All Aboard: The importance of local engagement to address a global health challenge

Paola Barbarino joined Alzheimer’s Disease International as CEO in 2017. We were delighted to speak to her as she completed her first year in the role and hear about her experiences, the challenges and opportunities, and ultimately her vision for the organisation to raise awareness and reduce stigma of dementia.

Having worked across many geographies and sectors Paola talks about the opportunity to deliver real global change at a fundamentally local level. As a member organisation she highlights the importance of an active participation model and her determination to really understand the members and how their own cultures and geographies impact their approach.

 

It is almost a year into you becoming CEO of Alzheimer’s Disease International (ADI). What are your key reflections from this period. How has the organisation, and your role within it, developed?

When you start a new job as a CEO you are trying to board a train that is running, and you have to understand that there are often many things in motion of great importance. In my first week, ADI was at the apex of a piece of work lasting several years, in which we had been advocating to the World Health Organisation (WHO) for the international adoption of a global action plan for dementia. This is a very powerful tool, but it was in development for a number of years before I joined and I had to write a statement about this piece of work as one of my first tasks. The action plan got unanimous approval, and a large part of my work initially was thinking about the challenges this poses, translating what it will mean practically and what we can do to deliver it.

At this point I wasn’t just thinking about the very immediate future. I wanted to look ahead ten years and think about what success would look like. I had to shape this quite quickly. I wanted to take the global action plan beyond a piece of paper. I want it to be adopted into the healthcare systems in every country to make it work better for people with dementia and their families.

From the outset one of the most important things for me was to understand the narrative of the organisation to date and what it had achieved. I had to understand the history of an organisation that was founded and funded by four members before moving to undertake advocacy at an UN level, before becoming a real international network and growing into the membership organisation that ADI is today. It is now a major social and economic content creator, compiling significant information about the prevalence and incidence of dementia used by organisations to advocate governments all over the world.

Developing this narrative seemed to resonate with people and allowed me to work more closely with the team and individuals to understand what was missing in our multi-lateral and regional relationships and how we could look to address these in years to come.

One of the of the most important decisions I made early on was trying to devolve some time to meet as many members as possible. This was challenging as it meant a lot of travel but having run a membership organisation before I knew it was really important to understand who your members are; what aspirations they have; what their challenges are; and whether the agenda you are setting for yourself really reflects the global priorities. We have to very clearly understand whether these priorities resonate with the members or not and how can we translate them from an international level to a regional and local perspective. In the first six months I spent quite a bit of my time visiting regional conferences and events to meet as many members as possible.

That initial period of my journey is now almost complete and I am at the point where I am able to finish my business plan.

I have worked previously in international development and I have seen treaties signed and co-signed and nothing happens to take them forward. I really want us to make progress and that is why I joined ADI as I feel I can make a difference.

Your own leadership career has traversed different sectors and geographies. How do you believe this has influenced your approach at ADI?

My two previous roles to ADI were at LIFE, a membership organisation gathering Lebanese financiers in the diaspora, and Cass Business School where I looked after individuals and institutional relationships. I do firmly believe that these organisations shaped the way I think. When you are in a membership organisation you usually end up with one of two different types of model – an active model where there is a strong level of engagement and interaction with members; or a passive model where the interaction is more minimal and membership is more symbolic than functional. At ADI, the strength of our organisation lies in our wonderful network with which we share information and learnings. This is not always the case with International Non-Governmental Organisations (INGOs), some of which don’t necessarily always reflect the views of an international network.

I would personally say our active model is fundamental to the success of ADI. I enjoy that type of model, and when you are in a network of 90 nations, you need to try and engage actively. As well as 1:1 meetings with our members one of the first things I did when I joined ADI was to commission a survey of members to better understand their satisfaction levels. Four months on, we have a great amount of data about the relationship with members, including what they would like to see and what they think we can offer them.

