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It’s time we spoke about ‘the dementia tax’ a bit






None of us know for certain what medical problems we’ll have, when or how they’ll be manifest.

Even precise genomics won’t be able to give us the full answer one day.

We all know there is a problem somewhere.

There’s been relentless messaging like ‘grey tsunami’ and ‘dementia timebomb’, reinforcing the notion that the ‘aged population’ (and immigrants) are the root causes of all that is wrong with Britain.

You know when things are bad for the Conservatives when they have to resort to “Google ads” to divert your Google search for the phrase “dementia tax”.

I’ve resisted from commenting on the ‘dementia tax’ as I have voted Labour all of my adult life. This means that I have voted for Tony Blair’s national government three times, and I intend to vote for Jeremy Corbyn in about twenty days’ time.

There are about 900,000 people living with dementia currently in the UK. I am united with them, not united against them.

I am also an academic physician in dementia and frailty. Nonetheless, I am loath to get involved in participating in participating in a highly emotive debate.

The issue which has caused the furore is essentially to do with elderly care. The media have not really helped by their conflation of ‘elderly care’ and ‘social care’. For example, social care is not just about ‘old people’. And the policy proposal conflated with ‘dementia tax’ is not entirely helpful either as not all people living with dementia need hugely excessive care costs and indeed dementia can affect young people.

But onto the actual heart of the issue.

I was left feeling that this policy announcement was either one of immense incompetence or sheer cunning from Theresa May, parliamentary candidate, and her inner circle reported to include Ben Gummer and Nick Timothy. The only reason at all we’re “taking a second look” is because the Tories themselves, and substantial parts of the Tory media, have complained about it.

The starting point is that the divide between ‘health’ and ‘social care’ is an untenable one.

It cannot be morally acceptable that cancer and dementia are viewed differently – cancer as a health issue will not cripple you financially like dementia as a social care issue. Also, many conditions, considered ‘health conditions’ such as emphysema, might have a formidable social care component, say if accompanied by physical disability.

Also – dementia very rarely ‘travels alone’. A person with dementia with substantial care needs is likely also to be living with various medical co-morbidities.

It can hardly be expected that good policy will come out of a general election announced at shotgun notice. After all, we’ve had countless and commissions looking at the same thing, all producing imperfect conclusions.

This new proposed policy on elderly care, conversely, does not appear to have come out of any policy commission. But ‘seemed like a good idea’.

And this contribution is not only disappointing in itself, but also in that it was signposted as a massive new contribution, so much so there was nothing substantial in the Budget.

As a society, the social contract between us individually and the State is that we all pool risk together.

We as a society decide not to punish financially those who get unwell through no fault of their own.

I can see exactly why this new policy is going down like a plate of cold sick on the doorsteps. It goes against a generation of people encouraged by Maggie Thatcher to buy their own houses.

Now the equivalent value of the house that people have saved for will now be surrendered to pay for the event of huge care costs.

In a way, these Conservatives are being disingenuous in that they would prefer to be bailed out by the State against excessive social care costs rather than using their money in an entirely individualistic way.

This is the policy as stated in the Conservative manifesto 2017.

“Under the current system, care costs deplete an individual’s assets, including in some cases the family home, down to £23,250 or even less. These costs can be catastrophic for those with modest or medium wealth. One purpose of long-term saving is to cover needs in old age; those who can should rightly contribute to their care from savings and accumulated wealth, rather than expecting current and future taxpayers to carry the cost on their behalf. Moreover, many older people have built considerable property assets due to rising property prices. Reconciling these competing pressures fairly and in a sustainable way has challenged many governments of the past. We intend to tackle this with three connected measures.

First, we will align the future basis for means-testing for domiciliary care with that for residential care, so that people are looked after in the place that is best for them. This will mean that the value of the family home will be taken into account along with other assets and income, whether care is provided at home, or in a residential or nursing care home.

Second, to ensure this is fair, we will introduce a single capital floor, set at £100,000, more than four times the current means test threshold. This will ensure that, no matter how large the cost of care turns out to be, people will always retain at least £100,000 of their savings and assets, including value in the family home.

Third, we will extend the current freedom to defer payments for residential care to those receiving care at home, so no-one will have to sell their home in their lifetime to pay for care.”

In other words, the ‘family home’ is vulnerable, even if it is not during the course of your lifetime.

As an academic physician dealing with dementia, I have been struck with the difference between global policy from the United Nations and World Health Organization and the cheereladers of English charity on ‘dementia friendly communities’. In global policy, the notion of enhanced care at home or supported living, as part of the United Nations sustainable development goals, is actively embraced. However, the model of dementia friendly communities is predominantly one large charity in England endorsing their model of what a dementia friendly community is, with symbolic recognition of how dementia might bring Nudge-eque competitive advantage (e.g. dementia friendly leisure, shopping, banking, tourism), to the point that the relentless cuts in social care and NHS (unmatched for demand) have become an eyesore in the PR that ‘the UK will the best place to have dementia”.

There are only 8 years until David Cameron reveals his cure for dementia as part of the 2012 Prime Minister’s Dementia Challenge. But I expect Cameron’s cheerleaders ought to be and will be held to account even this means through the academic version of pitchforks.

The English dementia policy is entirely in keeping with a Small state ideology, with contraction in the promotion of clinical specialist nurses, a cure ‘round the corner’, and the annihilation of social care.

It is tragic that the social care profession has had its wings clipped, when it could be given the resources to enable and protect people diagnosed with dementia and care partners.

