Health and Social Care in the Community, 11(6), November 2003, pp.477-485.
Publisher:
Wiley
Explores professional attitudes to family members supporting an older person newly diagnosed with dementia, drawing on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring. It is argued that professional assumptions about family members' roles when dementia is recently recognised among older people expand definitions of carers, but still confirm their instrumental role.
Explores professional attitudes to family members supporting an older person newly diagnosed with dementia, drawing on professional perspectives derived from a series of 24 multidisciplinary workshops held in the UK, analysed using a typology developed by Twigg in 1989. The primary care workers' understanding of carers' needs and circumstances fitted best with Twigg's models of carers as resources and co-workers, but showed limited awareness of carers' responses and attitudes to caring. It is argued that professional assumptions about family members' roles when dementia is recently recognised among older people expand definitions of carers, but still confirm their instrumental role.
Journal of Dementia Care, 12(5), September 2004, pp.22-24.
Publisher:
Hawker
Argues that apparent problems in recognising dementia are stages in a process of growing awareness, challenging the perception that early recognition is a problem too big to deal with. Emphasises that people with dementia and their supporters have a key role in developing positive messages about early recognition approaches. Discusses components for change, human factors, skills and resources, and opportunities and threats. Concludes positive outcomes may depend on a variety of factors: local leadership and initiatives, public involvement, division of labour, new rule interpretation, and time and resources planning. Shifting attention from 'problems' to promoting change processes is a joint task.
Argues that apparent problems in recognising dementia are stages in a process of growing awareness, challenging the perception that early recognition is a problem too big to deal with. Emphasises that people with dementia and their supporters have a key role in developing positive messages about early recognition approaches. Discusses components for change, human factors, skills and resources, and opportunities and threats. Concludes positive outcomes may depend on a variety of factors: local leadership and initiatives, public involvement, division of labour, new rule interpretation, and time and resources planning. Shifting attention from 'problems' to promoting change processes is a joint task.
Subject terms:
primary care, assessment, carers, dementia, diagnosis;
Dementia: the International Journal of Social Research and Practice, 16(1), 2017, p.108–118.
Publisher:
Sage
As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.
(Publisher abstract)
As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers’ perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers’ experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. ‘Direct food-related Information’, covers written material, training, ‘Direct food-related informal support’: lunch clubs, ‘Indirect non-food related formal support services’ covers respite services and domestic help at home. Finally ‘no services required’ covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.
(Publisher abstract)
Subject terms:
dementia, carers, information services, informal care, nutrition, needs;
King's College London. Social Care Workforce Research Unit
Publication year:
2016
Pagination:
38
Place of publication:
London
This analysis attempts to clarify the different positions taken by those with an interest in dementia, the reasons why they adopted them, their relation to both medical and social science, and their consequences for people with dementia, and also for carers and services. It explores the issues using four thesis which are: Dementia is a big and expensive problem and something must be done about
(Edited publisher abstract)
This analysis attempts to clarify the different positions taken by those with an interest in dementia, the reasons why they adopted them, their relation to both medical and social science, and their consequences for people with dementia, and also for carers and services. It explores the issues using four thesis which are: Dementia is a big and expensive problem and something must be done about it; Dementia is a disease process that deserves a medical solution; The medical solution is undermined by failure to recognise dementia, which must be put right; The care of people with dementia is primarily an individual or family responsibility. For each thesis, the report looks at: who adopts that stance and why; provides a counter argument to the thesis; and provides a synthesis that attempts to resolve the split between thesis and counter-thesis. The report argues that dementia should be understood more as a disability, rather than a disease, with a greater emphasis placed on supporting those who care for people with the condition. In its conclusion the report looks at what this might mean for a refreshed Dementia Strategy 2.0.
(Edited publisher abstract)
Subject terms:
dementia, families, carers, medical model, social model, medication, screening;
Objectives: Family carers of people with dementia often experience difficulty in accessing information, services and adequate support. Admiral Nurses, registered nurses specialising in dementia, provide holistic and person-centred support to families living with dementia. This study assessed the effectiveness of the Admiral Nurses' approach from the perspective of family carers who had accessed their service.
Method: A questionnaire was developed with input from family carers and Admiral Nurses and questions were based around the Admiral Nursing Standards. 685 questionnaires were sent out in total to carers in receipt of care from three different regions in England.
Results: 207 questionnaires (30.2% response rate) were analysed. Admiral Nurses' knowledge and skills and their interventions were found 57, 31% and n = 63, 33.9%, respectively) of respondents finding Admiral Nurses not helpful, whilst 24.6% (n = 46) thought so in relation to care coordination. A higher number of contacts with Admiral Nurses (5+) and carer gender (female) were significant predictors of carers' satisfaction.
Conclusion: Whilst some aspects of supporting carers are performed less well from the carers' perspective, overall family carers in receipt of Admiral Nursing support perceived their family-centred approach as helpful/effective.
