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Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Kazakhstan: Education Barriers for Children with Disabilities

HUMAN RIGHTS WATCH
March 2019

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The video reports that most children with disabilities in Kazakhstan are not getting a quality, inclusive education and that although the Kazakh government has taken some important steps to better protect the rights of children with disabilities, much more needs to be done to ensure equal access to education for all children.

Cases of children with Downs Syndrome, autism and arthritis are highlighted.

Diabetes and rehabilitation. Factsheet.

HANDICAP INTERNATIONAL
March 2017

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Diabetes is the 9th most common cause of years lived with disability. Diabetes is a chronic disease that occurs either when the pancreas does not produce enough insulin or when the body cannot effectively use the insulin it produces. This causes an increased concentration of glucose in the blood (hyper glycaemia). There are three types - Type 1, Type 2 and gestational. Common impairments and activity limitations are reported including: neuropathy; peripheral vascular disease; retinopathy; kidney complications; stroke and depression. Different examples of rehabilitation in the care continuum are provided. A case study of diabetes in the Philippines is cited.

HIV & AIDS and rehabilitation. Factsheet.

HANDICAP INTERNATIONAL
March 2017

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The Human Immunodeficiency Virus (HIV) is a virus that makes the immune system collapse, making a person totally defenceless to infections. A person living with HIV may experience episodic and/or chronic impairments. These may result from illness and/or from treatment side effects, in particular: general fatigue and weight loss; neurological disorders; mental and cognitive disorders such as dementia; and joint and muscle problems. Different examples of rehabilitation across the care cycle are given. A case study in India is provided.
 

Cardiovascular diseases (CVD) and rehabilitation. Factsheet

HANDICAP INTERNATIONAL
March 2017

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Cardiovascular disease (CVD) refers to conditions that affect the heart and blood vessels. Most commonly this includes coronary heart disease (heart attacks), cerebrovascular disease (stroke) or raised blood pressure (hypertension). A stroke occurs when a blood clot (ischaemia) or a bleed (haemorrhage) disrupts the blood supply to part of the brain, starving that area of oxygen. Stroke is a leading cause of serious long-term disability. Common impairments and activity limitations from cardiovascular diseases are hemiplegia, word forming difficulties and slurring of speech, cognitive function, depression, sensory loss and shortness of breath. Different examples of rehabilitation in the care continuum are given. A case study of stroke in Nepal is provided. 

Impact of cross-border healthcare on persons with disabilities and chronic conditions

INTERNATIONAL FEDERATION FOR SPINA BIFIDA AND HYDROCEPHALUS
February 2017

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"The International Federation for Spina Bifida and Hydrocephalus (IF) together with the European Disability Forum (EDF) and the European Patients Forum (EPF) conducted a survey among their networks to assess the impact of the Directive 2011/24/EU on the application of patients’ rights in cross border healthcare (crossborder healthcare Directive) on persons with disabilities and chronic conditions in the EU. The findings of the survey showed low awareness and low use of the Directive. A vast majority of 85% has never used crossborder healthcare even though 69% of respondents might have used it had they received information about it. Approximately three quarters (77%) of respondents have never heard about the Directive" 

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

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This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

Innovations In Dementia

ROUTLEDGE, Martin
SANDERSON, Helen
BAILEY, Gill
October 2016

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This book offers concrete ideas and examples to those interested in driving a radically different approach to supporting people with dementia and their families. "We have explored a number of approaches with people who have been leading their development. We have been keen to look at both approaches that emerge from working directly to improve support for people with dementia and others that have different roots, but we think are potentially very transferable. None of the approaches is yet being used at any significant scale". Discussions and examples are all UK based. There is an introduction detailing current problems and issues with care and support for people with dementia. 10 approaches are described for housing and support, 4 concerned with enabling people to have good days and 7 associated with enabling people to connect with their community. 