For me as an employer it is always important to see what kind of prospects outside sectoral experience might bring. However, as I have not come from healthcare I needed to ensure for ADI that there I had the right collaborators with relevant healthcare experience in my team.

Ultimately, when joining a new organisation, you need to think strategically about what you can do best to take it forward. Whether it be new partnerships, introducing new skills to the team, or cross-sectoral experience, you need to think about what strengths you have and what you can do. In a relatively small INGO you also don’t have the luxury to wait and see, you need to act relatively quickly to capitalise on action effectively.

 

As a global umbrella organisation, what would you highlight as the key opportunities and challenges that you face when delivering a consistent global approach across local communities and organisations?

The cultural differences which exist across our member communities and organisations are absolutely key to understanding and preparing how we deliver programmes and share learnings. We have international initiatives and programmes that we run, but we need to ensure that we are delivering these appropriately at a local level.

One of our key international programmes is the Alzheimer’s University. It is a wonderful initiative where we help organisations, especially from lower or middle-income countries, who traditionally don’t have experience of civil sector society. The programme is comprehensive and covers a wide range of topics such as charity effectiveness, good governance, transparency and accounting, fundraising and communication. It is a complex initiative, but it is aimed at helping these organisations to grow. When they are bigger and more established, another programme is then offered to teach them about advocacy and talking to their governments. This creates a joined-up approach, and supports the wider international advocacy work that ADI is doing with the UN, WHO and others.

This is a very important part of the work that these local organisations do, but I have realised that we need to look at how this works in each country and make it relevant in the context of their own governmental and cultural environments. We are considering ways of making this activity more localised in the next year, rather than running it solely as a global programme. This is not without challenges however. Trying to find trainers to talk about political situations in their own countries to demonstrate how advocacy can be effective can be challenging. However, it is something that we are committed to doing as we believe it will create real value and provide actionable outcomes to help in reducing stigma towards dementia. We need to ensure that our thinking is relevant and understandable to our members and that it provides them with the instruments to talk to their communities, both clinical and political, as well as those patients and families they are supporting.

Across our organisations there are countries of excellence. Costa Rica and Chile, for example, have been amazing at picking up certain areas of human rights policy and embedding and enshrining it within their national approach. Costa Rica has created councils of senior citizens to help legislators differentiate on how policy should apply to them. Dementia education is embedded in the hospital settings and is incorporated into curriculums within universities. I went to visit the country’s President, Luis Guillermo Solis, to acknowledge the work he has done in this area and to invite him to be an ambassador for ADI, which we are delighted that he has accepted.

Other countries that are excelling in their approach to dementia include Indonesia, Netherlands, Finland, Sweden, Spain, Scotland and Kenya, which is a more recent member. All of these countries are doing a lot at both local and government level.

At our global conference in Chicago in July this year we worked with all our members, academics, researchers, people with dementia, carers and the general public to showcase examples of excellence that may be shared more widely. ADI’s conference (www.adi2018.org) is the oldest global dementia conference in the world and still one of the largest.

Can you outline briefly how you facilitate and encourage knowledge sharing across your member organisations to share local knowledge to a global network. What benefits does this bring to ADI and its member organisations?

You have to start with the basic building blocks and recognise that while there are priorities, there are also limits to what you can do with an organisation. Nevertheless, we firmly believe that if there is an opportunity to make a greater impact you should always try. For me, one of the most exciting things about working for ADI is when I hear about projects that have long-lasting, complex impacts: that is when we need to think about how, as an international organisation, we can make it work both globally and locally. Practically, at the local level there need to be guidelines and people who go round and train others as well as raising awareness of the organisation and dementia more broadly.

Dementia is a global issue and has an impact on so many areas. It allows for discourse and conversations across other healthcare issues, palliative care being one example. We have the chance to help each other on common issues, but at the same time for ADI we always do need to think about how it will impact on the dementia agenda.

