Alzheimer’s disease: A condition to remember

As someone in their early forties, I’m now starting to think about how life winds down – including care for my elderly relatives and, eventually, myself. Wales is a first world country, so it’s inevitable that we are now living longer. But it seems that health in later life still hasn’t been fully researched or prepared for, nor support for the independence we seek in our twilight years.

And the largest risk factor for dementia is ageing.

Since devolution, Wales has been provided with excellent research which tells us that our population is ageing and how old it will be by 2050. We’re even made aware that, globally, the number of people living with dementia is forecast to triple by 2050 and, in Wales, the number of older people living with dementia is projected to increase by 70%.

We’re also told, every year, that dementia is one of the leading causes of death in Wales and the UK, but it seems we are still catching up on care for this pernicious disease, as well as its prevention and eventual cure.

Health and social care services and Governments, despite being provided with this information, just aren’t prepared for the co-morbidities older people face, including dementia, or the plain fact that they will need more specific care which, inevitably, will be more expensive for the taxpayer.

New drugs to treat types of dementia, but…

There are exciting developments in dementia research, with two new antibody drugs – donanemab and lecanemab – being considered by UK health regulators after stunning clinical results showed slowing of cognitive decline in Alzheimer’s patients by 35% and 27% respectively. However, Alzheimer’s charities are already pointing out that both early diagnosis and preventing an NHS postcode lottery are going to be key to their success in the UK.

Looking first to early diagnosis, at current rates, nearly 20% of those with dementia symptoms in Wales are waiting more than six months even before they seek help, according to Alzheimer’s Society Cymru. Alzheimer’s Society further estimated that 53% of people who responded to one of their surveys weren’t sure if their memory loss was dementia or part of getting old and 1 in 3 further said that they didn’t want people to think they were “losing their mind”. Therefore, public awareness, open conversations and building confidence for those with symptoms are going to be hugely important factors for these drugs to work.

Worryingly, workforce issues are also a major barrier to early diagnosis. A 2022 Alzheimer’s Society and Royal College of Psychiatrists survey into memory assessment services in Wales, England and Northern Ireland found that 71% of respondents identified workforce challenges as a barrier to accessing timely diagnosis, and 90% agreed or strongly agreed that staff vacancies decreased the likelihood of patients accessing a timely diagnosis. Sadly, first language Welsh speakers have been noted to experience further delays to access to support.

So, it’s not surprising that less than half of respondents (47%) from memory assessment services in Wales, England and Northern Ireland were ‘often’ or ‘always’ diagnosing patients in the early stages of dementia.

A further obstacle to early diagnosis is lengthy waiting times. Waiting for brain scans was identified as a difficulty for nearly 1 in 4 respondents to Alzheimer’s Society’s survey across Wales, England and Northern Ireland.

All of these barriers to diagnosis would preclude a number of patients from accessing these life-changing drugs, given their effectiveness is based on using them at an early stage of Alzheimer’s. To address this in part, the Welsh Government’s Dementia Action Plan 2018 to 2022 - which works to improve diagnosis, care, and support for people with dementia - was underpinned by a £9 million investment, with a further £3 million recurring investment for early diagnosis in particular. However, we are waiting for both its replacement and an independent review’s findings on how successful (or unsuccessful) it has been.

Is the NHS fully prepared?

Shockingly, the Chief Executive of Alzheimer’s Research UK and Co-Chair of the UK Government’s National Mission on Dementia, Hilary Evans, also suggests that, even if the drugs are licensed within 12 to 18 months, they will only be available in “small pockets of the UK” and huge changes are needed for treatments to be readily available on the NHS in five to ten years’ time.

Instead, according to Dr Evans, hospitals with the research infrastructure and equipment are more likely to be able to deliver ground-breaking treatments. And for those who don’t live nearby, it’s likely to be a choice between paying privately or doing without.

This means that, potentially, Alzheimer’s patients who live in more rural areas in Wales, or those living in areas covered by community hospitals, won’t be able to access the same level of treatment as, for example, those who live in Cardiff or Swansea.

Wales’ position in dementia research

A slice of the UK Government’s pledge of £160m in dementia research funding next year would be beneficial to Wales – including, potentially, examining how its hospitals can lead the way in applying new dementia treatments in the UK. There are currently over 140 dementia treatments in trials, which means that Wales’ universities have the opportunity to capitalise on dementia research and accelerate these breakthroughs.

Astonishingly, Alzheimer’s Research UK estimates that, if the extra money announced by the UK Government is applied, for every £1 invested, it would generate four times the amount in economic impact. Yet, Wales spends just a quarter on R&D for dementia per head as the South East of England – just £252 per head compared with £1,106. Therefore, investment in both researching the disease and treatments, as well as bringing forward Welsh citizens for clinical trials will be beneficial for our position in the global fight against dementia.

Where Wales can lead the way in new treatments

As we wait for the results of the review on the Welsh Government’s Dementia Action Plan, there are more urgent arrangements the Welsh Government can and should be undertaking, which will help cement its position in adopting innovative treatments. These could be managed even before UK health regulators approve both drugs.

First, we need to know how early diagnosis is being tackled in Wales. The Welsh Government has so far failed to produce public data on diagnosis, so researchers are left to rely on their own estimations on how many have been waiting for diagnosis and treatment.

Evidence submitted to the Health and Social Care Committee in 2022 was anecdotal, with Alzheimer’s Society Cymru stating it had estimated that 4,000 people were waiting for memory assessment services in late 2021. Additionally, it had calculated that the diagnosis rate for dementia had dropped to about 50% during the COVID-19 pandemic, adding 2,000 people to the roughly 50,000 people who are living with dementia in Wales.

The Welsh Government’s response was to note that, while it’s in favour of public data collection, it can achieve the same outcomes through strengthening its links with the academic world. Furthermore, the Deputy Minister for Mental Health assured the Senedd in May that she had provided NHS providers with the guidance necessary for recording individual types of dementia, and publication of a snapshot review on memory assessment services was on the way.

But this seems like a little bit of a sop to the issue from the Welsh Government.

Whatever the outcome of both reviews, the Welsh Government should be pushing for comprehensive data to help NHS providers, researchers, the third sector and policy makers to identify and unblock any issues experienced within Local Health Boards – and in Welsh communities – on diagnosis and treatment.

Second, Wales’ New Treatment Fund, in place since 2017, is well-placed to quickly apply medicines which have been approved by NICE and the All-Wales Medicines Strategy Group. Currently allowing new treatments to be offered routinely within 60 days of their earliest recommendation, this could be an excellent vehicle to enable more patients with Alzheimer’s disease to access this life-changing drug.

In fact, a joint NHS Confederation/Association of the British Pharmaceutical Industry (ABPI) report published this year showed that there was a much higher uptake of NICE-approved medicines in Wales than in every other region in England.

So, it may just be a question of whether the £16 million made available for these treatments every year is enough to fully roll out innovative Alzheimer’s drugs in Wales. The extra money needed should be at the forefront of Ministers’ minds when making budgetary decisions in the coming years. How this will fit in with competing priorities, given the First Minister’s recent request for Ministers to find cuts in public services, remains to be seen.  

Finally, the NHS Confederation/ABPI report also noted the danger of varying geographical and sub-population usage of innovative treatments, in part, due to both unconscious bias towards groups receiving treatment, as well the culture and behaviours of some patients and communities towards new treatments.

However, it recommends that Governments across the UK publish clear national policy statements on how improved access to innovative treatments can improve health outcomes, reduce health inequalities and variation in standards of both health and care, tackle backlogs and contribute to economic growth – to the tune of £17.9 billion in the UK.   

Adopting such a policy statement and using new Alzheimer’s research as a galvanising factor to do so, could mean Wales leads the way in successfully rolling out life-changing treatments across all areas. 

 

Notes

 

 

Nichols, E. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019  2022 7(2): E105:

https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00249-8/fulltext

 

Wittenberg et al. (2019) Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019-2040  London School of Economics and Political Science, Care Policy and Evaluation Centre:

https://www.alzheimers.org.uk/sites/default/files/2019-11/cpec_report_november_2019.pdf   

 

The Guardian Experts urge health regulators to approve ‘turning point’ dementia drugs 17 July 2023:

https://www.theguardian.com/society/2023/jul/17/experts-urge-health-regulators-approve-dementia-drugs-donanemab-lecanemab

 

ITV Wales Almost 1 in 5 people with dementia symptoms waiting six months before seeking help 15 May 2023:

https://www.itv.com/news/wales/2023-05-15/i-couldnt-see-a-life-after-my-dementia-diagnosis-i-was-in-a-very-dark-place

 

Alzheimer’s Society improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland 9 May 2023:

https://www.alzheimers.org.uk/sites/default/files/2023-05/alzheimers-society-improving-access-timely-accurate-diagnosis-england-wales-full-report.pdf

 

Miranda Bryant New dementia drugs: patients to pay privately or face NHS postcode lottery 16 July 2023 (The Observer):

https://www.theguardian.com/society/2023/jul/16/new-dementia-drugs-patients-to-pay-privately-or-face-nhs-postcode-lottery

 

Alzheimer’s Research UK The Economic Value of Dementia Research July 2023:

https://www.alzheimersresearchuk.org/wp-content/uploads/2023/07/Economic-Value-of-Dementia-Research-July-2023.pdf 

 

NHS Confederation/ABPI Transforming lives, improving health outcomes: tackling the true cost of variation in uptake of innovative medicine 17 January 2023:

https://www.nhsconfed.org/publications/transforming-lives-improving-outcomes 

 

BBC News, Welsh public services must make cuts, Mark Drakeford says, 10 August 2023:

https://www.bbc.co.uk/news/uk-wales-politics-66438471