Alzheimer’s Association of Israel, or EMDA, is a non-profit organization founded by family members of people living with dementia, which aims to support these families. One of the services offered are caregiver support groups. Through the groups, carers can access information on the disease and how to deal with the health and social care systems.
The group sessions also provide an opportunity for caregivers to share their innermost thoughts and emotions in a supporting and understanding setting, receiving encouragement and drawing strength from one another. EMDA currently operates around 50 support groups throughout Israel that meet once a month, led by social workers or trained volunteers.
I attend meetings in Petah-Tikva. My father was diagnosed with dementia around three years ago. When it started, before his medication was balanced, I felt lost. I was looking for answers – how do I cope with this? What should I say? How should I respond? How does this affect my personal and family life?
I was looking for answers online and that’s when I came across EMDA’s support groups, who invited me to a meeting. It felt like I got to the right place at the right time. I learned how to accept this situation, how to take in any moment I had with my father, even when some moments were very difficult. There were also times, unfortunately only a few, when I could say: that was fun. I cherish these moments.
My father passed away 5 months ago. Yesterday I attended another support group meeting. I came, for the second time since my father’s passing, in order to feel a sense of closure. The first time was right after he passed away and my mother and youngest son came with me. I wanted them to share their feelings and to meet the people who were there with me for almost three years.
I first felt closure when my mother, overwhelmed with emotions, shared her point of view as a spouse of someone with dementia. My son, 18 years-old, had a strong bond with his grandfather. Despite my father’s disease and the deterioration in his condition in the last years, their relationship hasn’t ceased.
Yesterday, I personally felt a sense of closure and thanked the leaders of the support group who were there for me during this difficult time of my life. I wish to thank the leaders of the support group of the group in Petah-Tikva, especially Ruthie and Ilana, who were always there for me.
I was about 14 when my dad was diagnosed with early onset Alzheimer’s disease. The doctors attributed it to the belated emergence of effects from an accident he had when he was younger. For the next 10 years, I lived everyday seeing my father fight the disease and the family’s struggle to redefine normalcy, until he passed away in 2014.
I have a lot of respect for my mum. Raising three kids, holding down a job and being a caregiver was hard work. The disease really affected the entire family and it can suck you dry mentally, physically, emotionally and financially.
The illness was new to all of us and even my mum had a hard time trying to understand it, so it was difficult for her to educate us on it. As kids, 10 years ago, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone that came knocking on our doors to educate us. From understanding the diagnosis to coming to terms with it, learning on a daily basis what the disease does and what it robs from a person, balancing the caregiving with the urgent needs of the family, and simply experiencing the heartache of missing a person when he is right in front of you – it’s a lot to handle.
As we journeyed through my father’s battle with the disease, I could tell that my dad was struggling with a lot of confusion in the initial stages. My father used to be the navigator and driver for the family but one day he was caught in the crossroads and didn’t know which road to take, although it was a familiar route. Seeing that confusion and anger within him pained me. That was when I realised that he couldn’t do the things he could before.
He was also always fleeting between two states of mind, one of confusion and the other of clarity. There were times when I could tell that he knew he was losing his memory but was not able to do anything about it. And then there were times that he forgot that he was losing his memory and was thrown into confusion, lost and angry.
Losing him has made me think about the millions of other people who are affected by Alzheimer’s, who may not know what to do with their family members who have it; or feel helpless and hopeless in the long months and years of caring for someone who is slowly slipping away.
I wanted to draw from my experience to do something for him to live on in his memory. My faint memories of him were from a younger age and I never really got the chance to know him better as a person and as a father, before we had to finally let him go. Project We Forgot is partially a tribute to my father.
It’s true that we can’t control this illness or fight against time, as much as we want to. But we don’t have to let it get the better of us. This is why I’ve been inspired to create this community to tackle the need for greater awareness and support – one that offers a younger and fresher take on the disease while focusing on the digital generation, to build a community of support and to let people know what Alzheimer’s truly is by humanising the disease.
As I build this, I often picture myself as a teen and imagine how much of a difference having such a community of support would have helped me and my siblings when we were going through my dad’s illness. I hope that this space will allow caregivers to find their place to identify and connect with other individuals who might understand what they are going through. And especially to the younger ones, for them to know that they are not alone, to know that it is ok to speak out about it, and to use their journey to inspire others.
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.