25 years of ADI - Interviews

Daisy Acosta, Chairman

I have been involved with ADI since 1994 when we founded Asociacion Dominicana de Alzheimer in the Dominican Republic. In 1998, I went to London for the first Alzheimer University where I got to know ADI better. I remember Elizabeth Rimmer, with all her characteristic enthusiasm, giving us a “tour” of the aims, mission and vision of ADI; showing us the written materials that it had for members and I was captivated by the work ADI was doing for its member countries. I could immediately see ADI's huge potential to improve the life of people with dementia and their families and make a real difference on a worldwide scale. The passion Dr Nori Graham, the Chairman at that time, had for ADI was contagious.

Since then I have been helping ADI in any way I can: translating materials, giving my thoughts on different issues, and working to make the Latin American region understand the importance and benefit of being an ADI member. When the 10/66 Dementia Research Group was established, I recognised it as an important tool for the growth of the dementia movement. I have been involved with 10/66 right from the beginning and up to the present time. I have come to know most of the people within ADI, the work of its member associations, and have attended all its conferences.

I was part of the Nominations Committee for several years before gaining a position on the Elected Board. I was eventually voted Vice Chairman and have since become ADI's Chairman. I never thought I could undertake such a position - coming from such a small, under-developed country and with English not being my mother tongue. However, with the support of my association in the Dominican Republic and the confidence and support of Orien Reid, my good teacher, here I am today, the Chairman of ADI, a position I never dreamed of holding and for which I am extremely honoured. I remember receiving the call from the Executive Director to let me know about my being voted in as Chairman. At the time, my house was flooded after being hit by hurricane George. My kids took a picture of me whilst I was taking the call, making the joke that this is what you get for electing a Chairman from the developing world!

ADI was a smaller organisation when I first became involved but with the same intrinsic qualities that it has today. It shared an office with the Alzheimer's Society and had a great staff dedicated to the cause. We have been very lucky with this! When I first became involved, Nori was Chairman and Elizabeth was Executive Director. The cohesion between them and their great leadership was the key that led ADI to where it stands today.

ADI is unique in many aspects. The threat of dementia has huge implications for humanity and we are an institution that can make a difference for the millions of affected people and families worldwide. ADI is also unique in its number of members. This number gives us tremendous power to fight for the people we stand for. It is special in that all of us work without waiting for a salary; all we want is to make life better for people with dementia and their families. We make an effort to understand the life circumstances of people with dementia in different cultures and socioeconomic backgrounds and adapt our recommendations based on the knowledge we have. We have put the developing world on the dementia research map, through our 10/66 Dementia Research Group. ADI serves the world through a very small office with a staff of only four people. That is truly amazing! ADI is special in many ways, but most importantly in the love that it shows and delivers through its work.

My favourite conference has to be, of course, the 2003 ADI conference in the Dominican Republic! It was such a huge challenge that I never thought would be possible. However, looking back at the time, I have nothing but the warm feeling of a job well done!

This may sound crazy, but my real hope is that in 25 years from now, ADI is nothing but history. History of a worldwide movement that accomplished what it worked for and is history because dementia is also history.

Princess Yasmin Aga Khan, President

Interviewed by Shivani Nandi
 
Princess Yasmin Aga Khan's involvement with the Alzheimer's Association in the USA started at a very young age, when her famous mother, actress Rita Hayworth, was diagnosed with Alzheimer's disease in her 50s. Princess Yasmin was her mother's primary caregiver for eight years.
 
Even though the disease had first been described by Alois Alzheimer in 1906, there would be absolutely no help for carers and people with dementia for decades to come. In former times - and even so now in countries with lesser awareness - people with dementia were usually shut away in mental institutions. At the time that her mother was diagnosed in the early 1980s, antipsychotic drugs were prescribed for the behavioural changes. In her mother's case, doctors prescribed a powerful drug, Haldol, but without clear instructions about dosage. Ultimately it was a process of trial and error for the young daughter and the nurse's aide to work out which dose would be safe and effective for her. The actual diagnosis took place in 1981 through CT scan and memory testing and the physicians did use the term Alzheimer's disease – which itself was quite amazing for that time. Once the news was made public via the press, Jerome Stone approached Princess Yasmin and thus began her dedicated involvement in the cause of Alzheimer's disease and related disorders: “It's a lifelong journey for me,” she shares.
 
