I am an academic physician in dementia, and this is a personal view.
Although I have voted Labour all of my adult life, I feel that the #DementiaTax cannot possibly be justified from any reasonable perspective of English dementia policy as it currently stands.
It is also highly objectionable under the international framework provided by the United Nations Convention on the Rights for Persons with Disabilities.
It is not a ‘party political point’ for me to criticise this policy which has colloquially become known as ‘the Dementia Tax’. I feel that it is my responsibility, conversely, to do so.
The origins of the term are uncertain, but it is possible that the term was first used by a caller to the “James O’Brien Show” on LBC. The term has been subsequently popularised in common parlance, and even on the front page of the Financial Times.
The ‘Dementia Tax’ is in effect a home equity release scheme. It is proposed that as a source of capital for some people facing large social care costs, you can be given a debt for which the equity on a property is a security. It would be up to you to repay that debt. It is proposed that the debt could even be paid back after you die. The scheme is extended to both domicilary and residential care.
It is not unreasonable to be concerned about people with dementia being in this situation. The costs of care, whether at home or in residential settings (for example, a nursing home or a care home), can be large, far in excess of an average income.
Over successive governments, of differing shades, the social care market has suffered from failure. It is impossible to discount market failure from failed private markets in policy.
There are about 900,000 people living with dementia in the UK. It is worth noting that many do live at home. It is worth noting that many are older and female. This scope for inequality and discrimination makes the operation of private markets in dementia especially perilous.
There is a large number of people who have substantial care needs. It is the current aspiration of policy to be able to enable people to live independent lives. National initiatives such as dementia friendly communities are confirmed by WHO and UN global policy of sustainable development goals.
A right to health is a fundamental human right in international law. The proposal from the Conservative government is potentially inequitable on putting unacceptable pressure on certain individuals who are unable to pay. It is, furthermore, a huge concern that carers will feel under pressure to offer the family home as a security in this home equity release scheme.
We already known that the care system for dementia only functions at all because of the monumental efforts of unpaid, family carers. These essential parts of the care system are pivotal in offering emotional and financial support. They are themselves highly vulnerable of becoming burnt out unless they themselves are looked after.
Caring is an intensely rewarding vocation for many carers, both paid and unpaid, spousal or children, or not. But the State, not the free market, arguably has responsibility in safeguarding them – this means protecting vulnerable adults.
This home equity proposal is possibly the most unfair way of arranging certain people pay for their care. It is worth remembering that it is very uncommon for someone to know in early adulthood that he or she will develop dementia later on. Also, we do need a solution to problems in dementia care fast, and also social care in general, and this home equity proposal turns the clock many years pre Dilnot and Barker (although their solutions were not perfect, but considerably better.)
Whilst recent policy has emphasised prevention and risk reduction in dementia, in keeping with the emphasis put by HMOs in the US in recent history similarly, it is worth noting definitive prevention of dementia does not exist. For example, lack of education while being a risk factor for dementia did not prevent two previous British Prime Ministers both who were highly educated developing dementia in later life.
The home equity release proposal is further dangerous in English dementia policy, for the mission creep it could provide for private insurance provision in dementia. Whilst a social insurance arrangement with the State would be very different, where we could all pool risk equitably and fairly, private insurance markets suffer in future from well-known issues such as “adverse selection” or “loss aversion” which means that they would ultimately fail for dementia, if there were not sufficient anti-discrimination safeguards in law for example for gender or genetics.
It is intuitively unfair for people who have paid off a mortgage for a property over their lives to see it consumed in care costs, rather than bequeathed as a final legacy, unless you fundamentally view that a purpose of dementia is financial punishment.
Dr Shibley Rahman
Dr Shibley Rahman is an academic physician in dementia based in London. His last book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach” was published to critical acclaim earlier this year, discussing important aspects of the integrated care pathway for dementia.