Towards the end of his life, my grandfather would eat the flowers in the vase on our kitchen table or put the bananas away in the shoe cupboard. It was painful to see such a proud and active man suffering so cruelly from a combination of Parkinson's disease and dementia, and to watch the speed of his deterioration from being fit enough to cycle long distances in his late 60s to being in a wheelchair by his mid-70s.
He was of a generation that couldn't do anything about the onset of dementia, but was probably one of the last not to know whether this crippling disease would affect them or not. One in 20 people over 65 have dementia and one in five of those aged over 80. The nature of the disease means they are unable to lobby for access to care, or start a revolution and change healthcare systems. Instead, overworked families and carers have to fight on their behalf.
That is all changing. Very soon, today's 40 to 50 year olds will be able to discover more easily whether they are susceptible to the disease. New technologies will soon be able to facilitate early diagnosis and be able to distinguish Alzheimer's from forgetfulness. These are the next generation of tests developed from the commonly used paper-based Addenbrooke's Cognitive Examination (ACE-III). These tests provide a wider access to cognitive testing and a greater ability to make an earlier diagnosis of decline in cognitive function.
This is the generation that has been referred to as the 'Digital Natives', so-called by clinician Eric Topol because they have grown up in front of a computer screen. The emergence of this new patient group, that is technologically aware and highly demanding, will have a profound impact on healthcare. This new group will not be content with limited access to the technology that can help them manage their condition and with minimal spend on R&D. Whether through large scale twitter campaigns, Facebook pages or new forms of digital lobbying, this group is going to demand access to better treatment options.
Recent medical history has shown that access to the latest technology and medicines is often driven more by patients and loved ones than by companies, clinicians or researchers. In his book, 'The Emperor of all Maladies', the Clinician Dr Siddhartha Mukherjee shows how patients and an active public pushed healthcare systems and government policy towards tackling cancer head on, making it the big C.
This started in 1948 when the Jimmy Fund changed the perception of cancer in the US as pioneers like Mary Lasker and Dr. Sidney Farber led a campaign for better cancer care for children with leukaemia. Their passion facilitated a whole patient movement. Years later, the role for patient empowerment took a different form when women with breast cancer began to knock on the door of US biotech companies demanding access to better existing treatments. The end result of these campaigns was that women with HER2 positive breast cancer were given, for the first time, access to the life-saving drug, herceptin.
There was a similar change in the treatment of patients with HIV in the 1980s, in the US. This was another campaign inspired by patients, their friends, families and a few celebrities. Together they changed the nation's perception of the disease, leading to more research funding and eventually better access to new interventions. Again, this movement enabled countless patients to gain access to drugs that they would have otherwise never had the chance to use.
Today's Digital Natives, aware of their potential Alzheimer's risk, will have a similar impact on new treatments. Of course, at the moment we have no drugs that cure or limit the disease. The drugs prescribed, mainly Aricept (produced by Pfizer), relieve the symptoms rather than change its progression, although new evidence suggests it may slow down the progression. However, digitally enabled campaigns led by the new generation of patients and carers are likely to keep the pressure on researchers, companies and governments to increase investment and focus on looking for a cure.
This is, however, unlikely to be available in the next few years so early diagnosis is critical. This would help identify those patients that might benefit from new drugs and this is important as the research suggests the next generation of medicines will need to be administered much earlier to stand a chance of working. It will also help patients plan for the future and how they might manage their disease.
We know that technology can offer some help for patients with dementia to manage their lives. The Design Council recently ran a competition to identify technologies that can support independent living with dementia. The winners included a machine that releases smells of food that stimulate people to eat. One of the dangers of severe dementia is that people living alone forget to eat, but by triggering the sense of hunger with food smells, patients will realise they are hungry and prepare lunch.
The challenge is that few of these assistive technologies, let alone new diagnostic tests, are routinely available. However, if past history is a guide to patient revolutions, it will not be long before the next generation of older people will be demanding more from the health service and giving further impetus to progress in tackling this dreadful disease.
Dr Hakim Yadi is a healthcare expert at PA Consulting Group
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