As of 2013, there were an estimated 44.4 million people with dementia worldwide.
This number will increase to an estimated 75.6 million in 2030, and 135.5 million in 2050. There are currently 800,000 people with dementia in the UK. There are over 17,000 younger people with dementia in the UK. There are over 25,000 people with dementia from black and minority ethnic groups in the UK. It is thought that there will be over a million people with dementia by 2021.
People are living longer. While this is good news, an ageing population also presents a number of serious challenges for the health and social care system. Both the proportion and absolute numbers of older people are expected to grow markedly in the coming decades. The greatest growth is expected in the number of people aged 85 or older – the most intensive users of health and social care.
It’s likely that we will be able to test for genetic risk factors for the dementias with much greater certainty in the decades ahead, due to advances in technology. This will be, most likely, a particularly powerful tool in those families where dementia appears to affect a number of generations.
Alzheimer’s disease is the most common form of dementia and, of all the main types of dementia, the genetics of Alzheimer’s is the best understood.
We can currently, perhaps, consider the disease to have two forms: the rare early onset Alzheimer’s disease, where first symptoms appear before the age of 65; and the much more common late onset Alzheimer’s disease, where typically the first symptoms develop after this age. These two types of Alzheimer’s disease generally have different patterns of genetic inheritance.
Vascular dementia is the second most common form of dementia. There are no established direct genetic causes for the more common forms of vascular dementia, but researchers are looking for risk genes for the disease. The most recent findings suggest that APOE ε4 is a risk factor for vascular dementia, but with weaker effects than for Alzheimer’s disease. There are also known genes that contribute to some of the underlying risk factors for vascular dementia, such as high cholesterol levels, high blood pressure and diabetes.
Frontotemporal dementia (FTD) often runs in families: about one third of people with it have a family history. In 10–15 per cent of all people, FTD is inherited as a mutation in a single gene, most notably in the genes for the proteins tau and progranulin.
The architects of the NHS recognised that equity in health care could only be achieved by sharing the risks and costs of care across the whole of society from rich to poor and from healthy to sick. It is well established that poverty and ill health are closely associated. Risk sharing means that those with the highest needs must not be penalised for being both sick and poor.
It was for this reason the architects of the NHS embedded solidarity and collective provision into the structures for the funding and delivery of care. The Health and Social Care Act (2012), on the other hand, put some competition jet engines on the NHS so that it could be easily worked up as a privatised market.
In the April 2002 budget, the then Chancellor Gordon Brown had reaffirmed the UK commitment to central taxation as being the most progressive and efficient way of risk pooling in the NHS. It allowed those with the greatest health and wealth to share the benefits of their good fortune with those who are not so fortunate. Importantly, it removes the stigma of charity by making health care an entitlement to which we all contribute.
But there has a growing lobby in support of funding alternatives.
The Adam Smith Institute have in the past proposed a switch to insurance funding and along with the private sector have lobbied for private insurance. The argument is that alternatives would leave more resources for those with greatest need within the NHS or would increase efficiency. But the consequence of the alternatives is market-oriented health care – decreased access, reduced quality and increased cost.
In contrast to universal public services, which consolidate and strengthen the risk pool through integration, markets work by dividing the population into winners and losers. Genetic make-up can in the future be used to determine who the likely winners and losers might be, when it comes to the risk of developing a dementia.
Of course, dementias are governed by an interplay of genetic and environmental factors, so it’s not altogether clear-cut. But as research develops, these answers might become a lot clearer.
Profit is maximised where providers can pick the winners and reject the losers. In health this means selecting the profitable patients and the profitable services.
A possible alternative, if you’re not going to entertain the free at the point of need system, embraces ‘co-payments’ or ‘top-up payments’. In a survey reported by the Patients’ Association as “NHS Co-Payments: How popular are they among healthcare users?”, 1018 people replied.
Clear support for the principle of free at the point of use with 89.9% saying that they thought the principle of an NHS free at the point of use was a good one. However, support for the principle of ‘ free at the point of use’ falls to 69% when respondents are asked to take into consideration economic factors when considering the issue of co-payments.
Even in ‘whole person care’, if NHS and social care budgets get merged, it may not be so obvious how much the State is actually providing, particularly if the system allows the provision of ‘co-payments’. So, if the ‘universal, free at the point of need’ principle gets eroded by the introduction of co-payments, even if no political party is ultimately brave enough to go for private insurance provision, it could still be costly for an individual who develops a dementia.
To coin a phrase by Harold Macmillan, you may never have had it so good.