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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.

Epilepsy: a public health imperative

WORLD HEALTH ORGANISATION (WHO)
2019

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This report is the first global report on epilepsy summarising the available evidence on the burden of epilepsy and the public health response required at global, regional and national levels.

This report is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. It is time to highlight epilepsy as a public health imperative, to strongly encourage investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research.

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" 

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."

2016 Synthesis of Voluntary National Reviews

DIVISION FOR SUSTAINABLE DEVELOPMENT DEPARTMENT OF ECONOMIC AND SOCIAL AFFAIRS - UNDESA
2016

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"The 2016 meeting of the High-Level Political Forum (HLPF) took place from 11 to 20 July 2016 at the United Nations Headquarters in New York. Twenty-two countries presented voluntary national reviews (VNRs) of the implementation of the 2030 Agenda, and particularly the sustainable development goals (SDGs), over a day and a half during the Ministerial Segment of the HLPF under the auspices of the Economic and Social Council (ECOSOC). This report synthesizes some of the findings of the VNRs, drawing primarily from the written reports and executive summaries of the majority of countries. It uses a theme based analysis drawn largely from the voluntary common guidelines contained in the Annex to the Secretary-General’s report on critical milestones towards coherent, efficient and inclusive follow-up and review at the global level. The report examines reporting countries’ efforts to implement the 2030 Agenda, including challenges, gaps, achievements and lessons learned." 

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

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 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

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

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

Fighting against epilepsy in Rwanda : an efficient patient-centred experience

FINEL, Elodie
March 2012

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This document presents a learning-from-experience "capitalisation’’ process on Handicap International’s epilepsy project in Rwanda. It includes 4 parts: (1) Principles & Benchmarks which sets the framework including main concepts, definitions and intervention context (2) Intervention methods which detail the main activities monitoring the project and its tools (3) Focus which presents the community-based approach and provides a deeper look into the know-how and good practices developed through this approach (4) Results which provides the limitations and recommendations found during the capitalisation process to different stakeholders
SD/LL 04

World Health Statistics 2012

WORLD HEALTH ORGANISATION (WHO)
2012

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"World Health Statistics 2012 contains WHO’s annual compilation of health-related data for its 194 Member States, and includes a summary of the progress made towards achieving the health-related Millennium Development Goals (MDGs) and associated targets. This year, it also includes highlight summaries on the topics of noncommunicable diseases, universal health coverage and civil registration coverage"
Note: The summary brochure, full report, report in English by section, the indicator compendium and printed copy order forms are available from the link above

Fighting against epilepsy in Rwanda : an efficient patient-centred experience

FINEL, Elodie
2012

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This brief provides a summary of the learning-from-experience process on Handicap International's project "Promoting access to medical care, ensuring the school, social, family and community integration of epileptic people in Rwanda." Strategy and intervention methods are highlighted along with the community-based approach
Brief SD/LL 04

Non-Communicable diseases in an ageing world : a report from the International Longevity Centre UK, HelpAge International and Alzheimer’s Disease International lunch debate

BAMFORD, Sally-Marie
SERRA, Valentina
July 2011

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This report, based on the discussion and recommendations from the expert meeting, presents information about the need for a life-course focus on prevention, treatment, management and related care issues on NCDs and for dementia to be addressed as a global priority for action. "The first part of the report highlights salient policy and political issues on the NCD question and summarises some of the key international developments in this regard. The latter section of the report provides a summary of the presentation by Professor Martin Prince, and identifies some of the key themes which emerged from the meeting"
Expert stakeholder lunch meeting
London, UK
4 May 2011

CVD project evaluation : baseline diabetes study, Davao, Philippines 2010

PILLERON, Sophie
June 2011

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This study gathered baseline data for the CVD Project evaluation. "This study also concerned gathering information on the nature of diabetes and common practices in diabetes management and care, to improve project implementation strategy and data on promoting health care services in the community...This study was the first part of a quasi-experimental before-after here-there study conducted in 10 intervention barangays and 5 control barangays of Davao City. The study population consisted of people with diabetes aged 20 years and above who had visited the Barangay Health Centre and had proof of a doctor’s diagnosis for diabetes mellitus or proof of a relative-to-diabetes medicine prescription...Despite its limitations, this study provides a first insight on the people living with diabetes in Davao City. With 72% of diabetics having uncontrolled glycaemia, this study shows the relevance of the CVD project. As a baseline, this study provides comparison elements for the 2013 survey in order to test effectiveness of the CVD project with the percentage of diabetics with HbA1c<6.5% as effectiveness criterion"
DS/RD 01

Global status report on noncommunicable diseases 2010

WORLD HEALTH ORGANIZATION (WHO)
2011

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"This report sets out the statistics, evidence and experiences needed to launch a more forceful response to the growing threat posed by noncommunicable diseases. While advice and recommendations are universally relevant, the report gives particular attention to conditions in low- and middle-income countries, which now bear nearly 80% of the burden from diseases like cardiovascular disease, diabetes, cancer and chronic respiratory diseases. The health consequences of the worldwide epidemic of obesity are also addressed"

World alzheimer report 2010 : the global economic impact of dementia

WIMO, Anders
PRINCE, Martin
2010

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This report provides a global picture of the economic impact of Alzheimer's disease and dementia. "The report includes an estimate of the worldwide cost of dementia, including direct medical costs, direct non-medical costs and costs of informal (family) care. The estimates are broken down by world region and include analysis of the differences between low and high income countries. The report also contains important policy recommendations and makes clear to key decision-makers that doing nothing is not an option"

IDF diabetes atlas

UNWIN, Nigel
et al
2010

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This report presents evidence that diabetes is a global epidemic. It contains comprehensive information in the following sections: What is diabetes?; The Global Burden; Regional Overviews; Diabetes and Development; Linking Local to Global; Resources and Solutions; References; Additional Resources. This report is useful for health professionals, scientists, economists, policy-makers, and national and international agencies

Diabetes prevention and control projects in countries with limited resources|Lessons from experience : know-how analysis

BONARERI, Elizabeth
et al
December 2009

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This analysis paper presents the ‘know-how’ acquired by Handicap International in its diabetes prevention and control projects. It provides six practical know-how analysis sections focusing upon stakeholder mobilisation, services in communities, the decentralisation of diabetes care, diabetes clubs for persons with diabetes, supporting associations of persons with diabetes and conducting a study on a disabling disease project. This report would be useful to anyone interested in diabetes prevention and control in developing countries

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