On Saturday 5 December, patients from across the world will join together to celebrate Patient Solidarity Day and declare that healthcare is a human right.
Leading patients’ groups from six continents will host a range of events to raise awareness among the public and will urge decision-makers to respect, protect and fulfil patients’ rights at every level of care. Events will include marches, free health screenings and meetings with ministers to change perspectives around health and improve the lives of patients.
A call to action
The World Health Organization states that every person has ‘the right to the highest attainable standard of health’. This is not always put into practice. Many patients are unaware of their right to the healthcare they need, and many healthcare providers – from governments to frontline care – fail to fulfil their duty of providing adequate care.
It is time for patients and providers to recognise that healthcare is a human right. This right is protected by the International Human Rights Framework, a body of international law that outlines and upholds the basic rights of every person. This Patient Solidarity Day, patients will stand up for the healthcare they require and remind healthcare providers of their responsibilities at every level.
Kawaldip Sehmi, CEO of IAPO, said:
‘All of us should have access to the healthcare we need: good quality, affordable care without fear of discrimination. Healthcare is a human right for all. We call on individuals, organizations and institutions to ensure that health systems are designed and services delivered to meet the needs of patients.’
Patient Solidarity Day was created by the Morris Moses Foundation in 2011 and has steadily grown since. Last year’s event, coordinated by IAPO, marked the first year as a global campaign and saw 80 organizations from 32 countries take part. This year’s theme continues the legacy of previous years by raising awareness around the rights of patients and placing them at the centre of healthcare.
In spite of the complexity of transportation and numerous flight changes, most of us managed to make our way to the regional meeting and much was achieved, including the amendment of the Regional Meeting Guidelines which will now be put to the ADI Board for approval. Member associations also renewed their commitment to use the ‘Strong Association Framework’ and volunteered to conduct a self-assessment and report of this at the 19th ADI Regional Conference in New Zealand next year. There was also continued support for approaching the Asia Pacific region in sub-regions (South Asia, East Asia, Southeast Asia and Oceania).
Once the conference began on the 19th November, the days were filled with eloquent speakers, abundant food and high quality entertainment in the evenings.
Kate Swaffer, Co-chair of Dementia Alliance International enlightened the audience on what dementia-friendly means to a person living with dementia. Kate was joined by Noriyo Washizu from Japan who told us about Uji, a dementia-friendly city, and Liyu Tang who talked about dementia-friendly stores and churches in Taiwan, where special prayers are offered to people affected by dementia on World Alzheimer’s Day. Meera Pattabiraman from India shared the news about the success of Dementia Guides in Cochin and the new Dementia Friends initiative across India. Jason Foo told the audience about the bottom up approach towards defining a dementia-friendly Singapore with various stakeholder groups, while DY Suharya shared the news that the Indonesian government has announced its support of making Jakarta an Elderly and Dementia friendly city. This passionate group was moderated by ADI Chair Glenn Rees who kicked off the session by explaining that dementia friendly communities have two different but complementary objectives:
To reduce stigma and raise awareness: the lived model
To empower people living with dementia: the right to respect and make decisions
We learnt a lot about the progress of the various countries in building dementia friendly communities, their cultural differences and how they are using innovative approaches. Looking around the room, I knew that I was already surrounded by an inspired audience.
Francis Wong, Regional Director, Asia Pacific Regional Office of ADI
The 18th Asia Pacific Regional Conference of Alzheimer’s Disease International and 37th Annual Convention of the Philippine Neurological Association was jointly held with the theme ‘From Lab to Home: Alzheimer’s Disease in the 21st Century’. Delegates from across the region met in Manila, which produced a unique consolidation of ideas with one common thread, the desire to move forward.
My personal experience of the conference was exhilarating and interesting. I could identify with some situations in other Asian countries, particularly challenges relating to cultural differences and social stigma, which remains a big problem. On a more positive note, I was pleased to meet members of the ADI family, and catch up with some who I had already met at other conferences. These events are vital to exchange ideas, plan for the future and they provide crucial opportunities to share best practice and learn from one another. I have lots of ideas to take back to Mumbai.
I was delighted when one of the plenary speakers mentioned my poster, ‘Alternative Therapies with Special Emphasis on Yoga’ and I was also pleased to do a presentation on the Dementia India Report (2010). We have a vision of making India dementia friendly, and although we are still a long way off, I pray that in time we can make this dream a reality.
