Sally Greengross – 2021 Speech on Dementia

The speech made by Baroness Sally Greengross in the House of Lords on 16 November 2021.

My Lords, since 2015 dementia has been the leading cause of death in the UK, and there are currently 850,000 people who are living with the condition in this country. Of course, there are many different types of dementia, which all have very different symptoms and progress at different rates. We know that in the coming years the number of people living with some form of dementia is projected to increase significantly. This will place an even greater strain on our health and care system.

Research into dementia is critical. It may help prevent the occurrence of these conditions and will certainly allow people living with them a better quality of life. Dementia does not just affect those who have the condition; it also has a profound impact on family, carers and loved ones. Many of us in this Chamber will have experienced seeing someone we care about getting dementia and wanting to do anything we could to ease the suffering for them and those who support them. I declare my interest in the register as chief executive of the International Longevity Centre UK, which is currently working on a project analysing the impact of dementia on the high street and the retail sector. The growing number of people living with dementia will impact on the whole of society and have a significant economic impact as well.

In the 2019 general election, the Conservative Party made a commitment to bringing forward a dementia moonshot and

“doubling research funding into dementia”

over the next decade. Figures from the National Institute for Health Research show that this would increase government investment in dementia research from £83 million a year to £166 million, although I gather the Government’s figures differ from this. I am sure the Minister will respond on this point.

The Government have confirmed on many occasions that they intend to uphold the promise to double dementia research funding over the next decade. However, to date, they have announced no details of this. In early 2021, the All-Party Group on Dementia, which I co- chair with Debbie Abrahams MP, held an inquiry into the state of dementia research in the UK and investigated how this funding could best be used to support work in this field. The inquiry found that funding for dementia research was lower than that for other medical conditions; for example, funding was three times higher for cancer research than for dementia. However, the UK has to date been a world leader in dementia research, with only the United States spending more on research into these conditions.

The pandemic has taken a serious toll on dementia research, with many programmes having to be paused or even abandoned during 2020. One serious issue has been the reliance on charity funding, which in this country makes up 51% of dementia research funding. As we know, the economic conditions we now face due to the pandemic have considerably reduced charities’ ability to fundraise. The other factor has been the impact of Covid-19 on people already living with dementia. In the first 12 months of the pandemic, it is believed that 34,000 people who died of Covid-19 also had some form of dementia. One area that needs greater research is the impact of Covid-19 on those with dementia, as there is some evidence that the symptoms differed in Covid-19 patients who did not have dementia, and the Covid-19 mortality rate for those with dementia was considerably higher. Due to the need for social distancing to stop the spread of the disease, much of this or other ongoing dementia research could not take place.

There is evidence that there are at least 12 modifiable risks that can help reduce dementia. While research has shown that there are actions we can take individually and as a population to prevent some forms of dementia, very little is being done in the way of public education and awareness.

The other area of research that surveys show has strong public support is improving early detection. Some medications available on the market can slow the progress of some dementias, at least for a small amount of time, and early detection provides the best opportunity for these treatments to work. There is also some evidence that social prescribing, particularly exposure to art and music—particularly music, I think—can play a positive role in delaying the progress, or improving the quality of life, for those who have received an early diagnosis of dementia.

A few years ago, I had the privilege of going to an orchestral performance conducted by a gentleman who had had dementia for over 20 years. He had not been able to speak for many years, yet he often hummed tunes, and a group of music students were able to transcribe his music and perform it in a big concert hall. Seeing this man with dementia come alive, as he conducted the orchestra playing his music, was a very moving experience for me and taught me the importance of social prescribing. This is simply one area where we can learn so much more.

One of the concerning findings of this inquiry was the lack of evidence-based care approaches when supporting people with dementia. The Wellbeing and Health for People Living with Dementia project, funded by the National Institute for Health Research, starkly demonstrated this lack of evidence-based care. In a review of 170 training manuals for person-centred care in dementia, researchers found that only four provided evidence that methods had worked when tested in a research setting.

The all-party report made a number of important recommendations, including: that a priority for new dementia research funding should include investment in novel methods for early diagnosis, such as blood and other biomarkers; confirm appropriate funding for the UK Dementia Research Institute for at least the next 10 years; and build on the success of the multidisciplinary approach of the Alzheimer’s Society’s centres of excellence model and further expand this by introducing three new centres that will focus on some of the biggest challenges in dementia research. It also recommended that the Government should establish a specific fund of £40 million to support both clinical and pre-clinical postdoctoral research positions and talent retention in dementia research, and that the Government should develop a Longitude Prize for dementia, which would support the development of novel technologies. It also recommended that Join Dementia Research become an opt-out model and that data gaps in this programme should be addressed by integrating it with electronic patient records. Lastly, it recommended that the new Office for Health Promotion should launch public information campaigns which would explain how the public can take steps to reduce their dementia risk.

Finally, I acknowledge the Government’s recent announcement that they will spend £95 million on the delivery of their Life Sciences Vision and £2.3 billion to transform NHS diagnostic services. Can the Minister please clarify how this funding will benefit those people living with dementia and the dementia research community as a whole?