Responding to the financial abuse of people with dementia: a qualitative study of safeguarding experiences in England

Manthorpe, Jill; Samsi, Kritika; Rapaport, Joan

doi:10.1017/s1041610212000348

Cited by 32 publications

(23 citation statements)

References 28 publications

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“…Whilst such involvement acknowledges that good familial and social networks certainly shape the perception of what is best for incapable patients (Keywood, 2003) -and therefore who better to help make these judgements than the older person's family members and close friends? -cautionary lessons from practice suggest that an over-reliance on relatives to safeguard the rights of incapacitated adults can sometimes lead to an erosion of the rights of incapable people and occasionally to their financial and physical abuse (Selwood and Cooper, 2009;Boyle, 2011;Bopp and Coleson, 1996;Keywood, 2003;Manthorpe, Samsi and Rapaport, 2012 (Redley, Clare, Luke and Holland, 2009) These concerns are echoed by Keywood, who identifies the difficulties relatives face accessing health and social care services when they are untrained or unsupported in that role (Keywood, 2003). Our own observations, albeit from a limited study carried out in a specific setting, suggest that family and close friends also struggle to deal with the emotional burdens associated with discharge planning (Stoller and Pugliesi, 1988) and lack timely information to make well-informed decisions about placement choices for patients at crucial planning meetings (Redley, Clare, Luke and Holland, 2009).…”

Section: Discussionmentioning

confidence: 99%

A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales

Emmett¹,

Poole²,

Bond³

et al. 2014

International Journal of Law, Policy and the Family

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ABSTRACT:In general hospitals, decisions are routinely made by health and social care professionals to discharge older people with dementia, who lack capacity, into long-term institutional care. There are few independent procedural safeguards that monitor how those professional 'best interests' decisions are made. Instead there is an assumption, implied by the Mental Capacity Act 2005 (MCA), which governs decision-making on behalf of incapacitated adults in England and Wales, that relatives will act as informal caretakers of patients' interests and will challenge professional decisions where necessary. This article examines whether this is the case in practice and the factors that may prevent relatives from carrying out this safeguarding role effectively. Our findings stem from a qualitative (ethnographic) study which captured observational data on acute and rehabilitation hospital wards in two hospitals within two NHS healthcare trusts in the North East of England. Our results show that relatives struggled to safeguard the rights of incapacitated patients with dementia when professional residence capacity and best-interests decisions were made about living arrangements and relatives were often ill-equipped or unsuitable to carry out this safeguarding role. Without better information-sharing and more robust independent procedural safeguards in the MCA, the rights of older patients with dementia are not being adequately protected during the hospital discharge process.

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Section: Discussionmentioning

confidence: 99%

A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales

Emmett¹,

Poole²,

Bond³

et al. 2014

International Journal of Law, Policy and the Family

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“…270 One exception to this was that many participants at time 2 were aware of the importance of financial planning and that they could promote understanding of this among their clients or service users. [265][266][267] This confidence was obvious about end-of-life care planning, except among care home managers who described undertaking such discussion with residents on moving into the home, but largely without reference to the MCA.…”

Section: Interpretation Of the Study Findings In Light Of Previous Rementioning

confidence: 99%

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Iliffe

Wilcock

Drennan

et al. 2015

Programme Grants for Applied Research

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BackgroundThe needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings.ObjectivesThe EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005.DesignMixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects.SettingGeneral practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network.ParticipantsPeople with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff.Main outcome measuresDementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia.ResultsAn educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia.ConclusionsA tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005.Trial registrationEVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159.FundingThis project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research.

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“…While research has shown that practitioners have some ability to identify abuse in extreme cases, they are less able to do so in more ambiguous situations [6]. They have been found to be not sufficiently alert to the warning signs of financial abuse [7]. Practitioners themselves have reported that they feel they lack the knowledge to detect elder abuse [8].…”

Section: Introductionmentioning

confidence: 99%

Educating novice practitioners to detect elder financial abuse: a randomised controlled trial

et al. 2014

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BackgroundHealth and social care professionals are well positioned to identify and intervene in cases of elder financial abuse. An evidence-based educational intervention was developed to advance practitioners’ decision-making in this domain. The objective was to test the effectiveness of a decision-training educational intervention on novices’ ability to detect elder financial abuse. The research was funded by an E.S.R.C. grant reference RES-189-25-0334.MethodsA parallel-group, randomised controlled trial was conducted using a judgement analysis approach. Each participant used the World Wide Web to judge case sets at pre-test and post-test. The intervention group was provided with training after pre-test testing, whereas the control group were purely given instructions to continue with the task. 154 pre-registration health and social care practitioners were randomly allocated to intervention (n78) or control (n76). The intervention comprised of written and graphical descriptions of an expert consensus standard explaining how case information should be used to identify elder financial abuse. Participants’ ratings of certainty of abuse occurring (detection) were correlated with the experts’ ratings of the same cases at both stages of testing.ResultsAt pre-test, no differences were found between control and intervention on rating capacity. Comparison of mean scores for the control and intervention group at pre-test compared to immediate post-test, showed a statistically significant result. The intervention was shown to have had a positive moderate effect; at immediate post-test, the intervention group’s ratings had become more similar to those of the experts, whereas the control’s capacity did not improve. The results of this study indicate that the decision-training intervention had a positive effect on detection ability.ConclusionsThis freely available, web-based decision-training aid is an effective evidence-based educational resource. Health and social care professionals can use the resource to enhance their ability to detect elder financial abuse. It has been embedded in a web resource at http://www.elderfinancialabuse.co.uk.

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Responding to the financial abuse of people with dementia: a qualitative study of safeguarding experiences in England

Cited by 32 publications

References 28 publications

A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales

A Relative Safeguard? The Informal Roles that Families and Carers Play when Patients with Dementia are Discharged from Hospital into Care in England and Wales

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Educating novice practitioners to detect elder financial abuse: a randomised controlled trial

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