The abuse of older people: An evolution of the care management model and the impact of anti-discriminatory practice

Hargreaves, Susan; Hughes, Beverley

doi:10.1080/09503159608412567

Cited by 7 publications

(3 citation statements)

References 2 publications

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“…Currently, there are no curative treatments for the myopathy or FTD component of the disease. Paget disease of bone is responsive to treatment with bisphosphonates [27,28] therefore early diagnosis could prevent advanced stages of PDB in at-risk individuals with VCPassociated disease. Because of the overlapping pathology of VCP disease, its study has led to dramatic progress in understanding the pathology of common related disorders in which TDP-43 is a major component of inclusions.…”

Section: Introductionmentioning

confidence: 99%

A cross-sectional analysis of clinical evaluation in 35 individuals with mutations of the valosin-containing protein gene

Plewa

Surampalli

Wencel

et al. 2018

Neuromuscular Disorders

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Inclusion body myopathy (IBM) associated with Paget disease of the bone and frontotemporal dementia or IBMPFD is an autosomal dominant degenerative disorder caused by mutations in the valosin-containing protein (VCP) gene. We aim to establish a detailed clinical phenotype of VCP disease amongst 35 (28 affected individuals, 7 presymptomatic gene carriers) individuals versus 14 unaffected first-degree relatives in 14 families to establish useful biomarkers for IBMPFD and identify the most meaningful tests for monitoring disease progression in future clinical trials. Comprehensive studies included the Inclusion Body Myositis Functional Rating Scale (IBMFRS) and fatigue severity scale questionairres, strength measurements using the Manual Muscle Test with Medical Research Council (MRC) scales, hand-held dynamometry using the microFET and Biodex dynamometers, 6 minute walk test (6MWT), and pulmonary function studies. Strong correlation was observed between the IBMFRS and measurements of muscle strength with dynamometry and the other functional tests, indicating that it may be utilized in long-term follow-up assessments due to its relative simplicity. This cross-section study represents the most comprehensive evaluation of individuals with VCP disease to date and provides a useful guide for evaluating and possible monitoring of muscle weakness and pulmonary function progression in this unique cohort of individuals.

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Section: Introductionmentioning

confidence: 99%

A cross-sectional analysis of clinical evaluation in 35 individuals with mutations of the valosin-containing protein gene

Plewa

Surampalli

Wencel

et al. 2018

Neuromuscular Disorders

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“…PDB is responsive to treatment with bisphosphonates (Langston & Ralston, 2004; Siris, 1996), but there are currently no curative treatments for myopathy, FTD or other features.…”

Section: Introductionmentioning

confidence: 99%

Psychological Impact of Predictive Genetic Testing in VCP Inclusion Body Myopathy, Paget Disease of Bone and Frontotemporal Dementia

Surampalli

Khare

Kubrussi

et al. 2015

Journal of Genetic Counseling

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Inclusion Body Myopathy associated with Paget’s disease of Bone and Fronto-temporal Dementia, also known as multisystem proteinopathy is an autosomal dominant, late onset neurodegenerative disorder caused by mutations in Valosin containing protein (VCP) gene. This study aimed to assess uptake and decision making for predictive genetic testing and the impact on psychological well-being. Individuals who had participated in the gene discovery study with a 50% a priori risk of inheriting VCP disease were sent a letter of invitation offering genetic counseling and testing and were also invited to participate in this psychosocial study. A total of 102 individuals received an invitation and 33 individuals participated in genetic counseling and testing (32.3%) with 29 completing baseline questionnaires. Twenty completed the follow-up post-test Hospital Anxiety and Depression Scale questionnaire including 13 who had tested positive. Mean risk perception at baseline was 50.1%. Reasons for testing included planning for the future, relieving uncertainty, informing children and satisfying curiosity. At baseline, one quarter of the participants had high levels of anxiety. However, scores were normal one year following testing. In this small cohort, one third of individuals at 50% risk chose pre-symptomatic testing. Although one quarter of those choosing testing had high anxiety at baseline, this was not evident at follow-up.

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“…She does, however, allow an exception, when an individual is either at very grave risk or severely mentally impaired. Hargreaves and Hughes (1996) note that older people are adults and that their rights to selfdetermination, including the right to refuse intervention, therefore demands a different framework from that applied to children. They comment that some professionals appear to view self-determination as more of an inconvenience than a right.…”

Section: Introductionmentioning

confidence: 99%

Evaluating self‐determination: an adult protection case study

Preston‐Shoot

2001

The Journal of Adult Protection

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Self‐determination is widely regarded as a core social work value and as central to work in adult protection. However, it is not unproblematic and raises difficult questions about how to balance empowerment and protection, or rights and risks. Inter‐agency procedures and the recent publication of policy guidance may reflect these difficult questions rather than assist practitioners and managers to resolve practice dilemmas they encounter.

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The abuse of older people: An evolution of the care management model and the impact of anti-discriminatory practice

Cited by 7 publications

References 2 publications

A cross-sectional analysis of clinical evaluation in 35 individuals with mutations of the valosin-containing protein gene

A cross-sectional analysis of clinical evaluation in 35 individuals with mutations of the valosin-containing protein gene

Psychological Impact of Predictive Genetic Testing in VCP Inclusion Body Myopathy, Paget Disease of Bone and Frontotemporal Dementia

Evaluating self‐determination: an adult protection case study

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