(Publisher abstract)
Objectives: Family carers of people with dementia often experience difficulty in accessing information, services and adequate support. Admiral Nurses, registered nurses specialising in dementia, provide holistic and person-centred support to families living with dementia. This study assessed the effectiveness of the Admiral Nurses' approach from the perspective of family carers who had accessed their service.
Method: A questionnaire was developed with input from family carers and Admiral Nurses and questions were based around the Admiral Nursing Standards. 685 questionnaires were sent out in total to carers in receipt of care from three different regions in England.
Results: 207 questionnaires (30.2% response rate) were analysed. Admiral Nurses' knowledge and skills and their interventions were found helpful by 81.5% and 82.6% of respondents, respectively (mean values). Respondents also rated them effective in developing rapport (96.5%, mean value) and recognising and supporting the needs of the dyad (85.8%, mean value). More varied views were expressed in relation to activities and stimulation for the person with dementia, and to advice around medications and their effects, with around a third (n = 57, 31% and n = 63, 33.9%, respectively) of respondents finding Admiral Nurses not helpful, whilst 24.6% (n = 46) thought so in relation to care coordination. A higher number of contacts with Admiral Nurses (5+) and carer gender (female) were significant predictors of carers' satisfaction.
Conclusion: Whilst some aspects of supporting carers are performed less well from the carers' perspective, overall family carers in receipt of Admiral Nursing support perceived their family-centred approach as helpful/effective.
(Publisher abstract)
Subject terms:
informal care, user views, carers, service provision, service users, dementia, families, nurses, person-centred care;
Dementia: the International Journal of Social Research and Practice, 13(1), 2014, pp.111-119.
Publisher:
Sage
Primary care is ideally placed to recognise and manage dementia and yet dementia can be overlooked or misattributed by primary care practitioners and is underdiagnosed. This might be explained by a lack of formal training in the diagnosis of dementia combined with a reluctance to diagnose due to its associated stigma. This paper describes focus group work with service users, carers and health
(Publisher abstract)
Primary care is ideally placed to recognise and manage dementia and yet dementia can be overlooked or misattributed by primary care practitioners and is underdiagnosed. This might be explained by a lack of formal training in the diagnosis of dementia combined with a reluctance to diagnose due to its associated stigma. This paper describes focus group work with service users, carers and health professionals, conducted to develop an educational intervention for primary care promoting person-centred responses to people experiencing cognitive decline and dementia. Data was analysed thematically and four themes emerged: Reframing dementia as cognitive decline (Individual level); triggers for the recognition of dementia (Practitioner level); engaging the whole primary care team (Practice level); the relationship between primary and secondary care (Service level). Findings are discussed in the context of their contribution to challenging attitudes to dementia in primary care and the positive aspects of person-centred primary care for dementia.
(Publisher abstract)
Subject terms:
primary care, dementia, person-centred care, education, training, focus groups, carers, service users, health professionals;
Research Policy and Planning, 23(3), 2005, pp.165-173.
Publisher:
Social Services Research Group
Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers and people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carers' own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers and people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carers' own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
Subject terms:
long term care, mental health problems, older people, quality of life, social services, stress, carers, cost effectiveness, depression, health;
Part of a series of good practice guides produced by the Bradford Dementia Group at the University of Bradford, this practice and training guide is written with the needs of health and social care professionals working with people with dementia in mind. Drawing together theoretical considerations and examples of good practice, the guide explains how to: make the initial diagnosis (including guidelines for distinguishing dementia from depression); convey the diagnosis to the person with dementia and their family (outlining the use of cognitive tests and the role of anti dementia drugs); support the user through lifestyle adjustments; care for people with dementia as it progresses, both in their own homes and in care home settings. The guide is illustrated with case studies and includes a chapter on understanding and responding to the needs of the carer and the effect on their own health as well as outlining the shared knowledge base required by health and social care practitioners.
Part of a series of good practice guides produced by the Bradford Dementia Group at the University of Bradford, this practice and training guide is written with the needs of health and social care professionals working with people with dementia in mind. Drawing together theoretical considerations and examples of good practice, the guide explains how to: make the initial diagnosis (including guidelines for distinguishing dementia from depression); convey the diagnosis to the person with dementia and their family (outlining the use of cognitive tests and the role of anti dementia drugs); support the user through lifestyle adjustments; care for people with dementia as it progresses, both in their own homes and in care home settings. The guide is illustrated with case studies and includes a chapter on understanding and responding to the needs of the carer and the effect on their own health as well as outlining the shared knowledge base required by health and social care practitioners.
Subject terms:
multidisciplinary services, older people, primary care, social care provision, carers, care homes, dementia, health care, good practice;
Learning in Health and Social Care, 3(1), March 2004, pp.5-16.
Publisher:
Blackwell
Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups' solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners' own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.
Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups' solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners' own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.
Subject terms:
interprofessional relations, older people, social work, social work education, social workers, adult education, adults, carers, dementia, families, health education;