Princess Yasmin noted the astounding growth from a nucleus of carers in 1984, increasing into an incredible organisation. ADI has reached out across the world with its dedicated and passionate efforts in increasing public awareness. ADI is dedicated to guiding and helping carers. To her “it's a dream come true.”
 
Before the formation of ADI, there were carers across the globe who had no help or support, and nobody to advocate on their behalf. Princess Yasmin believes ADI is special and unique in embracing not only carers and people with dementia, but also medical professionals, researchers and social workers, bringing them together for a common dialogue – to improve the quality of life of carers and people with dementia.
 
She hopes that, over the next 25 years, there will be a greater global awareness of ADI with the organisation being able to assist all countries in need. The fact that dementia was discussed recently at the World Economic Forum in Davos, Switzerland, is another step towards that global awareness. There are, of course, many challenges facing ADI, of which to reach out to the governments of various nations and seek interventions in providing affordable and quality care and services is the most important. Central to this is education about diagnosis as well as post-diagnosis. Health care across countries is disparate, so ADI tries to reach out to those countries that don't have that ability. There is so much that needs to be done in providing continuing care: “We have really only just started, even though we are in our twenty-fifth year,” she added.

An incredible quality of ADI's is that, increasingly, people with dementia have come forward to deliver keynote speeches and share their experience at the annual international conferences. Princess Yasmin has attended numerous ADI conferences through the years but declined to choose a favourite: “Every conference is special in its own way. For me it's a wonderful feeling of excitement to meet with other carers and share their story.” Her hope is that, in her lifetime, there will be a cure and the end of dementia. With new research showing that diabetes, hypertension and heart disease are risk factors for Alzheimer's Disease, the next best thing to do is to take care of one's mental and physical health through lifestyle changes such as diet and exercise. Thus prevention should be on the agenda as well.

Henry Brodaty, Honorary Vice President

At the inaugural meeting in 1984, initiated by Jerome Stone in Washington, D.C., there was representation from the USA, Canada, UK and Australia and an observer from Belgium. It was there that we decided to form ADI.

I am privileged to have been a member of the ADI executive in various capacities since the beginning. When we had regional representation, I was vice-president for Oceania. I served as Chairman of the Medical and Scientific Advisory Committee (later Panel) from 1993 to 2001, and Vice Chairman of ADI, and then from 2002 to 2005, Chairman of ADI. In 2006 I joined former chairmen, Brian Moss and Nori Graham, as an Honorary Vice President, which is a life position.

ADI was small and informal when I first became involved. Jerry, who was the dominant force, created us and kept us on track. He invited Princess Yasmin Aga Khan to be our president, attended every meeting and was particularly concerned with finances. Brian Moss became our first Chairman in 1990 and was succeeded by Nori Graham, me, Orien Reid and Daisy Acosta. We had a part-time administrative officer, Rachel Billington, who was based at the Alzheimer's Association office in the USA. This helped develop ADI and reach out to other non-Anglo countries. ADI really launched on to the world stage and became more professional once Nori became Chairman and we appointed a full-time CEO and moved the office to London.

The charity has become more competitive and more business-like; less like a family cottage industry. However, we still need to spend more time and money on marketing and developing a funding base.

ADI is the only worldwide organisation devoted to improving the quality of life of people with dementia and their families. It is not driven by scientific glory or personal aggrandisement. I believe that ADI is truly democratic. It embraces all people irrespective of nationality, religion or affluence and maintains its ethical values. I regard ADI as family and that is what makes it special for me. We support others and our members support ADI.

One of ADI's challenges is how to penetrate and reach countries where there is little awareness of dementia and no Alzheimer association. ADI also needs to reach people in those countries with associations but where membership equates to a small percentage (usually less than 5% of the total number of people with dementia and their families). Over the next few years we need to secure funding for ADI, work to make dementia a global health priority with the World Health Organization, and look to the sustainability of our member organisations. Volunteer organisations go through cycles and we need to encourage our members to allow new faces and ideas in. This is essential for an organisation's regeneration; it should be built into constitutions.

I remember being star struck in Helsinki and totally impressed in Stockholm by the Queen of Sweden. It is really encouraging when royalty or presidents really understand the issues and give their support to our cause. In 2003, Christine Bryden became the first person with dementia to join the ADI Board. This set an important example for national associations.

I have really enjoyed all of ADI's conferences: join ADI and see the world! The best moments for me at all conferences are the Council meetings when each country introduces itself. I feel as if we are one and so proud of what everyone is doing. The events outside the formal conference are most memorable: renewing friendships each year; catching up; site visits; the dinners and dancing; the wonderful hospitality.

