2 ★ FINANCIAL TIMES Wednesday 18 September 2019

FT HealthBusiness & Dementia

dementia by 2021, according to the

Alzheimer’s Society.

In addition, the Care Quality Commis-

sion found that a fifth of homes in Eng-

land failed to meet even minimum

standards last year.

Robert Kilgour, owner of Renaissance

Care, has noticed an increase in levels of

dependency.

“Residents with dementia are just as

likely to be up in the middle of the night

as during the day, so you need more staff

with greater experience at all hours,” he

says.

But finding workers — which account

for two-thirds of costs — is a perennial

problem in an industry relying on low

pay and zero-hours contracts.

Cuts in nurse training budgets, more

restrictive immigration policies and

increases to the minimum wage have

piled on extra pressure.

Alzheimer’s is a terminal condition

but it does not get the additional NHS

funding received by patients with ill-

nesses such as cancer — even though the

costs of a care home place for people

with dementia tend to be £200 to £300

a week higher than for those without.

Kathryn Smith, chief operating

officer at the Alzheimer’s Society, calls it

a “widespread injustice”.

“The policies are short-termist as

they mean more people are forced into

hospital, which is the more expensive

option,” she adds.

About a quarter of hospital beds are

taken by people with dementia — up 60

per cent over five years — even though

many are well enough to leave. This puts

the equivalent of 36 hospitals a day out

of action, says the Alzheimer’s Society.

Care homes cope with the extra costs

by charging up to 40 per cent higher fees

to self-funders, which subsidises state-

funded residents. This, however, puts an

unbearable burden on many families

that struggle to pay for care.

Despite the financial pressures, many

homes remain profitable, with a vast

gap between those that rely on lucrative

private-payers and those that depend

onlocal authority fees.

The 10 largest providers — including

HC-One, Four Seasons and Care UK —

hold a quarter of the market and benefit

from economies of scale, though they

are also debt laden — up to £40,000 per

bed, according to Opus Restructuring.

The finances of these offshore-owned

companies are opaque but HC-One has

paid out at least £48.5m in dividends in

the past two years despite arguing for

more funding from government

Nick Hood, analyst at Opus, adds that

“the scale of dividends extracted by

some owners and the unreasonably high

interest rates charged on loans by some

financiers are completely inappropriate

for what should always be a public and

not a commercial service.”

Meanwhile, many homes try to pro-

vide the best care they can. Back in

Bradford, Mr White says the virtual

train ride from Bradford to Blackpool

takes residents “away from the feel of

the home” even if just for a few hours.

“They know it’s a simulation and

we’ve replicated the experience but they

still enjoy it,” he says.

Continuedfrompage1

Nursing

homes seek

new routes for

elderly care

Contributors

Clive Cookson

Science editor

Gill Plimmer

Reporter

Lindsay Cook

Freelance journalist

Adam Green

Freelance journalist

Jeremy Hughes

CEO, Alzheimer’s Society

Ian Stuart

Chief executive, HSBC UK

Darren Dodd

Commissioning editor

Steven Bird

Designer

Esan Swan

Picture editor

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B

ritain is losing the skills of

thousands of valuable work-

ers because employers do not

know how to cope with early-

onset dementia.

About 40,000 people are affected by

the condition which includes memory

loss and difficulties with language, con-

centration or reasoning, according to

the Alzheimer’s Society.

Most people of working age who are

diagnosed leave their job soon after-

wards.

Four out of five depart within a year.

But supporting and redeploying these

workers can have a positive effect for

employer as well as employee.

Dr Anna Dixon, chief executive of the

Centre for Ageing Better, told the CBI in

May: “The most important thing you

can do for the future success of your

business is to focus on how you can ena-

ble people to continue to work for

longer.”

Becoming dementia-friendly helps

employers retain staff with advanced

skill sets and historical knowledge of the

company, says the Alzheimer’s Society.

“You will become an employer of

choice. Evidence suggests that people

look to work in organisations with poli-

cies and cultures that are inclusive and

empowering. Becoming a dementia-

friendly employer will demonstrate that

you understand and value the contribu-

tion made by all staff and attract the

best recruits.”

One striking experiment last year

showed what can be achieved.

Josh Eggleton, a Michelin-starred chef

who runs six restaurants, ran a pop-up

venue in Bristol largely staffed by 14

people with a dementia diagnosis for a

Channel 4 television series,The Restau-

rantThatMakesMistakes.

Over the five-week project, Mr Eggle-

ton was surprised by the hidden capa-

bilities of his workforce.

“A restaurant can be an intimidating

environment to work in, but we saw

self-esteem being boosted and confi-

dence shot through the roof. They

wanted to get up and go to work.”

Before the series began, Mr Eggleton

and his staff took a dementia awareness

course — a strategy he recommends to

other employers.

