4 ★ FINANCIAL TIMES Wednesday 18 September 2019

FTHealthBusiness&Dementia

You would think it was enough to have

dementia enshrined as a disability in

legislation. You would have reason to

believe that the UK Equality Act 2010

and the UN’s Convention of the Rights of

Persons with Disabilities had the clout

to sufficiently protect people affected by

the disease.

Yet thousands of people living with, or

caring for someone with dementia, are

losing out on the protection that the law

is supposed to provide.

They face discrimination in the

workplace and when searching for

employment, feel unable to assert their

rights to be treated fairly. They are also

often excluded from programmes

designed to create employment

opportunities.

The result is far too many people no

longer being able to work, both prior to

and directly following a diagnosis.

Carers also often feel they have no

choice but to leave work themselves or

cut down their working hours to care for

a loved one.

It’s easy to feel like we’re wading

through treacle in attempts to treat

dementia as what it is — a disability —

and support people properly.

The stigma that surrounds dementia

is suffocating businesses across the UK

and society is lagging behind in its

understanding.

All too often I hear moving testimony

like that of a former university lecturer

now unable to get a job collecting

trolleys or a senior IT consultant who

has been out of work for two years,

leaving him unable to pay off his

mortgage.

Rarely are the words “dementia” and

“rights” put together. People with

dementia are not at the fore in human

rights debates in the same way as other

marginalised and at-risk groups.

Legislation is not supposed to apply

only to disabilities you can see. But there

is a big difference between the

experiences of people with dementia at

work and those affected by other

conditions.

I am immensely proud of the work

we’ve done to lead the dementia-

friendly movement. Of the 3m people

who have become Alzheimer’s Society

Dementia Friends, around one million

have done so through their workplace.

It’s the biggest social action movement

changing the way people think, act and

talk about dementia.

My colleagues have travelled to

businesses from countryside to coast to

deliver more than 400 training sessions

in the past year alone and are working

hard to get every employer to become

dementia-friendly, from supermarkets

and banks to pharmacies and

restaurants, factories and farms.

We are working with individual

industries, as in our Insurance United

Against Dementia initiative, led by

dedicated board members from the

sector.

We have also produced material such

as our Dementia-Friendly Business

Guide to bring about cultural change

and provide practical solutions.

Becoming a dementia-friendly

employer is not going to put a strain on

the balance sheet or distract from

driving profits and sales.

People with dementia and their carers

are themselves a significant group of

potential customers. It does not take a

lot to create an environment where

people understand dementia, those

affected feel able to seek help and where

organisations have the right policies in

place to support the needs of those

affected.

Our mission will hit a ceiling unless

two things happen.

The first is that more employers must

be held to account to make sure

reasonable adjustments are made.

What kind of society are we living in

where a disclosure of dementia leads to

losing your job?

The second is that government must

bring legislation and guidance up to

date. Current advice fails to even

reference dementia, an oversight that is

leaving affected people and their carers

exposed to greater levels of

discrimination.

Reforms on access to employment

rights need to be made a priority,

including updating government

guidelines on the responsibilities of

employers to support people with

dementia, as well as a reviewing the

Access to Work scheme.

There also needs to be a fresh call for

the UN convention to be incorporated

into UK law.

With ever-increasing numbers of

older people in employment and people

with dementia set to reach one million

by 2021 and two million by 2051,

businesses need to improvetheir

understanding and awareness of the

disease and prioritise support for

employees.

Many people are diagnosed with

dementia when they are at their most

experienced in their working life. To

throw out their skills, knowledge and

abilities without considering how much

they still have to offer is ignorant,

lacking compassion and wasteful.

We all have a duty to help people

affected by dementia feel included in

their community, be treated equally and

feel accepted, so that they can live better

lives.

I urge every business, big and small, to

unite with us and the government to

ensure their proper legal protection.

The writer is chief executive of Alzheimer’s

Society

Government and business

must be held to account

OPINION

Jeremy

Hughes

Whatkindofsocietyarewe

livinginwhereadisclosure

ofdementiameanslosing

yourjob?

Jeremy Hughes

A

string of negative trial

results has prompted talk

of dementia as an R&D

“disaster zone”, but the

pharmaceutical industry

and academic scientists say the lessons

learnt are providing new targets in the

fight against the disease.

“Alzheimer’s is the number one cause

of mortality for which we have not a

single drug that can change the course,”

says Dr Mark Mintun, vice-president of

pain and neurodegeneration R&D at Eli

Lilly.

Disappointment has followed a wave

of optimism that drugs which attack

amyloid beta, the sticky proteins that

clump together to cause plaques in the

brain, could bring a cure because of

strong evidence linking them to

dementia. “The field was excited but

multiple trials based on this hypothesis

have been futile,” says Dr Mintun.

