Let’s Talk About Dementia Research: Your Questions Answered

In November last year, ADI held the first in a series of global webinars: Let’s Talk About Dementia Research: Demystifying Trials, Access and Understanding.

We created the series to provide a unique opportunity for the public and Alzheimer and dementia associations to engage directly with health and social care professionals, as well as companies involved in dementia research.

As far as we know, no other webinar has provided such ‘public to professional’ access before.

We heard from the pharmaceutical industry, researchers and clinicians conducting research and clinical trials, as well as primary care health professionals supporting patients and families. Most importantly, we heard stories of people living with dementia and their care partners about their lived experience. 

During the webinar, we invited participants to ask our panel their most pressing questions. Whilst we were able to cover many of these topics live, in the lead up to our second webinar: Let’s Talk About Dementia Research: Global Barriers and Access to Trials, we wanted to respond to some of your unanswered questions.


Meet the panelists:

Professor Craig RitchieChair, Psychiatry of Ageing, University of Edinburgh and Director of the Centre for Dementia Prevention

Piers KottingProgramme Director, Office of the National Director for Dementia Research, National Institute for Health Research (NIHR)

Dr Gayle Madden, Professional and Practice Development Facilitator, Dementia UK

Alison SearleOperations Program Leader, Roche

Eileen and Dubhglas Taylor, sharing their personal experience of dementia trials. They live in Australia and are retired Social Workers, who are actively involved in dementia advocacy both nationally and internationally.

Paola BarbarinoChief Executive of Alzheimers’ Disease International (ADI


Your Questions

Q. The lack of psychological support at the end of a ‘failed’ trial struck me in the testimony of Eileen. There’s still an urgent need to build more bridges between the psychosocial field and the biomedical field. Wouldn’t that facilitate a more integrated approach of involvement in clinical trials?

A.

Eileen and Dubhg:

During the trial, which lasted over five years, the support was amazing. There was a real sense of inclusion with the trial staff and the rest of the group. Along the way, we strongly identified with Tuckman’s model of group development – a universal model which includes five stages of group development: forming, storming, norming, and adjourning/ mourning. At the end of a trial – the adjourning/ mourning stage – there is often heightened emotionality. There is a real sense of loss, regret and grief, including feelings of denial, anger, sadness, bargaining and acceptance. Yet this stage often appears to be ignored by researchers. Without a debrief which acknowledges and validates the experience, the process of acceptance takes longer. We believe clinical trial researchers need to address this important issue of post-trial experiences and facilitate a smoother transition for participants back to ‘normal’ life.

Alison:

In the event of negative trial, we do need to think carefully about how we communicate. Pharmaceutical companies provide information to the researchers at the hospitals, but we can’t provide information direct to patients very quickly because everything that we provide has to be reviewed by an Ethics Committee. What we could do is provide lay language information on why the trial failed and highlight what we’ve learnt from it to help future research. 

Gayle:

Building bridges between fields is an ongoing challenge.  In my experience, research nurses are the people who will support families when trials are unsuccessful or people have to withdraw, and we work closely with study doctors (who may be the ones to tell the participant the news). 

I believe good communication is essential between all professionals at times like this and using person-centred, compassionate interventions is what will help families.

Q. Eileen and Dubhg talked about a language barrier between researchers and participants of research trials. In what way does this barrier contribute to the Alzheimer’s diagnosis? Has there been an evidence that a language barrier between a specialist and the patient/carer could delay a diagnosis?

A.

Eileen and Dubhg:

Researchers need to be aware that people living with dementia can be sensitive to language. The Language Guidelines have been around for a few years now, yet we still see researchers referring to the person with dementia as the ‘patient’. The word patient should not be used outside a medical context, especially when the research is not a drug trial. Even then, the person would often prefer to be described as a ‘participant’.

Frequently, people living with dementia are described as ‘suffering’ with dementia or being a dementia ‘victim’. Although people may ‘suffer’ and at times feel like ‘victims’, the use of positive language is paramount in reducing stigma surrounding the diagnosis of dementia.

