9 May 2019
People with dementia are being ignored in times of humanitarian crisis, according to a pioneering new report by global dementia organisations.
In some of the worst cases, lack of rescue efforts, health services and basic necessities have resulted in death as people with dementia are unwittingly overlooked by aid agencies, and governments fail to plan for some of society’s most at-risk citizens.
Mrs Milagros Negrón lost her husband Othni Rodríguez, who was living with dementia, during Hurricane Maria in Puerto Rico. Despite 22 separate calls to emergency services, Mr Rodríguez received no help.
Already bedridden as a result of his condition, Mr Rodríguez developed an infection and ultimately died from sepsis, having had no access to electricity, water or medication since the hurricane.
“The amount of assistance and care needed throughout the emergency to aid patients with dementia was severe. The government was not providing aid, so the carers would go out to the streets looking for help,” said Milagros.
Mrs Negrón’s story appears in Forgotten in a crisis: Addressing dementia in humanitarian response, co-produced by the Global Alzheimer’s & Dementia Action Alliance (GADAA), Alzheimer’s Disease International (ADI) and Alzheimer’s Pakistan.
The authors hope it will pave the way for humanitarian agencies and government bodies to recognise the unique needs of people with dementia, before, during and after emergencies – something that has so far not been addressed. The report contributes to a growing awareness of the need to address disability in humanitarian settings and is the first report to specifically highlight dementia.
While there are guidelines in place to mandate inclusive support for people at-risk, they are rarely being implemented for people with dementia and do not currently go far enough to meet their needs, according to the report.
Paola Barbarino, CEO of Alzheimer’s Disease International, added: “There are 50 million people living with dementia globally, 60 per cent in low and middle income countries where diagnosis is low and humanitarian emergencies are widespread. These people are currently ignored in emergency response planning. We are calling on all agencies to increase awareness and to adapt strategies, to better recognise the needs of this often hidden group.”
Amy Little, co-author and Executive Lead of GADAA who also leads Alzheimer’s Society’s international work, said: “Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, we have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma. Our findings reflect a wider issue of a lack of support for older people with disabilities in humanitarian response.”
There are numerous reasons why people with dementia are neglected, according to the report; starting with a general lack of understanding that dementia is a medical condition, and the stigma associated with it.
People with the condition are also more likely to become confused and disengaged as a consequence of the emergency and are less likely to make themselves known to humanitarian workers because of the communication challenges the condition can present.
Cognitive and physical disabilities can prevent people with dementia from carrying out everyday tasks like eating, drinking, washing and dressing, and the situation is made more challenging during a crisis.
Dr Hussain Jafri, CEO of Alzheimer’s Pakistan, said “During the 2005 earthquake and 2010 floods in Pakistan, as a voluntary association for people with dementia, we had to take matters into our own hands in rescue efforts. We want to see humanitarian agencies working alongside dementia specialists in the planning and handling of emergencies. Preparedness and planning must take this population into account – dementia awareness training, starting with basics like spotting the symptoms of the often ‘invisible’ condition, can save lives.”
Dementia can devastate lives. It’s the seventh leading cause of death worldwide and a major cause of disability and dependence among older adults. The global population of people over 60 is rising, over 1 billion in 2018, especially in regions with the greatest risk of natural disasters or conflict. Between 7.8 and 13.7 million older people with disabilities are currently affected by humanitarian crises.
“During humanitarian emergencies, agencies need to work quickly to identify people living with dementia and then to address their support needs. Ahead of a crisis, governments, agencies and civil society need to work together to plan for people living with dementia. The burden of proof should not be about identifying cases of dementia to demonstrate a need for action, but to assume that this population exists – which it does, in millions,” added Amy Little.