More specifically though, I remember the 1988 Brisbane conference. It was the first Alzheimer's conference in Australia and, at that time, the biggest that ADI had held. It coincided with the World Expo in Brisbane. I also remember the 1998 Cochin conference very fondly as this was the birth of the 10/66 Dementia Research Group.

I foresee a hundred and twenty member countries with flourishing organisations OR (very unlikely) the demise of all Alzheimer associations and ADI after the cure for Alzheimer's disease and all dementias is found!

Nori Graham, Honorary Vice President

In 1987, I was Chairman of the Alzheimer's Society (UK). Brian Moss, then the Chairman of ADI, approached me and asked if I would be interested in joining the Board. I have always been interested in international activity and was delighted to accept. Subsequently, in 1996, I was elected Chairman of ADI and went on to serve two terms in the Chair until 2002 when I was made an Honorary Vice President. I remain involved with the work of the organisation and attend all the international conferences. I am often invited to attend the committee meetings. I continue to participate actively at the conferences, especially in Quality of Life workshops that I run jointly with Barry Gurland and Sube Banerjee.

In 1987, ADI was a much smaller organisation with 11 countries in membership. ADI was then based in the office of the USA's Alzheimer's Association and was run by one part time staff member. Its aims at that time were to increase the world vision of dementia, to bring together national associations, who were mainly in the developed world, and to hold an annual conference.

Since I became Chairman in 1996 there have been several significant changes. ADI now focuses on helping countries to form national associations and to provide subsequent support for them. Its influence has been greatly extended to cover many less developed countries; most new members are from the developing world.

The involvement of people with dementia in ADI's work is another significant change. ADI currently has a person with dementia on its Board and people with dementia are encouraged to attend the annual conferences and to contribute. ADI also encourages its national members to involve people with dementia in their work.

The 10/66 Dementia Research Group, started in 1998 by Prof Martin Prince and his team, has been ADI's special area of research and the one to which it has given some financial assistance. It covers 20 countries, all in the developing world, and in each of which there are active collaborators. This research has focussed both on the prevalence of dementia and on the different caring arrangements in the countries involved. The results of this research have armed national associations with the facts and figures they need to influence public policy.

ADI is special for a number of reasons. It runs a unique series of Alzheimer University courses, training individuals engaged with dementia in a country how to set up and run an Association. ADI is unique in its increasing emphasis on the developing world. It has a Board with wide geographical representation that includes people with dementia: something that would have been unthinkable twenty years ago. The ADI annual International Conference is also special in the way it attracts participants from all relevant disciplines. Carers are always well represented, as are people with dementia, policy makers and researchers. ADI has a small highly focused office staff, well-defined aims and the exercise of tight financial controls.

The first time I spoke at an ADI event was a plenary session at the opening of the conference in Ireland in 1989. I was speaking as Chairman of the Alzheimer's Society (UK) but was a generally unknown face in ADI circles at the time. I had prepared my talk on catalogue cards; there was no PowerPoint in those days. To my horror, I realised as I got to the airport that I had left the cards in my bedroom where I had been practising the night before. I wasn't sufficiently well practiced to do without them so, in a panic, I called my son who at the time happened to be doing a temporary job in an office. Thankfully, he was able to send through my talk to Ireland in one long scroll of faxed paper. As I arrived at the conference venue I was greeted by the then Chairman of the Ireland association, Michael Coote, with the news that a 'special message' had arrived for me by fax that morning. Needless to say, I did the talk, and the incident gave me an amusing anecdote with which to begin!

I also have very fond memories of the Indian conference: the colour, the smells, the food, dancing, the elephants and the clothes. It was wonderful and the enthusiasm was almost tangible.

I hope, in the future, that governments throughout the world will recognise dementia and provide appropriate culture-sensitive services with easy access to simple information on dementia and its management. Education and training is a key requirement. Similarly, I hope that the WHO will recognise that the situation of older people is critical to the health of the whole population and address the dementia issue more directly than is currently the case. I hope that, in time, we will have a world where we know a lot more about how to prevent dementia. We also need to have more knowledge about the way care arrangements affect the quality of life of both carers and people with dementia.

