Dementia Awareness Week - I am still there

On Our Radar's hand-held device giving a voice to people with dementia

This week is Dementia Awareness Week (15/05/16-21/05/16) and many charities and organizations come together to raise awareness about the condition, tell persons touched by dementia that they don’t have to face it alone and encourage people to remember the person behind the dementia. 

The person is more than the dementia. “Even whilst the 'wall of dementia' is in front of them, they should be held in the same regard, and treated in the same manner as they were, before they had this condition," urges the Alzheimer’s Society. "Even at an advanced stage, people with dementia can sometimes indicate they are aware of those around them; they are still ‘there’. 

 Paul Hitchmough from Liverpool couldn’t agree more. “…Suddenly because you’re diagnosed with this thing called dementia, in some shape of form you become an alien,” he said recounting how an old work colleague recently avoided him at the supermarket. “I really do think it needs to be opened up, this thing.…Just to let people know that you are still the same...” 

Paul’s words are part of the Dementia Diaries, a national project funded by Comic Relief, which brings together people’s diverse experiences of living with dementia as a series of audio diaries. I love this project because it gives a voice directly to people living with dementia.

The Dementia Diaries were launched in January 2015 by On Our Radar, a social enterprise which uses technology to give a voice to marginalized communities. So far, the On Our Radar team has trained 31 people living with dementia across the country to use simple 3D printed mobile phone handsets to record their thoughts and experiences as they occur.  The team then edits and transcribes the diary entries and uploads them onto the Dementia Diaries website, where they can be listened to and shared. 

In their entries, the diarists, who are all part of the Dementia Engagement and Empowerment Project (DEEP), document their daily experiences of living with different forms of dementia.  They talk about their frustrations and joys, what they have lost, what they can still do and what they want people to know.

You can read an entry’s transcript, look at the photo of the diarist and listen to the audio. It is a moving and very powerful.

You can read a story I’ve written about the Dementia Diaries for Positive News here.

And here is short extract from a diary entry by Anne McDonald from Glasgow:

“Why do you call me victim? No one attacked me. Many people live with this condition. We’d rather not have it, but we just get on with it. Language is not difficult…But please remember, this is real life for us. None of you know the shifting sands we walk on daily. None of us know what is ahead. Seize the day and be kind to each other. Thank you.”

If you're worried that you, or someone close to you, might have dementia, call the Alzheimer's Society's National Dementia Helpline on 0300 222 1122 or email helpline@alzheimers.org.uk for advice and support.

 

2016 World Press Freedom Index: Deep Decline in Media Freedom

This is great for censorship. Putin, Erdogan and other authoritarian leaders are celebrating.  We need to fight back the “deep and disturbing” decline in media freedom across every continent, at both the global and regional levels. 

The 2016 World Press Freedom Index, recently published by Reporters Without Borders (RSF), shows that every continent has seen its press freedom score decline. The Americas have plunged 20.5%, mostly as a result of the impact of physical attacks and murders targeting journalists in Mexico and Central America. Europe and the Balkans declined 6.5%, mostly because of the growing influence of extremist movements and ultraconservative governments.  The Central Asia/Eastern Europe region’s already bad score deteriorated by 5% as a result of the increasingly glacial environment for media freedom and free speech in countries with authoritarian regimes.

This matters enormously because if journalists are not free to report the facts, denounce abuses and alert the public, how would we resist the problem of children-soldiers, defend women’s rights, oppose injustice or preserve our environment? In some countries, torturers stop their atrocious deeds as soon as they are mentioned in the media. In others, corrupt politicians abandon their illegal habits when investigative journalists publish compromising details about their activities. Still elsewhere, massacres are prevented when the international media focuses its attention and cameras on events.

The reasons for the decline in freedom of information documented by RSF include the increasingly authoritarian tendencies of governments in countries such as Turkey and Egypt, tighter government control of state-owned media, even in some European countries such as Poland, and security situations that have become more and more fraught, in Libya and Burundi, for example, or that are completely disastrous, as in Yemen. 

