On 12 November 2018, ADI facilitated a seminar on Islamic values in dementia care at the World Innovation Summit for Health (WISH) 2018 in Doha, Qatar. ADI’s Asia Pacific Regional Director DY Suharya invited geriatrician Dr Heriawan and Amalia Fonk-Utomo, Chairperson for Stichting Alzheimer Indonesia Nederland, to present. It was a wonderful opportunity for us to spread global best practice in dementia care with a local relevance. In this blog, Dr Heriawan and Amalia share their thoughts on hosting this insightful seminar.Continue reading “Islamic values in dementia care with Dr Heriawan and Amalia Fonk-Utomo”
As Glaswegian James McKillop strode towards Arrivals in Tokyo airport last November, he read the customs sign. Had he anything to declare? Yes – he had a positive message of hope and the strong belief in the right to live well for almost 5 million people with dementia in Japan.
James – his journey
Now 75, James was diagnosed with dementia at 59. After recovering from the shock and encouraged by staff from Alzheimer Scotland, he realised that he could still lead a fulfilling life. The challenge facing him was to find his voice to express his determination to do so.
Soon, James was talking about his experiences candidly in venues ranging from care homes to conferences. He became a key founder member of the groundbreaking Scottish Dementia Working Group in 2002. The Group, led by people with dementia, works towards making life better for people living with dementia.
James’ journey to Japan started when he met the NHK TV Director Yuji Kawamura in Glasgow. Yuji’s follow-up programme ‘Nothing About Us, Without Us!’ on the Scottish Dementia Working Group had a big impact, as the first Japan Dementia Working Group was formed the following month.
Now James, accompanied and supported by his loyal wife Maureen, was in Japan with his message of hope. He had been invited to appear at two ‘Heart Forums’ in Tokyo and Osaka. The theme on both occasions was ‘A new dawn – people living with dementia mapping out their destiny’. The message from James: to exchange learning and share lived experiences.
Two cultures, one experience
James was soon sharing his personal journey of 15 years living with dementia. Speaking directly, James admitted his initial shock on receiving the diagnosis and the dark days that followed and spoke about the possible roles and opportunities for people living with dementia within their community and in society at large. His audiences in Tokyo and Osaka were deeply moved.
Two founding members of the Japan Dementia Working Group also spoke. First, Tomofumi Tanno, a 41-year-old with a two year old diagnosis of Alzheimer’s disease, provided an almost mirror image of the experiences of James’ own journey. Next, Kazuko Fujita, 54, living with dementia for the past 8 years, said that her initial experiences had been similar. For James, Tomofumi and Kazuko, the months following a diagnosis of dementia were blank and bleak with no support. Such a diagnosis can have a huge impact on people with dementia and families, particularly when the community all around lacks awareness and understanding.
Breaking the silence
Someone in the audience asked, “How did you break through the period of despair and isolation?” Tomofumi said that meeting other people living with dementia gave him hope and purpose, and above all encouraging smiles.
Another person asked how to lead a fulfilling life with dementia. Tomofumi answered: “Once out of the blank period and hopeful of a fulfilling life, it is vital to speak up and speak out. As dementia is not a visible condition, those who live with it have to make their needs known.” James added that his “Helpcard” he carries has been very useful, which states that he is living with dementia and what his needs might be.
Tomofumi created the ‘Orange Door’ in his hometown of Sendai to provide a welcoming meeting place by and for those living with dementia, offering a listening ear, guidance and a sense of hope. Kazuko launched a local support group ‘Clover’ in her region Totorri, working for and with people with early-onset dementia. James co-founded the Scottish Dementia Working Group. Their actions remind us that people with dementia are agents for change and improvement. By cashing in on their lived experience, they are leading the way towards a better life for their peers and a more dementia friendly society by influencing policy.
Dementia – we are all in it together
Kumiko Nagata, a panelist, said that dementia is everybody’s business now. In Japan, 1 in 5 will have had direct experience of dementia by 2025. She emphasised the need for meeting people with dementia, if only to hear their voices and aspirations.
James asked his audiences:
- If your mother developed dementia, how would you like her to be treated by society?
- If you yourself develop dementia at some time in the future, how would you like to be treated by society?
Looking to the future
To James’ astonishment he found that his Japanese peers shared the same experiences, mirroring his frustrations, fears and hopes to create a dementia friendly world, a better life ahead for the current 46 million people living with dementia worldwide – and for the many millions to follow.
By Dr Mayumi Hayashi from King’s College London and James McKillop, who is living with dementia
Follow the Scottish Dementia Working Group on Twitter
Like the Japan Dementia Working Group on Facebook
On 18th November, delegates from 14 countries participated in the 18th ADI Asia Pacific Regional Conference which was hosted by the Alzheimer’s Disease Association (ADA) of the Philippines. Our arrival in Manila was made even more exciting as the Asia-Pacific Economic Cooperation (APEC) Summit was happening at the same time.
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.
Vidya Shenoy, Secretary General, Alzheimer’s & Related Disorders Society of India (ARDSI)
The 19th Asia Pacific Regional Conference of Alzheimer’s Disease International will be held in Wellington, New Zealand, 2-5 November 2016. Please contact Alzheimers New Zealand for more information.
Over 4 million people are living with dementia in India and this figure is expected to double every twenty years. Here at Alzheimer’s and Related Disorders Society of India (ARDSI), we’ve been attempting to define what a Dementia Friendly Community (DFC) might look like here, using workshops to get people talking about ways we can help implement these programmes.
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.
By Sudhir Kumar and Babu Varghese