Zaven Khachaturian, Former MSAP Chairman

Interviewed by Shivani Nandi

When the first meeting was held in Washington, D.C. to explore the idea of creating ADI, Zaven Khachaturian was a part of the planning group. Responsible for both ADI and the USA's Alzheimer's Association scientific programmes, he had put together the first scientific advisory board and helped to organise the ADI meeting in Brussels, Belgium. As a young adult, while still at college in the late 1950s, he developed an interest in brain mechanisms of learning and memory and this interest continued throughout his academic career.

His original interest in being involved in ADI was to have an international component to the programme that was in the development stage at the National Institutes for Health in the USA. He felt that an international collaborative network was required to develop epidemiological studies, identify risk factors and develop standard diagnostic instruments so there would be a more global uniformity.

Zaven believes the most important changes in ADI took place in the 1990s when more countries got involved and the relationship between the Alzheimer's Association and ADI was severed. ADI then became an organisational entity of its own and the torch was passed from the USA to the UK. ADI meetings became more meaningful and the events more substantial where family members from different countries exchanged ideas. In the initial stages the attitude of many countries was that other public health issues such as nutrition, childhood mortality and infectious diseases were a health priority. That dementia is now a serious global problem is being gradually acknowledged.

Zaven acknowledges that ADI is the only organisation that brings countries from around the world together to share information and experiences. “There is no organisation that I know of in the world that brings people with common interests to the same table,” but continued to feel that the “scientific component is still very weak and hasn't evolved as it should have through the years.” ADI, he feels, should step up and take a leadership role.

He emphasises that the challenge facing ADI is to “have a single goal, a single mission, to speak with a single voice so as to accommodate the diversities and points of view to the world and to the public” and that “the amount of effort in finding solutions to address this public health problem is woefully inadequate in all countries, including the USA.” Thus the allocation of resources to dementia lags behind AIDS, cancer and heart disease.

Zaven hopes that ADI will play a more active role in harmonising global research into dementia. Without research he feels it is impossible to find solutions. He feels that ADI should play a more prominent role in strategic planning and directing global research. “There is a big vacuum which is currently not filled by anyone”.

Yoshio Miyake, Japan

Interviewed by Shivani Nandi

Japan had already started its fledgling Alzheimer association five years before the invitation to attend the initial meeting to set up ADI in 1984 arrived at their office. Initially called Association of Families Caring for Demented Elderly the name was later changed to Alzheimer Association Japan (AAJ).

Dr Miyake first participated in an ADI meeting in 1990 at the conference in Mexico, following which he attended these meetings every year. Though a geriatrician, his primary concern was to support family members. Serving various roles through the years, including Vice President of AAJ and committee member of ADI, he acknowledged that the biggest event ever for Japan was hosting the historic ADI conference in 2004.

Yoshio explained that ADI has been a tremendous benefit to AAJ. At his first ADI conference, he was surprised and impressed that researchers, physicians, nurses, and family members came together as a unified group to discuss various issues related to caring. Through presentations and information sharing, the delegates also spend an enjoyable time together in a rather familial atmosphere. He was surprised at the remarkable and unique feeling of camaraderie and fellow feeling of ADI conferences and strongly felt that the Japanese Alzheimer association would most certainly benefit from its participation. AAJ became a member of ADI in 1992 and hosted the ADI conference in 2004. Overcoming various difficulties and linguistic barriers, it was the first time that a Japanese person with dementia had shared the story of their life with the disease in public. It was a remarkable breakthrough as dementia had been looked upon as taboo in Japan.

Yoshio considers ADI meetings to have an impressive array of subjects related to dementia, such as human rights, spirituality, legal and economic issues as well as fundraising. Developed associations with more experience and a longer history of involvement with ADI share information and thus it was a wonderful learning experience for AAJ. The most memorable event, to Yoshio's mind, was at the 2001 ADI conference in New Zealand when Christine Bryden came forward as the first person with dementia to speak during a keynote session, giving a candid and inspiring account of living with dementia. Her passionate speech received a standing ovation from a packed audience.

Statistics indicate that dementia is going to become a major problem through the coming decades. Through its dynamic growth and indomitable efforts, ADI is uniquely positioned to be a leading organisation to support people with dementia and this carer-centred movement. “I would like ADI to preserve and continue these salient efforts,” Yoshio states.

He feels the main challenge facing ADI is the growth in sheer numbers of people with dementia in developing countries such as India and China. The difficulty in this is to find ways of supporting these countries, while trying to understand their cultural differences. And while there has also been a great deal of progress in clinical research toward better treatments, it is important that the results of such research should benefit the family caregivers. Yoshio hopes that ADI, in collaboration with the World Health Organization, can explore ways to advocate for lower costs of treatment and care.