In January 2018, Lilly announced that

its Solanezumab drug did not

significantly affect cognitive decline and

it later halted trials for another drug,

Lanabecestat. It is not alone. In March

2019, Biogen halted two trials of

amyloid-focused drugs, knocking $18bn

from its market valuation.

Researchers now believe that, by the

time a patient is experiencing

symptoms like memory loss, amyloid is

the wrong target.

“Once it has triggered downstream

effects, including mechanisms like

neuroinflammation, it’s too late to turn

off,” argues Dr James Pickett, head of

research at the Alzheimer’s Society. He

likens amyloid to the “match that lit the

bonfire”. Deposits accrue in the brain for

years, probably decades, before

symptoms emerge.

Tau is another protein which forms

tangles in the brain that inhibit

communication between neurons. Its

dynamics more closely mirror the

progression of Alzheimer’s disease than

amyloid, and researchers are now better

able to target it, says Dr Mintun.

Other promising developments are

also challenging the gloomy narrative.

In August, a team at Washington

University announced an Alzheimer’s

blood test with 88 per cent accuracy.

Blood-based diagnosis would ease trial

logistics which rely on expensive and

invasive procedures like PET scans and

lumbar punctures.

This could encourage the industry to

spend more. “The volume of studies in

dementia is a pittance of what’s going on

in areas like cancer, so every study is

under the spotlight,” says Dr Pickett.

As well as lowering the chance of

finding a cure, the minuscule number of

trials in turn fuels the narrative of R&D

despair. “There are more trials failing in

cancer than Alzheimer’s at the moment.

There are also more that are succeeding,

because it’s a 30-fold greater number of

trials,” he says. “Merck is running more

studies of a single cancer

immunotherapy drug than are taking

place in the entire field of Alzheimer’s”.

Other promising pathways include

gene therapy, especially for people

carrying mutations that make

Alzheimer’s inevitable, sometimes as

early as their forties or fifties. The UK

Dementia Research Institute said last

month it was developing the technology

and would begin testing therapies in

frontotemporal dementia.

Repurposing of drugs like metformin,

a diabetes therapy, has also shown

promise, although the pharma industry

has little incentive to invest and is

unlikely to commit spending on

off-patent drugs. New sources of

philanthropic capital and longer-term

speculative investment are also needed,

given the industry’s lack of appetite.

Here are a few examples of the new

approaches:

3 The Bill & Melinda Gates Foundation,

historicallyfocused on infectious

diseases, has increased spending on

dementia since 2017.

3 The Dementia Discovery Fund, based

inLondon,is pursuing a venture capital

approach, investing in start-ups in areas

like immuno-neurology, energy

metabolism, and even the microbiome,

based on evidence linking the gut to the

immune system.

3 Merger and acquisitions are

integratingpromising start-ups with

larger companies. “Once companies

have validated targets and promising

drug leads, Big Pharma is coming in with

financing and rolling some of those into

clinical phases,” says Dr Pickett.

3 Stem cell research in universities is

enablingscientiststo make “mini-

brains”, or organoids. “We can make

different brain cells and genetically

modify them to correct or introduce a

mutation,” says Julia Fitzgerald at the

University of Tübingen. This can help

build a better picture of how dementia

evolves.

“Universities and researchers have to

move closer to drug companies,” says

Ms Fitzgerald. “There was all this

money in the pharmaceutical industry

but not enough connection with

researchers, and researchers have been

frustrated because they have the ideas

but struggle for funding”.

Lilly’s Dr Mintun is encouraged: “It is

hard to find an example of such a major

disease in which pharmaceutical

companies and academic scientists

collaborate more than we do in

Alzheimer’s”.

Research roundtables, such as those

organised by the Alzheimer’s

Association, have created a “place

where we can talk in a pre-competitive

way and ask: ‘Are there things we’re

missing in the science? Are there ideas

that haven’t had enough hearing? Are

there new diagnostic techniques that

could affect the way we do trials?’”

Disappointing trials involving BACE

inhibitors, which impede the enzymes

that led to the creation of amyloid,

started to fit together once companies

shared their findings.

“Companies had clinical data that

individually they might struggle to

make sense of, but when they shared

this, we could quickly understand what

it meant and make sure we rapidly

gained understanding”. He challenges

the popular narrative that pits large

pharma companies against each other

in a race to discover a blockbuster cure.

“This is genuinely an area where, if any

company announced good results, we

would all be happy,” he says.

Failed trials spark new approaches and ideas

Pharmaceuticals

Researchersare

exploringnewideason

whatcausesthedisease,

writesAdamGreen

Professor Paul Whiting at work

in London’s Dementia Research

Institute

Charlie Bibby/FT

‘Thevolumeofstudiesin

dementiaisapittanceof

what’sgoingoninareas

likecancer’