But the Prime Minister Dementia Challenge also failed in the way it did not adequately recognise dementia advocacy services. This is ironic, given the proliferation of an added tier of rent-seeking middle men involved in the vague concept of ‘dementia awareness’.

This advocacy was, and is, essential for advising for people who lose legal mental capacity. At a time when global and international policy is overall preferring people with dementia to make their decisions known at a time when they retain capacity, as opposed to a third party making the decisions for them, it is shocking that England is in such a parlous state with dementia advocacy. Dementia advocacy, from regulated professionals, was and is essential for people with dementia upholding their legal rights, especially when the State might be interpreted as overzealous in taking these rights away – see, for example, the deprivation of liberty safeguards.

I fully agree with the desire to close the ‘diagnosis gap’. For people with dementia to live better after diagnosis for longer, they should be diagnosed at the last minute.

In my experience, in answer to the question ‘what do you want ideally?’ to a person with dementia, I receive the answers ‘hope’ and ‘time’.

If dementia services had properly matured after 2012, with the same ‘accelerator’ fervour so rampant from Pharma, medical advocacy through colleagues in palliative care might see advance care planning to be seen as routine and acceptable, rather than odd ball and luxury.

Advocacy would also have protected the human rights and democratic citizenship of people with dementia. The attack on the human rights legislation is one thing, but at the moment “contained” in as much as Theresa May does not wish us to leave the European Convention on Human Rights.

But people with dementia, if/when they lose the ability to make decisions according to the Mental Capacity Act, need some degree of protection. Indeed, the Care Act (2014) contains useful statutory guidance on safeguarding.

Theresa May in her 2017 manifesto has introduced unfortunately another element requiring safeguarding. Her policy effectively is one of equity release, with delayed payment, until proven otherwise.

An example of current guidance, for example, on this is this:

“A deferred payment agreement is an agreement with us which could help you to use the value of your home to fund residential care costs. If you are eligible, subject to the council being able to obtain a first legal charge over the property, the county council will pay a sum agreed during your financial assessment towards your residential care home fees on your behalf. You can delay repaying the council until you choose to sell your home, or after your death. The amount you are assessed as having to pay for your care and support is delayed and not ‘written off’. The costs of your care and support will still have to be repaid by you or someone on your behalf at a later date either when you choose to sell your house or 90 days after your death.”

However, for the first time, this rule will now also apply to so-called domiciliary care – care at home – if the Tories win the election.

All of this is the end result of market failure from successive governments. There is no yearning for a private healthcare insurance market which is contracting rather than expanding.

This policy offering from the Conservatives is most dangerous because at first it had no upper cap. Now that, as of yesterday, there is a cap, but we don’t know what the cap might be even after questioning. And this cap is necessary to make sure there is some State intervention in excessive care costs.

Closing the ‘diagnosis gap’ is fine as long as people with dementia are given the proper care and support following diagnosis. It is clear that there is still much to be done, despite “Cameron’s cheerleaders”. To give you an example of how problematic English policy is at the moment, look at how the NHS Transformation Network “The well pathway for dementia” simply omits “caring well” from its structure.

With no upper cap, the State is in a position to repossess your house at some later stage if you need to pay for care costs.

The State will argue that it will guarantee you do not lose more than a modest sum in the process, but the devil is altogether in the detail.

Who for example is going to pay for the surveyors’ costs of your family home? Which lawyer, given the annihilation of legal aid following the Legal Aid and Sentencing of Offenders Act 2012, is going to help people with the legal paperwork which accompanies this?

The ideal of universal coverage is that we all put in and it’s luck of the draw what we pay out. Some people indeed hardly ever need to use the NHS or social care. But as a society we should worry, whatever political allegiance one is, about a policy which clearly acts to the detriment of a group of people because of their medical diagnosis, such as dementia?

But this is a policy which clearly benefits those involved in the private home equity release financial products, and where there are potential conflicts of interest from Government and “associated persons”, it would be helpful if these conflicts could be clearly identified if transparency is indeed the best disinfectant.

It happens that this is a policy which acts to the detriment of a protected characteristic under the Equality Act (2010), and is therefore potentially unlawful for indirect indiscrimination. The label “dementia tax” has somehow stuck, and is extremely effective during this general election period, but is not strictly speaking wholly accurate.

The Tory manifesto policy proposal does nothing to bring integration of health and social care closer (though this criticism by some was also made of the Dilnot recommendations). It also fundamentally does not address issues of quality of domiciliary care which could be affected by a number of disparate factors, such as implementation of the national living wage, lack of financial reimbursement for carers, ‘burnout’ of carers, abuse through zero hour contracts, poor financial sustainability of healthcare providers.

The Brexit induced by the Tory government 2015-7 has advantages and disadvantages as far as this policy is concerned. Firstly, if there were some delay in implementing this policy, the legislation might escape the EU gender directives (we know that more women on the whole are affected by dementia, so by escaping EU anti-discrimination law private insurance companies can ensure that women pay higher premiums to offset problems in paying out). Secondly, there might still be problems in getting enough people to be prepared to be paid carers if the UK stops free movement of workers.

The Tory manifesto proposal is sick as we don’t pool risk in the same way we do for the NHS, and yet the divide between health and social care is untenable. And definitely doesn’t address the problems so inherent in the lack of integration between health and social care, such as delayed transfers of care.

The sad thing is – I expect at the end of all this we won’t be much further forward. But at least some attention on social care, as opposed to the vast amount of attention normally given to the NHS, is welcome.



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