Sadly, Yoshio's wife started showing symptoms of dementia about 2 years ago after succumbing to encephalitis, and now requires full time care. He shares that he is keenly conscious of the strain and difficulties of each day that he experiences as a primary carer: “On a personal level, I have benefited greatly from my association with AAJ and ADI. In my years of communicating with other carers in Japan I have learnt in countless ways from their experiences about innovative and ingenious ways of caring. AAJ has also continued to pursue the issue of social support toward family members caring for people with dementia, with a major outcome of the introduction of the Long Term Care Insurance in Japan. Thanks to that, my wife and I are able to carry on our existence. So I am very grateful for all of this.”

Brian Moss, Honorary Vice President

In 1982, I did a study tour around five countries looking at residential care for people with severe dementia. I met with Jerry Stone who had been one of the founders of the American association and we talked at length. When I returned home I got involved in setting up a similar body in the state of Victoria where I reside and then a national body. I had written to Jerry Stone and he wrote back saying that they were organising a meeting in Washington D.C. with a view to forming an international association. I think we had about six representatives at that meeting from Australia. At the meeting, they agreed to go ahead and form an international body and ADI was born.

The Americans and Canadians collaborated to write up the bylaws and the first draft was presented to a meeting the following year in New York. At the first meeting in Washington, because I was the convenor and had become the Chairman of Alzheimer's Disease Australia, I was appointed as a Vice President representing the Pacific region.

In 1987, we had another meeting in Chicago. Princess Yasmin Aga Khan never chaired a meeting and we didn't have a Chairman as such. As I was a Vice President, they asked me to chair the meeting. I must have done something right because I chaired subsequent meetings and was formally appointed Chairman when we adopted a new set of bylaws in 1990. I was Chairman until 1996.

When I first became involved, ADI was very embryonic. It was very interesting, very challenging. The American association offered to facilitate the workings of ADI from their office, but I always felt that it didn't get enough attention. We would resolve things at meetings and, twelve months later, not much action had followed. Later the Americans offered to pay for a Secretary General and nominated Rachel Billington who had been on their staff and was their Chief Executive at one stage. That was a help because at least we had someone who we knew could get on and do things. At the meeting in Edinburgh in 1994 we accepted an offer of the UK's Alzheimer's Disease Society to act as the secretariat and employ a Secretary General based in London. I think some of the Americans weren't too happy about that because they could see themselves losing control, but it was the best thing we did because we were able to move on and get things organised.

There's been enormous change within ADI since I became involved, particularly the growth in membership. At the beginning we had four members and, when I retired as Chairman in 1996, we had forty and now there are seventy-one. There have also been a number of changes to bylaws. We had several changes over the years, but bylaws should always be under review as things develop.

ADI is special because it is an international body helping people from all different countries develop services. It is facilitating and one of the wonderful things about it is that one country has been there and done that and learned a process and can share and tutor another country. You don't see that happening in other fields. The international society is sharing and caring for its members.

I think funding is the main challenge ADI faces, particularly maintaining a commitment from member countries. Some countries might get a little frustrated, 'we work hard to raise our own funds, why should we be contributing to ADI', but I think if you want ADI to have that special purpose it has to have adequate funding to do the job.

Unfortunately, because nobody has been able to put their finger on the cause there is going to be a huge growth in the number of people with dementia. I hope that somebody discovers how to prevent it and in the next 25 years we may come to a point where ADI doesn't need to exist. I doubt that will happen, but if it doesn't happen then I'd hope that ADI can continue to grow and attract the funding that's necessary to finance the work that it does without having to beg and scrape money from different sources.

Orien Reid, Former Chairman

Interviewed by Shivani Nandi

Orien Reid first joined ADI as a representative from the USA attending ADI's conference in Johannesburg, South Africa in 1999, as Chair of the Alzheimer's Association. Invited by Nori Graham to observe the Executive Committee meeting in 2000, she was surprised to see “such a small budget” for such a large international organisation! In 2002, Orien was elected Vice Chairman of ADI. The then Chairman, Henry Brodaty, requested she serve as Chair of the Governance Committee entrusted with reviewing the governance structure of ADI. One of the responsibilities was to develop recommendations for involving people with dementia – the results of which were clear at the 2001 ADI conference in New Zealand. She was then elected Chairman of ADI in 2005 to serve a three-year term. During this period her goal was to make ADI a stronger and more efficient organisation and to raise the profile of ADI, including enhancing the involvement of people with dementia.

