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Forgotten in a Crisis Addressing Dementia in Humanitarian Response Forgotten in a Crisis Addressing Dementia in Humanitarian Response Forgotten in a Crisis Addressing Dementia in Humanitarian Response Forgotten in a Crisis Addressing Dementia in Humanitarian Response Alzheimer’s Pakistan A Forgotten in a Crisis Addressing Dementia in Humanitarian Response About the authors For this report, the Global Alzheimer’s & Dementia Action International Rescue Committee – Lilian Kiapi and Gemma Alliance, Alzheimer’s Disease International and Alzheimer’s Lyons; Inter-Agency Standing Committee – Dr Anita Marini Pakistan have worked in partnership, investigating ways (Consultant); NCD Alliance – Jessica Beagley and Katie humanitarian emergency responses can protect and support Cooper (consultant); Geneva NGO Committee on Ageing – people living with dementia. Silvia Perel-Levin; Puerto Rico House of Representatives – Luis Vega Ramos; St Maarten Alzheimer Association – The Global Alzheimer’s & Dementia Action Alliance (GADAA) Dr Raymond Jessurun; The Guardian – Amanda Holpuch; is an international network of civil society organisations Tokyo Metropolitan Institute of Gerontology – Dr Shuichi championing global action on dementia. The GADAA network Awata; United Nations High Commissioner for Refugees – connects a broad spectrum of INGOs including international Vincent Kahi and Peter Ventevogel; University of California – development organisations, gender-equality groups, health- Dr Tala Al-Rousan; World Health Organization – Dr Katrin focused NGOs and disability rights champions. Demonstrating Seeher and Dr Fahmy Hanna; United Kingdom Department how dementia intersects other civil society agendas such as of Health and Social Care – Dilbinder Dhillon; World development, human rights, disability, older people, women, Hospice and Palliative Care Alliance – Stephen Connor. health, and humanitarian. Alzheimer’s Society, Alzheimer’s Disease International, Age International and Dementia Views expressed in this report are not necessarily those Alliance International form the GADAA Steering Committee. of GADAA member organisations. Alzheimer’s Disease International (ADI) is the international Design: Baker Vale federation of Alzheimer associations around the world, in official Front cover image: Dr Yasmin Rashid conducting a medical relations with the World Health Organization. Each member is clinic for people with dementia in a camp during 2010 floods. the Alzheimer association in their country who support people (© Hussain Jafri) living with dementia and their families. Copyright © Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Pakistan is the national organisation of Alzheimer’s Alzheimer’s Disease International, and Alzheimer’s Pakistan and related dementias. The main objective of this non-government community organisation is to work towards the welfare of Published: May, 2019 people living with dementia and their care givers. Methodology & limitations The authors are grateful for additional content, guidance and peer review support provided by network members and leading This report contributes to a growing body of work addressing humanitarian organisations working on intersecting issues. disability in humanitarian settings. In this report, the first to specifically address dementia in humanitarian settings, we Authors: Sherena Corfield, Amy Little and Lizzie Gerrard – seek to address the initial impact of an emergency on the Global Alzheimer’s & Dementia Action Alliance. lives of people living with dementia and the role actors play Acknowledgments: Many thanks to the following people in the humanitarian setting. This report draws on the results for their invaluable contributions and advice throughout the of a systematic desk-based literature review of a broad range research process: of databases alongside relevant research and policy analysis conducted by humanitarian and civil society organisations. Vivvet and Herman Cramer; Constantia and Gale Hodge; and Milagros Negrón. Alzheimer’s Disease International – This research does not attempt to be a comprehensive overview Paola Barbarino, Annie Bliss and Chris Lynch; Alzheimer’s of peoples’ experiences of living with dementia or wider Pakistan – Dr Hussain Jafri and Dr Yasmin Rashid; Age cognitive or psychosocial disabilities during a humanitarian International – Chris Roles and Poppy Walton; Asociación response. We are limited by a lack of comprehensive data Alzheimer Y Desórdenes Relacionados de Puerto Rico – collection and by poor awareness and capacity within the Ana L Gratacos; Alzheimer’s Society – Clara Fiti and Tatjana humanitarian sector to identify a broad range of first-hand Trposka; CBM – Julian Eaton; Chatham House – Rachel testimony. These factors in themselves demonstrate the Thompson; Dementia Alliance International – Kate