The conference programme featured a range of topics, balancing medical and research based discussions with sessions on holistic and alternative therapies. I learnt a lot in these workshops, as I’m sure did many of my colleagues. Through a no holds barred approach, many of the sessions saw speakers express their personal experiences of dementia unconditionally and lovingly. After all, what does ‘dementia-friendly’ actually mean? Is it not love, compassion and empathy? I think Florence Nightingale would be truly happy to know so many people had come together at this conference. How sweet this music sounds.
I’d like to thank Corrie Martinez from the Alzheimer’s Disease Association of the Philippines and Francis Wong, Regional Director for ADI, who did a great job looking after everyone. And I cannot sign off with a special mention of the Fellowship Dinner, with its colourful ambience and bamboo dancing!
All good things must come to an end. With a great balance for both body and mind (my weakness for yoga!) and having absorbed lots of new information and ideas, I returned home with great experiences and fond memories. I can’t wait for the next conference in Budapest.
We’ve so far conducted five workshops across India, in Trivandrum, Chennai, Bengaluru, New Delhi and Cochin, and were pleased to welcome 200 participants from all walks of life, including family carers, health and social care professionals and the general public. The workshops encouraged participants to identify the challenges associated with setting up DFCs, and ways we can overcome the barriers. Lots of topics were discussed, but there were some key points which emerged from the session.
Working with the government and other partners
Everyone was very enthusiastic about working with the government and other partners, but there was a concern about how to go about it, given that dementia is unfortunately still a low priority for the government. India does not yet have a national dementia plan, despite the strong, evidence-based recommendations of ARDSI’s Dementia India Report (2010). We believe partnership is a strong cornerstone for success, so we discussed how local collaborations would be equally important among both governmental and non-governmental agencies to help maximise the impact of DFCs.
Using DFCs to raise awareness of dementia
Our estimates show that more than 60% of people living with dementia in India have never been diagnosed. Without a formal diagnosis, it is very difficult to educate and provide information to families to help support the person living with dementia, especially with regard to care skills. First and foremost, it is vital that we spread the message that dementia is not a normal part of ageing, and that more needs to be done to support people living with the disease. Creating awareness among a range of sections of society was identified as one of the most important factors in creating DFCs, especially amongst community level workers, social care and health professionals, to strengthen the current health system in India. A multidisciplinary approach is needed, offering robust care plans. It is our hope that by creating a ‘Dementia Friends’ style programme, we will educate the public on how best to support people living with dementia.
The banyan tree
Having an easily recognizable symbol for dementia friendliness is really important, so during the workshop it was suggested that we should adopt the banyan tree as the symbol for India. It is the national tree of India, and is associated in Indian culture with wisdom and ageing due to its longevity.
In a country like India, we felt it was important that a DFC scheme should include service development as an essential component. Supporting people living with dementia and their families throughout the dementia journey is really important, and there is much we need to improve. Over the past few decades, there have been big changes in the traditional family structures, more women now going out to work means there is an increased demand for external support services. Community level solutions which help respond to this issue and support families are also needed.
So what might a more dementia friendly India look like? Our aim is to develop communities that recognise dementia as medical condition and to be able to support people living with dementia and families, working within networks and partnerships to achieve these goals.
We would like to thank ARDSI Chennai Chapter, Nightingales Medical Trust, Bangalore, organizers of 5th International Conference on elder dignity and abuse, Centre for Gerontological Studies Thiruvananthapuram, India; 17th Asia Pacific Regional Conference of ADI, New Delhi and World Psychiatric Association Regional Congress, Cochin 2015 for facilitating these workshops.
We’re pleased to launch our brand new blog, a space for news, features, interviews and lots more. We’ll be featuring guest posts from people affected by dementia all over the world and from our network of Alzheimer associations – from Argentina to Zimbabwe.
Across the world, there is a growing awareness about dementia, but stigma and misinformation remain significant barriers to making the world a better place for people living with the disease.
2 out of 3 people globally believe there is little or no understanding of dementia in their countries, so it’s essential we work together to educate ourselves and our communities to dispel lingering myths about dementia. We hope that the posts featured on this blog can go some way to helping challenge this stigma and get people talking about dementia.
Our first post will be coming up very shortly, but in the meantime, check out this video which explores the global impact of dementia.