Orien has had four family members with Alzheimer's disease – grandmother, mother, aunt and an uncle. She felt that the most positive, constructive way to address the disease was to get involved herself. She became a volunteer for the Delaware Valley Chapter of the Alzheimer's Association in 1990, organising its first Memory Walk in 1991. Orien's volunteer efforts with ADI have given her a broader appreciation of how Alzheimer's disease is viewed and managed around the world. “In the USA we tend to assume that we have the best of care. I am impressed with the attitudes toward ageing in Chinese Taipei, Japan and South Korea. I have a better understanding of the nature of the disease and how other societies address it.”

When Orien first became involved with ADI, she “was sure the budget must have been in millions” and says she was shocked when she saw the annual report. She sought confirmation from Nori Graham, thinking there must have been some mistake. Upon being told that the budget was indeed around US$350,000 per annum, she jokes that, it “blew me away”! At that time ADI had only 4 full time staff. At one time ADI had a staff of 6, and “that itself was a 50% growth!” she said. Despite the small budget and staff, ADI has continued to show tremendous commitment to the various programmes.

ADI, Orien feels, has truly snowballed into a global organisation. She drew the interest of GE Healthcare in the USA through her presentation about ADI's activities when she introduced this global patient-focused health care advocacy group with a focus on dementia. GE Healthcare subsequently provided funding and resources for the 2007 Advocacy Alzheimer University. From that Alzheimer University programme came a direct effort focusing on the World Health Organization to make dementia a global health priority.

Having the right “profile” is what she feels is the main challenge facing ADI now. Her goal while serving as Chairman was to significantly increase ADI's international profile, and this undoubtedly involves funding.

Orien attended ADI's annual International Conferences from 1999-2007.
Orien believes that, while each conference is special, the one that made a difference was when Christine Bryden, a person with dementia, gave the keynote address in New Zealand in 2001: “It fundamentally changed ADI, making it a world leader in involving people with dementia”.

Orien wishes that every country around the world be represented in ADI over the next 25 years, considering the growth in the sheer number of people with dementia over the next 20 years. Africa isn't well represented at present and she would like to see more African countries become members. ADI's goal is to improve the quality of life of carers and people with dementia around the world. Without the presence of associations in those countries, it will be difficult to fulfil this task.

Jacob Roy, India

My association with ADI goes back to 1992. My first contact with the charity was through Rachel Billington, then Secretary General, who was based in Chicago, USA. That was the year the Alzheimer's and Related Disorders Society of India (ARDSI) was formed. We gained provisional membership of ADI and then, in 1993, we travelled to the ADI conference in Toronto, Canada, where we were admitted as full members.

We were the first Afro-Asian Alzheimer association to become full members of ADI. I vividly remember attending the ADI Council meeting in Toronto where I was the only brown-skinned person. I mention this not because it was a problem, but to show how under-represented my part of the world was in ADI in those days.

Soon after the Council meeting Nori Graham, who was then Vice Chairman, walked up to me and extended an invitation to visit her in London on my way home. I still remember the warmth and fellowship I experienced during these visits. I became a member of the Executive Committee in 1996, took the role of Vice Chairman from 1998 to 2001 and continued to serve in various capacities within ADI until 2009.

Over the last 16 years I have seen ADI going from strength to strength. Initially the majority of ADI members were from developed nations, but gradually this has changed. With 71 members, ADI has now become truly international. Through its international conferences, meaningful workshops and advocacy role, ADI has started to address the real challenges of emerging member organisations. ADI - its staff and members - now show a greater understanding of the problems faced by Alzheimer associations in the developing world.

I think ADI is special because it works like a global family. It's the mouthpiece of the global dementia movement.

Not surprisingly, the ADI conference I remember most fondly was the 14th ADI conference in Cochin, India. I was the organising secretary. It was the first ADI conference in Asia and one of the few ADI conferences held outside a national capital. The event was attended by delegates from more than 50 countries and was organised with a real blend of local tradition and culture. It was at this conference that the 10/66 Dementia Research Group was formed and where the first Asia Pacific regional meeting was held.

There are a number of countries in Asia - and more in the Middle East and Africa - where ADI still has little representation. Extending ADI into these under-represented areas will be a big challenge. Another issue is how to make ADI financially stable and less reliant on pharmaceutical industry support.