Swaffer; need for greater awareness and action on the issue. Cromance Foto – Isaak González; HelpAge International – Patricia Conboy, Dr Juma Khudonazarov, Verity McGivern and Ben Small; Hong Kong Red Cross – Eliza Yee Lai Cheung; Humanity & Inclusion – Jazz Shaban; Human Rights Watch – Bethany Brown; Global Brain Health Institute – Victor Valcour; Iran Alzheimer Association – Faraneh Farin; Llanos Tunas Community Association in Puerto Rico – Mayris Noemi Ruiz Olmos; International Federation of Red Cross Red Crescent Societies – Sarah Harrison; I Forgotten in a Crisis Addressing Dementia in Humanitarian Response Foreword Foreword Worldwide, around 50 million people live with dementia. Of When UNHCR piloted the Washington Group Questions these 60 per cent live in low- in 98 registration interviews for new entry of Syrian and middle-income countries, refugees in Jordan, the percentage of people identified where barriers such as stigma as having disabilities increased 25% from 2.36% to more and poor access to social and than 27.55%.1 UNHCR registration staff reported that the health care systems present Washington Group Questions were useful in identifying issues even at times of peace. ‘hidden’ disabilities – those that are not visible to the Indeed, this very stigma leads eye or self-reported by the interviewee. Moreover, the to people with dementia often neutrality of the questions, and in particular avoidance living hidden from society and of negatively-loaded terms, was also said to be useful to at times of natural disasters, this can lead to neglect, lack of encourage disclosure of disabilities. awareness of their special needs for support and ultimately putting their lives at risk. Also, the report points out that, people living with dementia and A great proportion of humanitarian emergencies happen in their families are not being involved in the process of planning countries which are already ill-prepared to support people for policies to respond to crises. This is a mistake; we need to living with dementia. Too often these countries already fail to build dementia awareness into planning and implementation provide the diagnosis, care and support needed. of humanitarian response. The World Health Organization (WHO)’s Global action plan This report comes at a time of growing recognition of the need on the Public Health Response to Dementia 2017–2025 was for inclusive humanitarian action. The current lack of inclusion unanimously adopted by WHO Member States two years for people living with disability (including those with cognitive ago. Contained in the Plan was a commitment to planning for and psychosocial disabilities) in humanitarian response is humanitarian emergencies which considered individual support beginning to be acknowledged. Similarly, the specific needs of for people with dementia and community psychosocial support. older persons, the population group most likely to experience The 194 countries signed up to the Global plan must work with dementia, are being noted. the humanitarian system to ensure they fulfil their promises, People living with dementia are undoubtedly an at-risk population but alas! There is little sign that this is occurring on the so the duty of care on humanitarian actors to support their needs ground and this is why this report is so timely. is higher – as it is with pregnant women and children under five. It has been heart-breaking to learn of the experiences of Possibly what is not yet fully acknowledged is the scale of the issue. people living with dementia in times of humanitarian crisis To those that may require more evidence of the emergency from national Alzheimer associations worldwide and through that is dementia nowadays, I would like to remind them of the the production of this report. It has also been eye-opening 52 million people that are estimated to live with dementia right to understand the current deficit in response. now. As the report states so eloquently, in any given emergency, What this report has shown is that there are tools out there, the burden of proof should not be about identifying cases of such as the WHO’s mhGAP Intervention Guide and Training dementia to demonstrate a need for action, but to assume that Manual and the Washington Group Extended Set of Questions, this population exists. but these are not being used enough – if at all. It has also Dementia is ignored at times of stability, so governments and highlighted the lack of standardisation and a unified approach humanitarian actors need to do more during crises to ensure to supporting people with dementia in crises. Humanitarian individuals’ specific needs are addressed. ADI members, such as actors are not deliberately overlooking the needs of people Pakistan (a co-author of this report), are keen and eager to get living with dementia, but they do need
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