One very good example of knowledge-sharing is a concept that was developed a number of years ago in Japan: ‘dementia friendly communities’. Japan is one of the most advanced countries in the world where dementia is concerned, as they acknowledged the problem the earliest. The idea is to mobilise wider communities around people, patients and families who might need support. It is a very local, simple way of responding to an international crisis.

The concept was shared at one of the ADI conferences and several of the ADI members have taken it on board. Now this model is being promoted across the world. The power of this network is incredible. It has been a great example of taking something that works in one culture, picking it up and sharing it with another culture.

 

As the profile and awareness of Alzheimer’s and dementia increases dramatically, how does this impact the work and approach taken by ADI? Does this differ across geographies?

In the UK we have a far greater awareness of Alzheimer’s and dementia with wonderful organisations like Alzheimer’s Society, Alzheimer’s Research UK, Dementia UK and a lot of smaller organisations who have the ability to mobilise the press. In some other countries they don’t acknowledge the existence of dementia, not in media or even at government level. The reality is that in a lot of the world there is still a huge amount of stigma around dementia and many countries are in denial about the problem. Reducing this stigma and raising awareness of dementia is absolutely going to be a priority for me.

One of the things that we have done is to look at other illnesses like HIV and cancer to establish when they managed to beat the stigma. We don’t want to be reinventing the wheel, so we are looking at what lessons we can learn. It seems clear to me that when diagnosis leads to a clearer path of care, there is a greater understanding of the illness, and it is therefore more accepted and the stigma reduced.

We advocate for timely diagnosis. We need people to be aware of what is happening to them, but we need to show that there are still things they can do and support that can be provided. There is so much we can work on, but it does also require doctors to be better informed of the after-care options for dementia. This is something that is happening in Scotland, a country that is leading the way in this area. It is one of the best examples in the world in terms of post-diagnostic dementia care and support.

The vast majority of people who work in dementia know how bad the disease is. For those who have not experienced it before, it is difficult to explain what it is like but it is possible, there are plenty of short, awareness-raising sessions available.

At ADI, I think we need to focus on a doing a bit less, but doing it better, rather than being too spread out. An INGO is never going to be large in its team size, so resource will be finite.

 

What would you highlight as your key areas of focus in the next two to three years to help deliver the strategic vision for ADI?

There are three very clear areas for me. Firstly, embedding the dementia global action plan at a national level with all that that implies politically, including advocacy and implementation is going to be a priority.

Secondly, I am focused on developing an active membership model, looking at how we can strengthen the membership and expand it. The targets from WHO are for all 198 countries in the world to be included and as ADI only has 90 members currently we need to increase this. We will be looking at countries like India or China with large percentages of global population. It could make a massive difference just by getting one country member like that on board to adopt a new policy or initiative.

Finally, but possibly the most important area, is raising awareness and reducing the stigma of dementia. We have been doing a number of things in the past six months to address this, such as increasing communications and our social media. One of the most exciting awareness raising projects we will do this year is partnering with ITN Productions to make a news and current affairs-style programme exploring the risks, growth and future response to dementia. ’Every Three Seconds’ premiered at the 33rd International Conference of ADI in Chicago on 26-29 July 2018.

As an INGO we have adopted a business-to-business style approach in the past, but more people are coming to us directly, our website is one of the most visited globally and we need to have more specific targeted engagement with members of the public. This is a big challenge, but one that we need to tackle directly and as a clear priority.

 

PAOLA BARBARINO
Biography

Paola is the CEO of Alzheimer’s Disease International. Prior to that, she was CEO of LIFE. Her previous senior positions include Cass Business School, Tate, British Library and IIED.

She is a Trustee of The Postal Museum and Lauderdale House. Previously she was a Trustee of Shelter, the UK housing and homelessness charity and of MLA London. She is also the Managing Director of Opaline Limited, a consultancy company specialising in strategy and governance.

She holds a degree cum laude in Classics from the University of Napoli Federico II, an MA in Field and Analytical Techniques in Archaeology and an MA in Library and Information Science both from University College London.

Return to previous page