Dementia Action Week: let’s take action for dementia care and research

This week (17-23 May 2021) is Dementia Action Week. In recognition of the awareness event, Amy Beale, FRAME’s Education and Outreach Manager, describes her personal experience of having loved ones with dementia, looks at the limited progress made in research and treatment development and questions why animals continue to be used for research into this complex, human disease.

My maternal grandmother, Mary, or Nannie to me, suffered from early onset Alzheimer’s disease and spent most of my childhood living in nursing homes. I remember her in bed unable to speak, respond or eventually even recognise her family. If I concentrate, I can feel whisps of memories of her from my very early childhood when she lived at home with my grandad, but they may be based on old photographs and conversations. Her beloved husband John, my grandad, visited her for years before he too suffered from dementia and spent his final years in nursing homes when he could no longer live alone with support. I have many years of happy memories of him from before this time but still recall the sadness of seeing such a proud, active, caring man deteriorate and how his daughters tried to keep him living in his home for as long as possible. The term ‘dementia’ is used to describe a set of symptoms which can include memory loss, difficulties with problem-solving, confusion, mood and behaviour changes and difficulty with day-to-day tasks. Alzheimer’s is the most common cause of dementia followed by vascular dementia and dementia with Lewy bodies.

Dementia Action Week 2021

This week (17-23 May 2021) is Dementia Action Week. According to the Alzheimer’s Society, ‘nearly a million UK families are struggling to care for their loved ones with the dignity and support they deserve.’ COVID-19 has put extra strain on an already underfunded social care system. This year’s campaign calls for the government to commit to a clear, budgeted plan with milestones to reform the system and to ensure the reforms ‘consider not just funding, but also improving the quality of care that people receive.’

The charity has a petition that can be signed, and has written letters to the Prime Minister and First Ministers of Wales and Northern Ireland which can be found here.

Dementia research: a lack of progress

Understandably, due to the history of dementia in my family, I am interested in any headlines regarding research or the treatment of dementia and Alzheimer’s disease. I was genuinely shocked at the amount of research and drug development that has been carried out and the corresponding lack of progress in treatments to slow the disease.

In 2020, a five-year review was published by Dr Jeffrey Cummings at the University of Nevada looking into information collected annually on the pipeline of clinical trials and drug development for Alzheimer’s during this time period.  In 2014 – the first year of the pipeline analysis – Dr Cummings and his team quantified a 99% failure rate of all therapies in development. He acknowledged that during this five-year period there had been no successful drugs developed for treating the disease. At the time the paper was published, there were 121 unique therapies being tested in 136 clinical trials. These clinical trials can last around 18 months to two years and cost drugs companies between $30 and $50 million per trial.

An earlier review published in 2018 looking at published Alzheimer’s research suggests that there have been no successful treatments discovered in the previous 15 years despite a 30% increase in related publications (over 40,000) between 2008 and 2012.

“Insanity is doing the same thing over and over again and expecting different results.”

The sheer amount of money that is being spent on drugs development – with little progress -cannot be ignored, particularly when we are still unsure of the mechanisms causing the disease. On top of this, the cost of caring for and treating those with dementia is high, and the cost of quality care even more so. The cost of dementia to the UK currently is £34.7 billion a year and set to rise. In the UK today, 850,000 people suffer from dementia and this is expected to increase to one million by 2025, and two million by 2051.

Human-relevant research

As well as having a responsibility to safeguard the health and welfare of those suffering from dementia, we also have a duty to assess the value of the funding being spent on research into the disease and the usefulness of he outcomes. Here at FRAME, we question why findings about Alzheimer’s disease and potential drugs from preclinical trials and other animal research are not translating into human trials. Today, scientists are still using mice to investigate this complex, human disease that is influenced by a number of different genetic and environmental factors.

We believe it is time for a rethink on how we approach research into dementia and Alzheimer’s. We need to use the research tools that are best placed to help us learn about the disease and understand how it affects the human brain. If these tools don’t yet exist, we should be channelling funding into their development.

Visit the Alzheimer’s Society website for more information about dementia and to find out how those with dementia or caring for someone with dementia can access support.