Responding to the Syrian health crisis : the need for data and research

COUTTS, Adam
et al
March 2015

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This article assesses the impact of the war in Syrian the context of the health system and neighbouring countries and the rise in non-communicable diseases. The authors advocate that  urgent policy and research attention needs to be given to the generation of timely and high-quality evidence on the effectiveness of the humanitarian health response, the capacity of health systems within Syria, and the issue of non-communicable diseases among internally displaced people and refugees

The Lancet, Vol 3, Issue 3, PE8-E9, Mar 01, 2015

 

 

World report on ageing and health

WORLD HEALTH ORGANIZATION (WHO)
2015

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This report lays out framework for the development of new strategies to bring the right programmes, information, and services to an ageing international community. The report focuses on policy development, healthy ageing and health in old age, health systems and long – term care systems.  The report concludes by presenting a series of recommended next steps to realising the vision of a world that is more friendly to an ageing population

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The interaction of malnutrition and neurologic disability in Africa

KERAC, Marko
et al
March 2014

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Malnutrition and neurodisability are both major public health problems in Africa. This review highlights key areas where they interact. These areas of interaction include maternal malnutrition, toxin ingestion, macronutrient malnutrition and micronutrient deficiencies - all of which cause or are caused by neurodisability, The article concludes that there is an urgent need for nutrition and disability programmes to work more closely together

Seminars in Pediatric Neurology, Volume 21, Issue 1

Assessment of neurodisability and malnutrition in children in Africa

GLADSTONE, Melissa
MALLEWA, Mac
ALUSINE JALLOH, Alhaji
VOSJUIKL, Wieger
POSTELS, Douglas
GROCE, Nora
KERAC, Marco
MOLYNEUX, Elizabeth
March 2014

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Neurodevelopmental delay, neurodisability, and malnutrition interact to contribute a significant burden of disease in global settings. Assessments which are well integrated with plans of management or advice are most likely to improve outcomes. Assessment tools used in clinical research and programming to evaluate outcomes include developmental and cognitive tools that vary in complexity, sensitivity, and validity as well as the target age of assessment. Few tools have been used to measure socioemotional outcomes and fewer to assess the disabled child with malnutrition. There is a paucity of tools used clinically which actually provide families and professionals with advice to improve outcomes. Brain imaging, electroencephalography, audiology, and visual assessment can also be used to assess the effect of malnutrition on brain structure and function. The interaction of neurodisability and malnutrition is powerful, and both need to be considered when assessing children.

Seminars in Pediatric Neurology, Child Neurology in Africa, Volume 21, Issue 1, March 2014, Pages 50–57

An evidence review of research on health interventions in humanitarian crises

BLANCHET, Karl
et al
November 2013

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This report presents a review of the evidence base of public health interventions in humanitarian crises by assessing the quantity and quality of intervention studies, rather than measuring the actual effectiveness of the intervention itself.  It notes an increase in quality and volume of evidence on health interventions in humanitarian crises and recognises that evidence remains too limited, particularly for gender-based violence (GBV) and water, sanitation and hygiene (WASH). This report identifies a number of common needs across all areas, namely more evidence for the effectiveness of systems and delivery, better developed research methods, and more evidence on dispersed, urban and rural populations, on ensuring continuity of care and measuring and addressing health care needs in middle-income settings (particularly NCDs)

Note: Use links on the left hand side of the webpage to access either the full report, the executive summary, or the individual chapters arranged by health topic

Sustaining human development : addressing NCDs and disability across the lifecourse

THE NCD ALLIANCE
et al
2013

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This report explores three interconnected global trends — a growing burden of non-communicable diseases (NCDs), the rising prevalence of disability, and changing global population demographics (including rapidly ageing populations). The report highlights that there issues were collectively neglected as policy priorities during the era of the Millennium Development Goals (MDGs). It stresses that the unique opportunity to ensure a future framework that fully integrates NCDs, that goals and targets drive progress for all people including persons with disabilities, and that a lifecourse and rights-based approach underpins all goals and targets to ensure no one is left behind

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