The survival of independent news coverage is becoming increasingly precarious in both the state and privately-owned media because of the threat from ideologies, especially religious ideologies, that are hostile to media freedom, and from large-scale propaganda machines. Throughout the world, “oligarchs” are buying up media outlets and are exercising pressure that compounds the pressure already coming from governments. 

Published every year since 2002, the World Press Freedom Index ranks 180 countries according to the level of freedom available to journalists. It offers a snapshot of the media freedom situation based on an evaluation of pluralism, independence of the media, quality of legislative framework and safety of journalists in each country. It does not rank public policies even if governments obviously have a major impact on their country’s ranking. Nor is it an indicator of the quality of journalism in each country.

You can find more about the report here. 

What drives young Syrians into ISIS?

Young Syrian refugees in Lebanon/Russell Watkins DFID

More than ideologies, it is poverty, desperation and desire for revenge that drive young Syrians into extremist groups.

A new study by the peacebuilding NGO International Alert shows that the key factors that push young Syrians into joining extremist groups are the need to earn a basic living, regain a sense of purpose and dignity, and the belief in a moral duty to protect, avenge and defend their people.

The study, titled Why young Syrians choose to fight: Vulnerability to recruitment by violent extremist groups, draws on interviews with 311 young Syrians, their families and community members in Syria, Lebanon and Turkey, to understand what drives both vulnerability and resilience to recruitment by the groups ISIS and Jabhat al-Nusra (Al Qaeda’s affiliate in Syria).

Adolescent boys and young men between the ages of 12 and 24 were found to be most at risk, along with children and young adults not in education, internally displaced persons (IDPs) and refugees without supportive family structures and networks.

The findings suggest that radicalisation is not an explanation for joining a violent extremist group per se. For many young Syrians, belief in extreme ideologies appears to be, at most, a secondary factor in the initial decision to join an extremist group. 

Instead, vulnerability is driven by a combination of extreme trauma, loss and displacement, lack of alternative ways to make a decent living, the collapse of social structures and institutions including education, and the desire to get revenge against the regime of President Bashar Al-Assad. According to respondents, armed groups also provide a strong sense of purpose, honour and self-worth.

As one young Syrian man in Lebanon said: “People can find a new meaning to their life in extremism. Extremism opens a door to a new life where they are wanted.”

In Syria more than 6,000 schools are out of use, having been attacked, occupied by the military or turned into an emergency shelter. The collapse of the education system, with some two million children out of school, has also greatly contributed to young people’s vulnerability to joining violent extremist groups, who are filling this gap by providing their own forms of education, the report says. These ‘schools’ are highly segregated, exploit sectarian divisions and support divisive narratives.

UNICEF, which today unveiled details of a major new fund (Education Cannot Wait) to help get children back in class during emergencies, also stresses the crucial role of education in countries affected by wars and disasters.  

"Education changes lives in emergencies," said Josephine Bourne, UNICEF's education chief, in a statement. "Going to school keeps children safe from abuses like trafficking and recruitment into armed groups."

Yet, only 2 percent of global humanitarian appeals are on average dedicated to education.  "It is time education is prioritised by the international community as an essential part of basic humanitarian response, alongside water, food and shelter," Bourne added.

Offering comprehensive, inclusive and quality education, which also incorporates trauma healing and psychosocial support, was one of the four key factors identified by the report that can prevent recruitment.  The others were: providing alternative sources of livelihood, better access to positive social groups and institutions, and avenues for exercising non-violent activism.

The report stresses the need to integrate these social cohesion efforts into humanitarian aid projects, regional policy objectives and diplomacy aiming to reduce discrimination against refugees, which can also drive recruitment.

Note: The study was conducted five years into the conflict in Syria, which has claimed an estimated 300,000 lives, displaced 6.5 million people internally and prompted 4.8 million people to flee to neighbouring countries. 

You can find out more about International Alert's work in Syria here.