“You don’t treat someone with a

dementia diagnosis differently,” he

argues. “If you can help as a business,

you should. It helps to buddy someone

up so that, if they have difficulties, they

have a go-to person. You need to take

time to work with them, to listen to

them and understand what dementia

means to them.”

The Alzheimer’s Society has encour-

aged this by training a million employ-

ees across England, Wales and Northern

Ireland to be “Dementia Friends”.

Employers can only make reasonable

adjustments, however, if they are kept

informed by staff.

In a survey for the charity, more than

a third of people with dementia who

responded said that they did not tell

anyone at work about their condition.

Diagnosis often comes after months

or years of worry about difficulties at

work and at home.

During this time, the person living

with dementia may not have had help

and may feel they have to give up work

immediately because their employers

do not have processes to help retain or

retrain them.

But as awareness of the condition

increases, the risks to employers that

dismiss employees with young-onset

dementia also rise. There is no limit to

the compensation that can be claimed

under the Equality Act.

It applies to all employers and extends

to agency, casual, zero-hours workers,

and does not rely on the existence of a

written contract.

Emma Bould, a project manager in

the Alzheimer’s Society’s programme

partnerships team, says employees’

awareness of their rights is poor and is

surprised more cases have not been

taken to a tribunal.

“Many people really, really want to

work and to have that taken away is

huge. All employees should have a clear

pathway of support to ensure they are

supported at every stage of their jour-

ney,” she says. She adds: “Employers

have a duty to make reasonable adjust-

ments to support staff to continue work-

ing for as long as possible, as failing to do

so is against the law, as well as being

damaging to employers and the wider

economy.”

One in 10 businesses had employed

someone living with dementia, accord-

ing to a 2015 report from the University

of the West of Scotland. The average

person diagnosed with the illness while

still at work had been in their job for at

least nine years.

Ron Cullen, director of the UK Renal

Registry, a resource for kidney research,

says: “When considering your staff liv-

ing with dementia, it is vital to under-

stand what that means to the person

and to your organisation. The first thing

is to consider what the employee can

bring to your organisation, not what

they may have difficulty with, either

now or in the future.”

Hilary Doxford, aged 60, the Regis-

try's former head of business develop-

ment and support, worked in senior

management positions for 14 years.

She first noticed symptoms in 2000

but did not visit her GP until 2007. She

received a diagnosis of dementia in 2012

after returning to the doctors for the

third time.

She told her manager the following

day, as well as the staff that she managed

and the organisation’s trustees. This was

to ensure they were aware of any associ-

ated risks, as her role involved govern-

ance, HR and finance responsibilities.

Apart from stepping back from some

line management responsibilities, no

further amendments were made to Ms

Doxford’s role, and she did not leave the

organisation until 2017 following the

progression of her dementia.

The difficulty in diagnosing dementia

is one of the reasons that employees

may not get the correct support early in

their illness, says Dr Sabina Brennan,

the author of100DaystoaYoungerBrain.

“Many people with early symptoms

work longer hours because they are no

longer as productive,” Dr Brennan says.

“They may put the symptoms down to

stress or depression. This is likely to

exacerbate their symptoms because

they are exhausted.”

The Alzheimer’s Society suggests that

employers start by talking to the

employee to identify adjustments:

“Look together at their job description.

What can they still do, with or without

support? Are there safety-critical or

people management aspects that may

need to stop? If changes to working

hours, or their level of responsibility, are

being considered there may be financial

implications for the employee that

should be discussed.”

Why firing victims is bad for business

Employment

Business can

accommodate workers

with early signs of

dementia, writes

Lindsay Cook

Hidden capacity: two of the workers from the television series ‘The Restaurant That Makes Mistakes’

In the summer of 2014, I was diagnosed

by a neurologist as having young-onset

Alzheimer’s disease. I was a support and

recovery worker at the time and had

worked at the very same hospital that I

received my diagnosis for more than

two decades. Investigations at the

hospital had taken over three years to

reach a conclusion.

I was devastated beyond belief. As the

neurologist shows you all the findings

and brain scans, you experience such a

wide range of emotions that it is hard to

comprehend how your life will change.

Then I said to him: “They are all

waiting for me at work. I need to tell my

managers I have dementia, don’t I?” and

his response was simply “yes”. At that

time, I strongly believed it was stress, so

dementia was not a realistic diagnosis

for me. But everybody else had a strong

sense of what it was — they just needed

confirmation.

I had no time to reflect or process the

information as I made my way to

another room at the hospital to break

the life-altering news to the team.

While I was going to and from the

hospital for the investigations, I had a

special role made for me — my duties

were amended but it was still

meaningful and purposeful.

In the days and weeks after my

diagnosis, my manager tried hard to

keep me as I was less than two years

from retirement. But HR and people

above were the ones who eventually

pushed me out. People were making

decisions left right and centre for me,

not with me.

I just wanted my life back. I wanted to

come out of such a dark hole. I needed

time to think — to take it all in. I had

worked at the hospital for more than

two decades — they could, and should,

have given me more support and time to

have regular check-ups with my

manager and HR, and continue with my

amended duties.

One of the most horrible things was

when I was told I couldn’t have patient

contact unsupervised. I felt like I had

committed an offence, which was a real

slap in the face.

I am now retired due to my ill health.

This was not my decision, but one made

for me by my managers, occupational

health consultants and HR, who I think

acted in this way because there was a

lack of understanding about dementia

and they did not have the right

information to support me. All

businesses need to understand what to

do when an employee is affected by

dementia and Alzheimer’s Society is a

fantastic source of information.

I still have so much to offer and I work

closely with the Alzheimer’s Society to

help create a dementia-friendly nation,

where there is less of a stigma around

the condition, so that people like me can

live the lives we choose and have our

rights protected.

We did not choose to face a future

with dementia — it is the least we

deserve.

‘They did not have

right information

to support me’

Healthcare employee

Ahospital worker recalls

being forced out by an

unsympathetic environment

I will not try and make out that my after young-onset diagnosis

situation is comparable to a Disney film

or fairytale ending. But given how

daunting the prospect of a future with

dementia seems, I feel my situation as a

valued employee is as good at it gets.

I have been at HSBC UK for 35 years,

in various roles including area director

and government relations and am now

53. In 2015 I started experiencing

symptoms of forgetfulness and

confusion. At first I put it down to stress,

but in 2017 I was formally diagnosed

with Alzheimer’s disease.

There was no rule book that HR could

use to steer my future. But they did not

jump to false conclusions about the

impact of the disease on my abilities —

instead, we embarked on a journey and

learnt together.

What did we learn? Open dialogue is

vital. Instead of making assumptions,

employers need to ask “what can you

do?” and “what do you want us to do?”

Your relationship with your manager

is critical. There is a fine line between

your manager constantly checking up

on you and having a much-needed

safety net.

You also need the backing of

colleagues who will take the time to

listen, be open-minded, be able to

influence and take action to ensure

reasonable small adjustments are made

to allow you to be fulfilled and achieve in

your role. Hitting a constant ceiling will

just limit what you can offer and make

you more inclined to be secretive.

With all the above in place, soon after

my diagnosis, I was given the

opportunity to work with the team that

looks after HSBC UK’s partnership with

the Alzheimer’s Society.

This required some adaptations. As I

can’t differentiate voices on the phone,

enhanced technology for video

conferencing was installed and face-to-

‘They did not jump to false

conclusions about me’

Bank employee

Afterbeing diagnosed with

Alzheimer’s, Roy Lewis

worked with his employer to

redesign his working life

‘I felt like I’d committed an

offence — it was a real slap

in the face’

‘There is a fine line between

your manager constantly

checking up on you and

having a safety net’

Morethan a third of people

surveyed said they did not

tell anyone at work about

their dementia diagnosis

Two-fifths of us know a family

member or close friend living with

dementia, according to Alzheimer’s

Research UK. At HSBC , we serve

more than 14.5m people, which

means that 5.8m of our UK

customers have a loved one who is

living with the disease.

In 2016, we entered a three-year

partnership with Alzheimer’s

Society to become a dementia-

friendly organisation. We have

worked to improve the experience

of customers and colleagues and

ensure that everyone is embraced

rather than excluded, and

understood instead of forgotten.

More than 16,000 HSBC UK

colleagues have become

Alzheimer’s Society Dementia

Friends. The training educates

people about what it is like to live

with dementia and how to support

people with the condition.

Alzheimer’s Society this month

reaches the incredible milestone of

three million of these friends —

helping to change how society

talks, acts and speaks about the

UK’s biggest killer.

Ian Stuart

The writer is chief executive of

HSBC UK

What the

employer says

face meetings were encouraged. My

working hours were changed to reduce

fatigue and allow for hospital

appointments, and a car park space was

arranged for me.

What would I say to other employers?

How serious are you about investing in

the wellbeing of your staff? Dementia is

not going away, it is an increasing

problem that affects many valued long-

term employees.

That is why the work Alzheimer’s

Society does is so important — as well as

producing the Dementia Friendly

Business Guide, the charity has the

credibility and expertise to hold

businesses to account. If you do not

know how to begin helping employees,

the guide is a good place to start.

It is not a bed of roses — there are

challenges and change will always cause

disruption. But my employer focused on

what I am, rather than what I was — and

that enabled me to continue working.

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