This month, two new reports/ briefings into the state of dementia and research have been released. We saw the first release last week by the World Health Organisation. In their new factsheet, the WHO now estimates the global number of people living with dementia to have hit 55 million. 55 million, just to repeat that and let that sink in. That is 55 million people currently living with dementia.
Dementia does not only affect those living with the condition though. Many millions more are affected by caring for someone with dementia. In fact, as outlined in their factsheet, the vast majority of those informal or family carers are women – they provide 70% of unpaid care. This is a huge gender inequality, which is also seen in the proportion of dementia-related deaths – 65% of which are in women.
Considering that 60% of people with dementia live in low- and middle-income countries (LMICs), where dementia care is often even patchier than in high-income countries, many people with dementia are likely facing enormous barriers to receiving the right care at the right time. In some cultures or countries, there can be a general lack of awareness or stigma associated with the condition, so that people are less likely to seek help in the first place. Even when people are not seeking help for the dementia, families can provide a great deal of care for someone. It is estimated that dementia care, paid and unpaid, health and social care, costs 1.3 trillion US dollars globally, each year.
If some of those numbers make you pause for a little while and reflect, then you are not alone. Luckily, in the UK, the All-Party Parliamentary Group on Dementia has been thinking the same, and launched a report this week showcasing the impact of the pandemic on dementia research, the state of dementia care and needs for future research, and importantly, making a very strong evidence-based case to the Government to release the promised Moonshot funding for dementia research. The Report is called #FuellingtheMoonshot.
There are a number of recommendations in the report, including targeted investment into methods for early detection of dementia and the UK Dementia Research Institute, the creation of three new Alzheimer’s Society’s Centres of Excellence, a specific fund for clinical and pre-clinical postdocs, and to support and maximise the success of Join Dementia Research.
That is all good, but have you noticed something, fellow non-clinical dementia researchers? Whilst there is a section on care in the report, this is merged with ‘technology’. Considering that there are 920,000 people living with dementia in the UK, and many more unpaid carers, it seems inappropriate to neglect a focus on dementia care and dementia care research in those recommendations. There is no cure. Hopefully one day, we will find one. But until then, we need to support those people living with the condition, and those caring for or having cared for someone with the condition, to live well and independently. How are we supposed to achieve that when the social care system is not functioning well (and still leaves some room for improvement beyond April 2022), and there is not enough focus in an important report such as this by the All-Party Parliamentary Group on Dementia?
I do hope that dementia care, and research, will receive the attention and support it deserves, and overall, both the WHO fact sheet and the APPG report paint a picture of some, not all, of the needs for dementia.
Ed Comment: Dementia Researcher was also mentioned in the report as a service which should receive funding support.
Dr Clarissa Giebel is a Research Fellow at the University of Liverpool and NIHR ARC North West Coast. Clarissa has been working in dementia care research for over 10 years focusing her research on helping people with dementia to live at home independently and well for longer, addressing inequalities that people with dementia and carers can face. Outside of her day work, Clarissa has also organised a local dementia network – the Liverpool Dementia & Ageing Research Forum, and has recently started her own podcast called the Ageing Scientist.
How much I agree that there should be more focus on research on living with dementia. For all the search for a curative breakthrough my concerns are how to organise my day to day life with early stage Alzheimer’s: and there seems to be little evidence based support, or support rooted in detailed knowledge of my condition. Hours of neuro psychological tests just seem to go by the wayside, rather than be used to tailor make solutions for me and my particular brand of disease. I call for research to be much more rooted in the lives and experience of people living with dementia, whose concerns may well differ from those that some suppose them to be.
You’re ahead of the curve, but increasingly precision / personalised medicine is being discussed in dementia and neurodegenerative diseases – many think this is the way, and that a combination of different drugs / treatments will probably be the key. There is actually a webinar in precision medicine coming up soon – https://alz-org.zoom.us/webinar/register/WN_cnEy8Ye0TAOOJC4t9gocRA