carer burden were not significantly different across India and Australia, despite more hours delivering care and higher dementia severity in India. Variables associated with burden, however, differed between countries, with carer depression, anxiety and stress strongly associated with burden in India. By contrast, depression, stress, and dementia severity were associated with burden in Australia. Conclusion: This study demonstrated that variables associated with carer burden in FTD differ between cultures. Consequently, cultural considerations should be taken into account when planning for interventions to reduce burden. This study suggests that addressing carers' skills and coping mechanisms are likely to result in more efficacious outcomes than targeting patient symptoms alone.
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Chaaya, Monique, Kieu Phung, Samir Atweh, Khalil El Asmar, Georges Karam, Rosemary Khoury, Lilian Ghandour, et al. "Dementia and family burden of care in Lebanon." BJPsych. International 14, no. 1 (February 2017): 7–9. http://dx.doi.org/10.1192/s2056474000001574.
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The burden on and mental well-being of family carers for the elderly, especially those with dementia, has been well studied in high-income countries and to a lesser extent in the Arab region. Our study of Lebanese carers highlights the importance of considering the psychological well-being of the family carer, and the role of dementia and depression in increasing the burden of care. Psychosocial interventions have produced equivocal results and therefore customised and contextualised interventions need to be researched. Greater understanding of the coping mechanisms used by carers is required and an examination of the positive aspects of caring is warranted.
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Giebel, Clarissa, Caroline Sutcliffe, Frances Darlington-Pollock, Mark A. Green, Asan Akpan, Julie Dickinson, James Watson, and Mark Gabbay. "Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic." International Journal of Environmental Research and Public Health 18, no. 2 (January 14, 2021): 686. http://dx.doi.org/10.3390/ijerph18020686.
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Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.
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Nielsen, T. Rune, Dorthe S. Nielsen, and Gunhild Waldemar. "A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study." Dementia 21, no. 2 (October 3, 2021): 477–88. http://dx.doi.org/10.1177/14713012211046597.
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Background There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer’s health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers’ sense of competence in managing dementia and their mental well-being. Methods A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. Results Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers’ sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. Conclusions The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.
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Rathnayake, Sarath, Wendy Moyle, Cindy Jones, and Pauline Calleja. "mHealth applications as an educational and supportive resource for family carers of people with dementia: An integrative review." Dementia 18, no. 7-8 (April 9, 2018): 3091–112. http://dx.doi.org/10.1177/1471301218768903.
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Family carers encounter several challenges related to caring for people with dementia, and they need support in managing care recipients’ health needs. This study aims to identify, appraise and synthesise the existing evidence on the use of mHealth/smartphone applications as an educational and supportive resource for family carers of people with dementia. An integrative literature review approach was used. Seven databases were searched. The search generated 117 articles, with seven meeting the inclusion criteria. Three categories and their attendant sub-categories emerged from the literature. The categories are ‘carer support’, ‘evaluation strategies’ and ‘barriers and challenges’. mHealth applications appear to be a feasible intervention for family carers of people with dementia despite the limited available research and barriers for their development and implementation. Further research on mHealth applications with strong methodological rigour and more research on mHealth applications as an educational and supportive resource for carers of people with dementia are needed.
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ORPIN, PETER, CHRISTINE STIRLING, SHARON HETHERINGTON, and ANDREW ROBINSON. "Rural dementia carers: formal and informal sources of support." Ageing and Society 34, no. 2 (August 15, 2012): 185–208. http://dx.doi.org/10.1017/s0144686x12000827.
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ABSTRACTPrimary carers provide much of the day-to-day care for community-dwelling people living with dementia (PWD). Maintaining that contribution will require a more in-depth understanding of the primary carer role and the support needs that flow from that role. This study explored patterns of formal and informal support utilisation by people caring for a PWD in a rural-regional context. In-depth semi-structured interviews were conducted with 18 rural primary carers of a PWD and thematically analysed. Participant primary carers' almost total commitment to, and absorption in their role and their assumption of ultimate responsibility for the PWD's wellbeing meant that external social context, such as rurality, became less relevant. Carer networks effectively contracted to those key individuals who were central to supporting them in their caring task. External sources of support were tightly managed with strong boundaries around the provision of direct care to the PWD largely excluding all but professional providers. Primary carers are generally categorised along with other family and friends as informal care. However, in assumingprimaryresponsible for the care and wellbeing for the PWD they effectively become the key care provider, suggesting that it would be productive in both research and practice to treat primary carers as key members of a care partnership alongside professional carers, rather than as adjuncts to formal care and/or another client.