World Alzheimer’s Day: latest research and a carer’s perspective

On World Alzheimer’s Day pharmaphorum looks at statistics, current research and the impact of dementia on families.

As the world’s population ages, dementia and its most common form, Alzheimer’s disease, has become one of the biggest global health problems.

Worldwide, there are estimated to be more than 46 million people with dementia today, and this is expected to rise to over 130 million by 2050.

In the UK, dementia is the leading cause of death among women, with over 13% of deaths per year attributed to it directly. There are 850,000 people living with dementia in the UK today – a figure set to reach over one million by 2025 and over two million by 2050.

Dementia is an umbrella term for the symptoms caused by a range of diseases, including memory loss, confusion and personality change. Alzheimer’s disease is the most common cause, along with vascular dementia, dementia with Lewy bodies and frontotemporal dementia.

Though there are no treatments to affect the course of the underlying diseases, focus has been placed on disease-modifying treatments, in line with the G7 commitment to develop such treatments by 2025.

There are now 12 potential therapies in late-stage testing for Alzheimer’s disease, mostly aimed at slowing disease progression in early-stage disease.

However, the charity Alzheimer’s Research UK reports that dementia research only receives around 3% of the UK government’s medical research budget.

Dementia Consortium

The Dementia Consortium is a global collaboration between academia, charity and the private sector, launched at the end of 2013 by the UK government to boost early-stage drug discovery for dementia. It has awarded over £1.5 million, to date, to projects including one targeting the immune system in a bid to halt nerve cell damage in Alzheimer’s and another studying targeting TDP-43 aggregation in frontotemporal dementia and amyotrophic lateral sclerosis.

The last new drug for Alzheimer’s was launched more than a decade ago  – since then many compounds have failed in clinical trials, the condition proving stubbornly resistant to several different approaches. However there is hope that some small but significant breakthroughs are around the corner. Biogen has seen positive results with aducanumab, which has been shown to remove plaques from the brains of patients with early-stage Alzheimer’s disease. Now Biogen and its development partner Neurimmune are following up with phase 3 trials of aducanumab at more than 300 study sites across 20 countries.

The Alzheimer’s Society’s head of research, Dr James Pickett, commented: “No existing treatments for Alzheimer’s directly interfere with the disease process, and so a drug that actually slows the progress of the disease by clearing amyloid would be a significant step.”

However, he cautioned that, while the drug might have an effect on the symptoms of the disease, the further, larger research trials will be needed to show whether this is the case. And these won’t be completed until 2020.

Sea Hero Quest

One of the main issues hindering dementia research is a lack of volunteers for trials. To remedy this situation, Alzheimer’s Research UK worked with Deutsche Teleko and scientists from University College London and the University of East Anglia to develop a smartphone game, called Sea Hero Quest. This free app is designed for the general public to play and will help the scientists understand in detail how human brains navigate space, and help to build the largest crowd-sourced database on human spatial navigation. Alzheimer’s Research UK explains that “people with dementia can face real challenges with navigation, and it’s a problem that can occur early on in the condition. However, we still don’t have reliable data on how navigational abilities can change in the healthy brain across life. Playing the game for just a few minutes will provide this completely anonymous data to help improve our understanding of navigational cognition. We’ll create a benchmark to help determine what goes wrong in the brain for people with dementia.” To date over 2 million people have downloaded the game.

Caregiver’s experience

Here the wife of an Alzheimer’s patient in the US relates her experiences in an online diary excerpt.

It is raining and cold again. Last winter, I didn’t mind the cold so much. But, this winter was worse and it makes it harder when you have a sick loved one. It makes getting out of the house nearly impossible. Not to mention the financial strain of the rising cost of trying to warm one’s home.  I never had that problem living in Florida and since last winter was not as tough…I have to say I was not expecting that additional cost … Now, I am looking forward to getting outside. I know I won’t be able to do as much as last summer since my hubby’s health has deteriorated. But, my dad is coming to plow up my garden and I can get started on that.

Sad news. The gentleman that lives in my area with the same disease as my husband passed away this past weekend. I am sorry for his family, but his suffering is now over and they can get their lives back. When I say that, it sounds a little selfish. But, when you are dealing with this type of disease, it is harder on the caregiver and other family members. The patient is indifferent to almost everything. They don’t seem to experience any pain. There’s no stress, no worries. They just have no empathy. There is a total lack of caring about their surroundings and what is happening to them and their families. They simply live for that very moment that they are in is the best way to put it in perspective.

My husband has always been a very caring and compassionate man and I know he would give up his life for me if need be. He would get all bent out of shape if I even had a headache. Now, if I were laying on the floor in front of him bleeding to death, he would simply step over me and go to bed. Not his fault. But, that part of the brain that controls those emotions is destroyed at the very beginning of this disease. That is the tell-tale sign of the first symptoms. But, the caregivers and family put their entire lives on hold and cease to live outside of caregiving. And while you still want that person to be here and to be ok, you also want to be able to live and not just watch everyone else live. But, so is life. We do what we have to, make the necessary sacrifices and cherish every second because you know it is going to end sooner than you ever thought imaginable. It is hard to cherish every moment when this person is nothing like the one you met, married, had three children with and declared to grow old with. It is hard to make new memories when there is no emotion involved on his part, but, we do the best we can…”

About the authors:

Linda Banks is Commissioning Editor at pharmaphorum.

The carer experience is a genuine diary entry shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Treatment Diaries connects people to those who can relate and provide support.

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