Craig:

I think that the main barrier noted was between the clinicians and the researchers. Eileen and Dubhg mentioned that they were sent to Melbourne from Brisbane for a trial when the trial was open in their own city. I think that this type of communication needs to be fixed globally – i.e. bringing together clinicians and academics into the same mindset, or maybe even work space. I think the barrier they may also have noted is because research criteria and clinical criteria for Alzheimer’s disease and Alzheimer’s dementia are not 100% the same. This is a key issue we need to address and may be worth bringing up on the next webinar: Let’s Talk About Dementia Research: Global Barriers and Access to Trials.

Q. Are the drugs being trialled generally to cure or prevent?

A.

Alison:

It depends on each individual drug’s mode of action to some extent, but the field started off treating later stage disease and has been moving to earlier stages and most recently towards prevention.  Prevention requires us to be able to successfully identify patients at risk of developing AD.

Craig:

The drugs being trialed that attract most attention in the media are to alter the course of disease. At this stage we do not anticipate ‘cure’ i.e. the complete removal of pathology – but we do hope that we can slow the course of disease to such an extent that a dementia syndrome doesn’t occur.

When we use the term ‘prevent’ we have to be clear what it is we are trying to prevent – if it is the very earliest stages of brain disease – then that is primary prevention – the drugs we are trialling are for secondary prevention; that is you have some early brain disease but no or only mild symptoms – what we are trying to prevent in that scenario is onward decline to developing more severe symptoms.

Read more from Craig on the topic of prevention in ADI’s World Alzheimer Report 2018: The state of the art of dementia research: New frontiers

Q. What are the common assessment tools/ tests for persons with dementia?

A.

Gayle:

There are many different assessment tools that can be used in studies and the type of study will influence which ones are chosen. The most common are separated into assessments for the person living with dementia and assessments for carers/family members to complete. Carers might be asked questions about how the person with dementia is managing on a day-to-day basis plus their own quality of life and that of the person with dementia. Tests for people living with dementia will involve testing cognition, memory, concentration, problem solving and asking them about their quality of life. 

Some examples are the Clinical Dementia Rating and Bristol Activities of Daily Living scale

Q. Do you think there is a selection bias in recruitment and selection of people living with dementia into research?

A.

Piers:

There is evidence that people with dementia included in clinical research are younger than the general population, and that there is an under representation of people from certain ethnic groups.  There are concerns that the way dementia is identified and categorised in clinical practice may present a section bias, particularly for treatment trials recruiting through memory clinics – often those in towns and cities linked to academic centres.  Registers of people who have prospectively consented to being contacted for research are becoming increasingly popular. While they have some great benefits they also present risks of selection bias. For example people registering may be more likely to be those who are more pro-actively engaged in the management of their condition, or who have higher levels of education.

Alison:

There is certainly a lack of diversity within clinical trial populations in terms of race, and socioeconomic status.  There are multiple reasons including language barriers, cultural beliefs, ability to cope with the burden of trials and healthcare systems.  There are a number of recent initiatives to look at this in more detail, but it’s definitely something we need to work on.

Q. It seems that the participants are requesting more of a relationship within the research process. Doesn’t that conflict with the concept of objective data collection? Treatment and research are not the same thing.

A.

Craig:

Not at all. Researchers and potential participants must work closely together to agree on the key priorities, feasibility and acceptability of the study, retention, dissemination of findings and feedback on participation. None of that will undermine data quality – there is only an upside to greater integration of researcher and participants.

Piers:

While it is important to ensure that data is collected objectively and in accordance with protocols, it’s also understandable that people participating in research may want more out of the experience. On one hand it is often a benefit for people participating in research that they get more frequent contact with clinicians, or that they learn more about their disease.  On the other hand, we need the involvement of research participants – and potential participants – throughout the process to support it, for example in the design of the study protocols and literature.  It is completely reasonable for people to expect feedback about the research throughout their participation.  We need to become more sophisticated in understanding the most appropriate level of engagement and make sure that people taking part understand what they can and can’t expect. 

Q. Are there any resources you would recommend for finding out more about dementia research and clinical trials?

A.

Paola :

For dementia research, I’d recommend starting with ADI’s 2018 World Alzheimer Report: the state of dementia research: New frontiers. At the back of the report, we’ve included a full list of the interviewees, who work for a range of key institutions in dementia research. Most will have their own references, pages and social media to follow.

For clinical trials, start with our web page and related references and links, and follow the discussion in our upcoming second webinar.


Missed the live webinar? Watch for free on the ADI website.

ADI’s next global webinar: Let’s Talk About Dementia Research: Global Barriers and Access to Trials will be on 8 February 2019. Building upon themes of our first webinar, we’ll discuss the barriers, enablers and opportunities in dementia research around the world. Again, there will be an opportunity to ask your questions and engage directly with health and social care professionals, as well as companies involved in dementia research and clinical trials.

Join the webinar via Zoom and sign up for email updates.

ADI would like to thank Roche for their generous contribution towards the running of our dementia research webinars, enabling us to open the debate on this important topic.

“Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly

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On 23 May 2018, Alzheimer’s Disease International brought together government delegates, civil society, students and importantly, people living with dementia and carers, in the Palais des Nations in Geneva, for our official side-event to the 71st World Health Assembly (WHA71).

Mobilising Society: Inspiration for national responses to dementia was a particularly significant event for dementia advocacy and the advancement of dementia on the global agenda, as it was the only event at the WHA this year dedicated to highlighting dementia as a global health challenge. It also marked two important occasions: first year anniversary of WHO’s Global action plan on the public health to dementia 2017-2025, and of ADI’s new report: From plan to impact: Progress towards targets of the Global plan on dementia 2017-2025. Continue reading ““Progress can only happen when there is close collaboration”: ADI at the 71st World Health Assembly”

Elevator pitch: A short story about the needs and hopes of Africa

Paola Barbarino, CEO, explains why stigma presents a major challenge for addressing dementia in sub-Saharan Africa – and how taking an elevator can lead to greater support.

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During my recent trip to attend the 4th Sub-Saharan African Regional Conference of ADI in Nairobi, organised in partnership with Alzheimer’s Kenya, I stayed at a local hotel with several African members of ADI. During the conference we had heard and shared experiences about serious issues of stigma and denial surrounding dementia in the region and how difficult it was to persuade the governments to do anything. That said, the Kenyan government committed during the conference to promoting an action plan on dementia by mid-2018, thereby proving that if people get together they can act as a catalyst for good.

The team had just returned to the hotel after a very intense session. On the television in the hotel lobby, the BBC were breaking news of a new study which suggests there is a link between the loss of the sense of smell and possible development of Alzheimer’s disease. We all cheered as any step forward, no matter how small, really makes a difference in our community, forever hopeful for a solution. Continue reading “Elevator pitch: A short story about the needs and hopes of Africa”

Why a Global Action Plan on dementia is so important

Originally published 19 December on the Biomed Central Network.

Dementia is the name of a group of progressive diseases that affect cognition and other crucial functions of the brain. Alzheimer’s disease is the most common cause of dementia, followed by vascular dementia, dementia with Lewy bodies and Frontotemporal dementia (FTD). Age is the main risk factor; there is a change of 1 in 15 at the age of 65, increasing to 1 in 3 for those over 85.

As our world population rapidly ages, there are a growing number of people who develop dementia. Research showed that in 2015, there was one new case of dementia somewhere in the world every three seconds. This is four times as much than new cases of HIV/Aids. There is currently no cure for dementia.

The impact of the disease is huge. First of all on the individual, who may step by step lose the grip on his or her life. Then for the family, who are in most of the world the overwhelming majority of those who care for a person with dementia, and finally for society, that has to deal with growing group of people seriously in need for care and support. Continue reading “Why a Global Action Plan on dementia is so important”

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

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.