Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK.
Gill Livingston,Gerard Leavey,Monica Manela,Deborah Livingston,Greta Rait,Elizabeth L Sampson,Shilpa Bavishi,Khodayar Shahriyarmolki,Claudia Cooper +8 more
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TLDR
Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them.Abstract:
Objective: To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers. / Design: Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews. / Setting: Community settings in London. / Participants: 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews. / Results: Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity. / Conclusions: The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients’ general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals’ authority to gain patients’ agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia’s previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.read more
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Journal ArticleDOI
Dementia prevention, intervention, and care
Gill Livingston,Gill Livingston,Andrew Sommerlad,Vasiliki Orgeta,Sergi G. Costafreda,Sergi G. Costafreda,Jonathan Huntley,Jonathan Huntley,David Ames,Clive Ballard,Sube Banerjee,Alistair Burns,Jiska Cohen-Mansfield,Claudia Cooper,Claudia Cooper,Nick C. Fox,Laura N. Gitlin,Robert Howard,Robert Howard,Helen C. Kales,Eric B. Larson,Eric B. Larson,Karen Ritchie,Karen Ritchie,Kenneth Rockwood,Elizabeth L Sampson,Quincy M. Samus,Lon S. Schneider,Geir Selbæk,Geir Selbæk,Linda Teri,Naaheed Mukadam +31 more
TL;DR: The Lancet Commission on Dementia Prevention, Intervention, and Care met to consolidate the huge strides that have been made and the emerging knowledge as to what the authors should do to prevent and manage dementia.
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Frontotemporal Dementia An Updated Clinician’s Guide
TL;DR: Today, frontotemporal dementia (FTD) remains one of the most common forms of early-onset dementia, that is, before the age of 65, thus posing several diagnostic challenges to clinicians.
Journal ArticleDOI
A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia
Gill Livingston,Lynsey Kelly,Elanor Lewis-Holmes,Gianluca Baio,Stephen Morris,Nishma Patel,Rumana Z Omar,Cornelius Katona,Claudia Cooper +8 more
TL;DR: The evidence for clinical effectiveness and cost-effectiveness of non-pharmacological interventions for reducing agitation in dementia, considering dementia severity, the setting, the person with whom the intervention is implemented, whether the effects are immediate or longer term, is reviewed.
Journal ArticleDOI
Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies
Frances Bunn,Claire Goodman,Katie Sworn,Greta Rait,Carol Brayne,Louise Robinson,Elaine McNeilly,Steve Iliffe +7 more
TL;DR: A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Journal ArticleDOI
Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial
Gill Livingston,Julie Barber,Penny Rapaport,Martin Knapp,Mark Griffin,Derek King,Debbie Livingston,Catherine J. Mummery,Zuzana Walker,Juanita Hoe,Elizabeth L Sampson,Claudia Cooper +11 more
TL;DR: A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia and the carers’ quality of life improved.
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