In the future, I would like to see ADI emerge as an even stronger international organisation. It is the platform for all those working for and with people with dementia and their families around the world so it should be able to influence world governments to make dementia a health priority. It needs to help each member country develop its own national dementia strategy and assist in putting this into practice. I would like to see a world where dementia is a treated on a par with other chronic diseases like cancer or stroke, where people speak openly about the condition and where all those affected receive a timely diagnosis and appropriate treatment and care.

Elizabeth Rimmer, Former Executive Director

I was Executive Director of ADI for 10 years, from May 1996 to August 2006. When I first started, I was the only member of staff. I joined ADI as a part time assistant to the then Executive Director whilst studying for an MA. Within a few months the Executive Director left and I was offered his job. ADI had 39 member countries and an annual International Conference, but no regional meetings, website or membership development programmes. It was quite a chaotic, frantic place where, at times, I felt like I was the jack-of-all-trades and master of none. The first time I met Princess Yasmin Aga Khan was at my first ADI conference in Helsinki in 1997. I was the only member of staff there and she helped me set up the room for the Council meeting, arranging the tables and putting out the papers. It was all hands on deck.

The office had just moved to London from its first home at the national office of the USA's Alzheimer's Association in Chicago. Gradually the ADI team developed and we took on more staff. I'm pleased to say that I managed to install the first email system (we had no computer support staff at that time!) and, together with Julian Howell, ADI's designer, established ADI's website. Michael Lefevre joined the team and we worked from tiny rooms in the London regional office of the UK's Alzheimer's Society. It was a glorified broom cupboard. Then Susan Frade joined us. Admin, in particular, was really hard work. In the beginning, everything was done by fax. It would take over 2 hours to send a memo out to all our members; numbers would fail to connect and we'd have to start all over again.

The biggest change was ADI's rapid growth. Membership nearly doubled in ten years and the team grew to six full time people. We established regional networking and meetings. World Alzheimer's Day, initiated in 1994 to acknowledge ADI's tenth anniversary, has gone from strength to strength. During this time, we started the Alzheimer University, which was expanded to serve the needs of both developing and established members. Martin Prince founded the 10/66 Dementia Research Group, which formally became associated with ADI. Another of the most significant developments has been the gradual and increasing level of involvement of people with dementia. ADI led the way in encouraging members to actively reach out to people with dementia and involve them in governance and development of services.

I oversaw ADI's move into its own premises, to the current site. I remember feeling that the office move was a big deal: for the first time we were paying our own rent, standing on our own two feet. We felt independent and responsible for our own development. ADI was really taking off.

For me it's the people that make ADI special. The collective sense of a common purpose, despite cultural and language differences. The generosity members have towards each other in terms of sharing knowledge and resources. I am always amazed at how the experience of dementia links people together to achieve the most incredible things. Everyone you meet within the ADI world: carers, people with dementia, staff and volunteers of associations and researchers all feel so passionately about the cause. Countries that are in conflict with each other on a political level are brought together by ADI. I think organisations like ADI contribute to the development of global civil society as they encourage people to respect each other, work together and learn from one another.

I have many fond memories, but some of my fondest and most amusing anecdotes come from the 1998 Cochin conference. I arrived in India in January 1998 for a site visit; it was also my first time in India. I was taken to see the conference venue - a big expanse of earth with lots of sticks coming out of it and thousands of people milling around. I had some doubts that the building would be finished in time (the conference was fixed for September that year) and asked if there was a back up site. I was reassured by local organisers that this was not necessary as 'this is India, it will be finished.' I went back in July and there just seemed to be more sticks in the ground and more people, but I was reassured that the owner of the venue needed it finished for his daughter's wedding, which was the week before the ADI conference, so it would happen. And it did!

I would say ADI's biggest challenge is raising awareness and breaking down the stigma of dementia, which in many countries is still an issue. Ensuring that when people with dementia and their carers come forward there is help available and trained healthcare professionals to support them. The strengthening of Alzheimer associations continues to be a priority. Each country needs a strong national Alzheimer association.

In the future I would like to see the strengthening of Alzheimer associations so that each country has a strong national body that can work with governments and advocate for the rights and needs of people with dementia. Dementia needs to be on the national health and social care agenda of every country. I also think ADI should develop stronger regional networks.

Most importantly, I think ADI has role to play in ensuring that the advances and developments of treatments and support for people with dementia and their families are available to all people worldwide not just those who live in developed countries. I would like to see ADI work with others to bridge that gap.

