Member profile: Cuba

WAM 2013

By 2030 Cuba is predicted to have the highest proportion of older adults in any Latin American country. Today around 19% of the population is aged over 60, but in just 15 years’ time this will rise to 30%. Cuba is a middle income country, but has health indicators similar to those in high income countries, and a life expectancy at birth of 78 years.

As a result of the rapid aging of the Cuban population, it is estimated that the number of people living with dementia, currently standing at around 150,000, is expected to double by the year 2030. During the next 30 years, we expect there will be a tenfold increase in the demand for long-term care for people living with dementia.

The Cuban Section on Alzheimer’s Disease, in Spanish Seccion Cubana de Alzheimer (SCUAL), was founded in April 1996 and its main objectives have been to give information about dementia and educate family members and professionals, as well as to improve medical care for people living with dementia. In 2000, SCUAL became a member of ADI.

Over the past 8 years, SCUAL have participated in a national program to assist people who are living with a disability, and to promote early diagnosis of dementia and risk reduction programmes. To date, more than 40,000 people over the age of 65 have taken part. The programme also helps to support families and training for health professionals. SCUAL collaborated to develop an intervention program called ‘Helping carers to care’, which provides basic education about dementia and specific training on managing behaviours.

SCUAL also participates in the work of the 10/66 Dementia Research Project, a network of over 100 active researchers from more than 30 low and middle income countries who are studying the prevalence and impact of dementia. In Cuba, more than 3,000 participants have been interviewed so far. SCUAL is now supporting a new project by the 10/66 team, to help understand changes in prevalence and incidence over a 10 year timeframe. The project also focuses on the social impact of dementia and how best to identify underlying risk factors and implement care packages.

The Cuban’s National Dementia Strategy has been developed by SCUAL in partnership with the Ministry of Public Health, working together with researchers from several fields and with families and caregivers of people living with dementia. The plan has recommended that the strategy focus on increasing awareness, developing support services, promoting early diagnosis and risk reduction, quality assessment and implementing good clinical practice guidelines. It also asserts that there should be an increase in the availability of specialists in primary healthcare and in investment into dementia research.

SCUAL undertakes a wide variety of activities to help improve awareness about dementia in Cuba, including an annual conference and a campaign for World Alzheimer’s Month and the World Alzheimer Report, including an annual Memory Walk on September 21, World Alzheimer’s Day.

In 2011, Cuba was also the venue of the Iberoamerican Congress on Alzheimer’s Disease, one of ADI’s regional meetings, where 500 attendances from Latin America, Spain and other countries came together to discuss how to improve the lives of people with dementia in the region.


By Juan de Llibre Rodriguez, President of SCUAL

Scotsman’s message of hope to Japan

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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

Finding strength through support groups

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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.


By Anat Aviv

Like Alzheimer’s Association of Israel on Facebook

Contact your national Alzheimer association for details of support groups available in your area.

Melissa’s story

Melissa Chan

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.

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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.


By Melissa Chan, Founder of Project We Forgot

Connect with Project We Forgot on Facebook, Twitter and Instagram

Healthcare is a human right

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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

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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.


 

Guest post from the International Alliance of Patients’ Organizations (IAPO)

Find background information, photos, ideas for activities, free resources and much more about Patient Solidarity Day at www.patientsolidarityday.org.

Asia Pacific Regional Conference of ADI

AP ADI members
Delegates from ADI member associations and the ADI Board

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


 

Vidya

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.

Please treat this as a personal invite to the ARDSI’s National Conference 2015 to be held in Mumbai, 4-5 December 2015. If you would like to know more, please contact vishvidya9@gmail.com

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.