My Lords, I shall speak to Amendment 62 in my name and those of the noble Baronesses, Lady Hollins and Lady Walmsley, and the noble Lord, Lord Jones of Cheltenham. I thank them, and the Alzheimer’s Society and Alzheimer’s Research UK, for their support of this amendment.
People with dementia will be one of the largest groups of people to see the benefits of the integration of health and social care services and, therefore, the benefits from the Bill. Currently, there are 900,000 people living with dementia in the UK and, without a disease-modifying treatment available after diagnosis through the NHS, they get the majority of their support through the social care system.
This amendment relates to Clause 21, which ensures that integrated care partnerships prepare an integrated care strategy. These new strategies will be a powerful way to bring together various currently disparate bodies to work towards the same aims. Topics discussed within these strategies will be given consideration across the health and social care systems, consideration that too often people living with dementia have lacked, leaving them falling through the cracks between the various systems. This amendment therefore suggests that each strategy should explicitly consider the needs of people living with dementia. There are two areas where integration could provide particular benefits, which I will touch on briefly.
The first is diagnosis. A diagnosis is incredibly important for people living with dementia, as it allows them to plan for the future, arranging their housing and care needs, putting themselves forward for clinical trials and ensuring that they have first access to the most innovative treatments, while also unlocking access
to vital extra support in the short term. This does not just help the individual. By providing the right support at the right time, we can reduce pressure on the NHS. That is why NHS England rightly has a target that two-thirds of all people living with dementia will have received a diagnosis. This was consistently met from 2015 until the pandemic. As people visited their GPs less frequently, clinicians were diverted to other areas and individuals had little access to memory clinics. The rate dramatically fell from 67.6% in January 2020 to just 61% in January 2022. This has meant that, according to NHS data, an extra 35,000 people are now living in the dark about their dementia status. As we address the backlogs in elective treatment and cancer care, it is vital that we also tackle the backlog in diagnosis of dementia. To do so, we must have clear strategies in place, at local and national level.
I am proud that the UK is seen as a world leader in dementia research, as many noble Lords know very well. However, there are still barriers to us reaching our potential, including a lack of participants for research. This is not because there is low interest in participating in research among the public. According to Alzheimer’s Research UK, 69% of the public would be willing to take part in dementia research. However, 81% did not know how to volunteer. The NHS, as a single health system, has many advantages which give it great potential for data sharing between research and clinical practice, connecting those who want to take part in studies with those conducting the studies.
A valuable report recently released by the All-Party Dementia Group, Fuelling the Moonshot, recommended that all newly diagnosed patients receive a letter from the NHS within three months of diagnosis, explaining how they can take part in dementia research. Integrating dementia research with integrated care partnerships will provide other benefits. The benefits should, and would, flow in both directions. While research can benefit from better access to participants, it should also ensure that innovation, whether in treatments or models of care, can reach people living with dementia.
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With no treatments available, we cannot ignore the vital role of encouraging dementia prevention and ensuring that individuals look after their brain health. In discussing the possible causes of dementia, obesity raises its ugly head once again. Researchers at University College Hospital studied a group of participants from the English Longitudinal Study of Ageing. Each participant was at least 50 years old when they were enrolled in the study. Their measurements, including BMI and waist circumference, were collected, and the participants were studied on average 11 years later to determine whether they had developed dementia. The researchers found that participants who had a BMI corresponding with overweight or obese were more likely to develop dementia. Obesity has also been found as a risk factor in several previous studies.
Research has also shown that the number of dementia cases worldwide could potentially be reduced by a staggering 40% if the 12 modifiable risk factors for the condition could be completely eliminated. The Lancet identified that the three modifiable risk factors with the largest potential impact were hearing loss, low
education in early life and smoking. Not everyone who smokes will get dementia, but stopping smoking is thought to reduce the risk down to the level of non-smokers. While there is no sure-fire way of preventing dementia, advances in dementia research have shown that there are steps that we can all take to keep our brains healthy and reduce our risk of developing dementia. The dementia research sector can continue to build on this work with the right support from various sources. However, efforts to improve both dementia research participation and diagnosis rates will amount to little without action taken at national level as well.
The Department of Health and Social Care is currently preparing its updated national dementia strategy, which has been much delayed by the pandemic. At its heart, it must have two main focuses, much like local strategies: diagnosis rates and dementia research. On boosting research, it would be remiss of me not to mention the need to deliver urgently on the promise of the 2019 Conservative manifesto to provide a “dementia moonshot”; that is, a doubling of government funding provided to dementia research. If we are to improve the lives of people living with dementia, we need not only determination from local and national government but strategies for how to deliver these ambitions. Whether it is delivered through this amendment or through other means such as the strategy, dementia care should get the co-ordinated planning that it deserves.