Jerome Stone, Founder and Honorary Vice President

Interviewed by Shivani Nandi

Throughout the history of the formation of Alzheimer's associations and their chapters worldwide, it is usually individuals directly affected by the disease in some way or other who have come forward to forge their commitment. One such pioneer is none other than the founder of ADI, Jerome Stone, whose late wife had been diagnosed with Alzheimer's disease back in the 1970s at the early age of 50. With some bare bones support from people struggling with the same problem, he decided to do something about it and started sharing his experience with interested people all over the USA. With no organisational support whatsoever in the beginning, it was around 7-8 years before the National Institutes of Health in the USA took notice and eventually called together like-minded people interested in Alzheimer's disease to form the Alzheimer's Association in New York, followed by Chicago in 1980.

Jerry Stone became Chairman of the USA Alzheimer's Association amidst keen interest also generated from other countries about their activities. In 1984, at a meeting in Washington, representatives from existing Alzheimer associations in Australia, Canada and the UK joined the Alzheimer's Association with observers from Belgium, France and Germany. He was pleased when Princess Yasmin Aga Khan accepted his offer to become the President of the organisation. This also gave ADI the opportunity to gain increased publicity as Princess Yasmin spoke of her experience of caring for her mother.

In the very beginning, Jerry remembered ADI operating as an extension of the Alzheimer's Association. Nonetheless, there was a lot of strength and unity, and efforts continued to grow its membership from other countries. It would take some time before ADI was duly recognised by other organisations such as the World Health Organization. That was certainly the stage of maturity and brought with it benefits of making the cause known throughout the world.

Jerry sees that ADI's growth over the 25 year period from 4 to 71 members as testimony to the devoted efforts of inspired people around the world to help others. He hopes to attend the ADI International Conference in Toronto in 2011 and, even though he would have liked to attend the 25th anniversary celebrations, he is somewhat limited in his travel now due to being diagnosed with Parkinson's disease a year ago.

Jerry believes that the main challenge facing ADI in the future is finances. While he is pleased that ADI has been able to balance its budget, he feels the time is ripe to have “foundation money” involving contribution from donors interested in extending long-term commitments. With a current low budget of 1 million US dollars a year, Jerry believes that doubling the budget is imperative. He is full of praise for the ADI staff and had special commendations for Marc Wortmann, the current Executive Director, who has been “a very good spokesman for the dementia movement”. Jerry also feels that it is special to have an international group making up ADI's Medical and Scientific Advisory Panel, enabling people from countries with insufficient access to obtain valuable information.

Jerry reminisces about ADI's International Conference, explaining that, “I myself have made many personal friends, like Nori Graham, Henry Brodaty and Lonnie Wollin through the years”. He feels that Orien Reid brought her own individual stamp to the organisation as a very articulate spokesperson. “I am proud of all these people that I have worked with and that ADI has grown far beyond my influence.”

His favourite anecdote from an ADI conference was in Brussels, Belgium. The meeting venue was a centuries old university chapel. There was the feeling of recognising centuries of interest in morality and progress. He remembers with fondness the wonderful social affairs connected with that meeting. One of the organisers personally took a couple of the Alzheimer's Association Board members to the historic city of Bruges, which included a meeting and lunch with the mayor. It was a most “romantic luncheon spot” for furthering understanding and friendship. As he mused about walking the streets of this hallowed ground and seeing the old canals as a hallmark, he wondered if ADI would stand the same test of time as that romantic city.

Jerry believes that the main challenge facing ADI in the future is finances. While he is pleased that ADI has been able to balance its budget, he feels the time is ripe to have 'foundation money' involving contribution from donors interested in extending long-term commitments. With a current low budget of 1 million US dollars a year, Jerry believes that doubling the budget is imperative. He is full of praise for the ADI staff and had special commendations for Marc Wortmann, the current Executive Director, who has been 'a very good spokesman for the dementia movement'. Jerry also felt that it is special to have an international group making up ADI's Medical and Scientific Advisory Panel, enabling people from countries with insufficient access obtain valuable information

Jerry's hope for the next 25 years of ADI is that the organisation will achieve worldwide renown for its stature and efforts. To do this, he feels it is important for ADI to “Keep doing what they are doing and more of it. ADI is now an organisation that is set up to do even more global things in a systematic way. We just need to find a way of balancing the finances with the need”.

Where next?