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2. In short
• People with dementia like
shopping
• They don’t do it as much as they
want. There are lots of barriers
to consumption
• There is an economic as well as
a social cost of failing to adapt
our high street
• We need to innovate; adapt
policy and just be kinder
3. We have listened to the problems and tried
to design solutions
Identifying the issues:
• 44 interviews: People living with dementia
and their carers & people from customer-
facing retail professions
• Two focus groups with professionals in the
field of diversity and inclusion,
• Analysis of the English Longitudinal Study of
Ageing (ELSA)
Designing solutions:
• Roundtable to refine the
challenges
• An innovation forum to design
solutions
• An idea refinement session to
test the solutions
4. We have listened to the problems and tried
to design solutions
Designing solutions:
• Roundtable to refine the challenges
• An innovation forum to design solutions
• An idea refinement session to test the solutions
5. More of us will have dementia
• One in every three people in the UK aged 80 and over lives with dementia.
• 900,000 people are living with dementia and other cognitive
impairments.
• That number is set to almost double to 1.6 million people by 2040.
• Around two-thirds of people with dementia continue to live in the
community
6. Government is (was) interested
David Cameron set up the Prime Minister’s Challenge on Dementia to address
‘one of the biggest global health and care challenges – a challenge as big as
those posed by cancer, heart disease and HIV/AIDS’.
The second Challenge in 2015 proposed that by 2020, England would be:
• The best country in the world for dementia care and support, for carers and
those diagnosed alike
• The best place in the world to undertake research into dementia and other
neurodegenerative diseases
7. But there is a gap between rhetoric and
reality
• The main investments have been in bio-medical research.
• The Conservative manifesto promise of a ‘Dementia Moonshot’ to double
spending on dementia over 10 years to £800 million hasn’t been reflected in
budgets.
• The Prime Minister’s Challenge envisaged the creation of 3 million Dementia
Friends to engage businesses – but there is limited measure of uptake
• The proposed central online point for dementia information for business has
not been created.
• We are still waiting for a new 5 year dementia strategy
8. Do we safeguard or let people make
mistakes?
There’s a balance to be struck between enabling people with dementia to
continue to spend their money as they see fit (including in ways that may appear
unwise to others), and protecting people who no longer have mental capacity.
“I know from experience that [my father] continuing to engage with the world as
much as he could, and doing things, rather than giving up meant that he did live
well... I mean he died with a smile on his face in his own home, which is what he
wanted… I know that was due to a large part of him trying to keep engaged with
the world…” (Focus group participant – cared for her father who had dementia)
9. People like shopping. But they stop and
spend less than they could
• Shopping is among people with dementia’s favourite activities – it’s shown to
help improve their health and wellbeing.
• 1 in 4 people with dementia give up shopping post-diagnosis and around
63% believe shops aren’t doing enough to help them.
• In England, individuals aged 50 and over living with dementia spend much
less than those who don’t. Cognitive impairment is strongly related to lower
spending.
10. If we addressed the problems, there could
be a boost to GDP
Consumer spending could see a boost of £948 million each year if our
spending environments were more welcoming to people living with dementia
and other cognitive impairments.
Those who report their mental abilities as “poor” spend 58.2% less on leisure,
51.4% less on non-essentials and 38.7% less in total than those who feel that
they have excellent mental abilities.
11. If we addressed the problems, there could
be a boost to GDP
Monthly spending by dementia status
12. We identified lots of barriers to
consumption
Getting out and about “…after fairly early on, she didn't use public transport by
herself.”
Buy what we want and need “She had the intention of buying something… like
cat food – and probably walked out with everything other than what she
needed”
Feeling misunderstood or disrespected “I don't think he wanted ever wanted
any drama and attention – during any slip-ups. Other people's reactions were
more of an issue than his own.”
13. We identified lots of barriers to
consumption
Feeling anxious about navigating retail and leisure environments “Walking
around with the shop can be quite daunting.”
Low confidence in accessing and managing financial services “I haven’t found
banks or utility companies that supportive…”
Challenges paying for goods and services “My mum would struggle if she was
asked too many questions at the till.”
14. People find it difficult to get out and about
No longer being able to drive; Lack of confidence in accessing public
transport; