Alzheimer’s disease has attracted loads of attention lately due to its increasing societal burden. Following last week’s announcement of another failed attempt to find an effective treatment, BioStock has spoken to a number of experts in the field to get a broad and diverse view of the challenges and opportunities for the Alzheimer’s research going forward. In this first segment of a three-part article series, we meet Liselotte Jansson, the secretary general of Swedish Alzheimersfonden, who discusses the importance of raising awareness as a first step towards improving the life of patients affected by this disease.

Alzheimer’s disease (AD) is one of the major health crises of our time. It’s a neurodegenerative disease, meaning that it slowly destroys our brain cells. The part of the brain that is affected the most is the hippocampus, which is the area of the brain responsible for storing memories. As the disease progresses, patients suffering from AD don’t just forget the little things like where they last left their house keys, but with time they also forget faces of their friends and relatives, and eventually forget how to perform every-day bodily functions.

Incidence increases with age and women are more affected

With age, the risk of developing the disease increases, especially, after the age of 65. Along with other forms of dementia, AD affects roughly 10 per cent of people over 65, and ratio grows to 1 in 3 in people over 85. As life expectancy increases and people get older, the number of people suffering from dementia is expected to triple from now to 2050, reaching close to 150 million world-wide. In Sweden, about 160,000 people suffer from some form of dementia, with AD being the most common, according to the patient organisation Alzheimerfonden.

It is also worth mentioning that two thirds of AD patients are women, a statistic that still baffles scientists. The main explanation for this discrepancy is pinned on the fact that women, overall, live longer than men, but scientists agree that age cannot be the lone contributing factor. Some data point to lifestyle differences between men and women, and some researchers speculate that biological differences play a role.

Heavy burden for patients and their loved ones

The pain and suffering caused by the disease transcends the physical pain felt by the patients – the emotional pain becomes even more burdensome, not just for the patients themselves, who feel life slipping away along with their memories, but also for their loved ones who helplessly see themselves becoming strangers to the patients.

With no cure in sight and with few treatments available for managing the major symptoms, AD remains one of the most feared diseases, not only for the elderly, but also for younger generations who have the luxury of time to take advantage of new knowledge coming out about the disease from the research community.

»There has been an increase in younger patients and relatives of younger patients coming forward with their stories, and this is a worrisome trend. […] I believe that in order to bring more attention to this disease, we have to stop talking about it as a disease that comes with old age« — Liselotte Jansson, Secretary General at Alzheimerfonden

Difficult to develop new treatments

Recent events have yet again proved that it is very difficult to develop new AD treatments. This fact was highlighted last week when Biogen and Eisai discontinued the development of their AD candidate aducanumab when they found it unlikely that the candidate would meet primary endpoints in its ongoing phase III trial.

The event was just the latest in a series of setbacks in the indication area, and those who ultimately suffer the most from the difficulties to develop effective treatments for Alzheimer’s disease are the patients.

Liselotte Jansson, Secretary General at Alzheimerfonden

Alzheimerfonden highlights the life of patients and their healthcare needs

Hence, in this first of a three-part article series, BioStock sat down with Alzheimersfonden’s Secretary General, Liselotte Jansson, to ask her how the patient organisation is involved in the fight against AD and what are some of the most pressing challenges for patients and the development on new treatments.

Liselotte Jansson, could you tell us what is the main goal of the foundation?

– The main goal of Alzheimerfonden is fundraising. A lot of money is needed to finance this area, and we have an important role in financing some of the research done here in Sweden. The lack of funding in Sweden is a huge problem, not just for the research area, but also in terms of patient care.

– Overall, Alzheimersfonden is an efficient organisation, using modern technology but with a personal touch, to break the stigma of living with dementia and give information to the general public about AD.

In what way does your workhelp patients?

We try to help patients not only by allocating funds for patient care and therapeutic research, but also by helping to establish new care and research facilities. In fact, just this February, we shared news that the FINGERS Brain Institute, funded by Alzheimerfonden, has opened in Stockholm with the goal to perform clinical research and develop methods to prevent or delay various forms of dementia.

As we saw last month in Malmö, Alzheimerfonden is also very active in organising events to promote some of the latest research and to raise awareness about the disease. At that event, which BioStock attended, you had a conversation with the wife of an Alzheimer’s patient who told her personal story about how she and her husband deal with his illness. How often do you hear these stories?

– I have been part of the Alzheimersfonden since 2011 and I hear these stories more and more often. In particular, in the past two years, there has been an increase in younger patients and relatives of younger patients coming forward with their stories, and this is a worrisome trend.

– In fact, I believe that in order to bring more attention to this disease, we have to stop talking about it as a disease that comes with “old age.” Researchers suggest that patients are being diagnosed at a younger age because detection technology has improved and it’s therefore easier to spot the disease earlier on.

– This is, of course, true, but I believe lifestyle nowadays has a lot to do with it: diet for example, but also information overload. I strongly believe that, in the future, burnout and the stress that comes from multitasking will be categorized as one of the main risk factors for the disease.

Do you think it is important to make sure these personal stories are shared with the public?

– I think it’s very important because there is a lot of stigma around the disease. Going public with a personal story always helps people truly understand what the disease is all about. This is especially important for breaking the stigma – diseases of the brain are some of the most difficult to talk about, dementia in particular because it leads to losing your personality and your independence.

– Spreading these stories helps people be more conscious about the disease, making them more inclined to take steps to contribute to this cause, either financially or through more awareness.

What are some of the biggest challenges for people living with AD?

– One of the biggest challenges is getting the correct diagnosis and to get it early. There are many types of dementia and symptoms of AD overlap with other diseases. Screening works pretty well in the large cities here in Sweden, but in primary care there is a lack of skilled doctors.

– Getting support from the authorities is also a huge challenge – there are not enough dementia care centres and families get little to no government support to deal with this disease.

»I’m optimistic, but it will take time, and I hope that within 5-10 years there will be a good treatment, perhaps one based on immunotherapy, which seems to be a very promising form of therapy«

Why, in your opinion, has it been so difficult to find a treatment that will stop Alzheimer’s disease symptoms from progressing?

– There haven’t been enough scientists focusing on this, and there is too little money going to the discovery of new treatments. My feeling is that the companies need to recruit subjects who do not have such an advanced form of the disease because, unfortunately, even at the middle stages of the disease it’s too late for experimental treatment to begin.

What are researchers missing and what should they focus on in your opinion?

– Also, for now, scientists are putting all their focus on Aβ and TAU, but they need to be more innovative and widen their scope. It is my opinion that they should look more into how the inflammatory process in the brain is linked to AD.

Looking at the trends in AD prevalence and incidence there is a lot to worry about of course, but is there anything that has you feeling optimistic?

– Yes, I’m optimistic because there is a lot of movement going on in Sweden. We have had a crucial role in building awareness about the disease and getting money into research. So, I’m optimistic, but it will take time, and I hope that within 5-10 years there will be a good treatment, perhaps one based on immunotherapy, which seems to be a very promising form of therapy.

What are some exciting new drug candidates or technologies you have seen being tested for treating or detecting AD?

– As far as I know, BioArctic’s BAN2401 (a monoclonal antibody targeting amyloid beta oligomers) seems to be the best one to rely on at the moment.

BioStock would like to thank Liselotte Jansson for speaking on behalf of the Alzheimerfonden for this article series. In part two of the series, BioStock will present the researcher’s point of view relative to AD in an interview with Niklas Marklund, professor of Neurosurgery at Lund University. He gives us his take on the progress made with AD research and what he believes are some of the biggest challenges within the field.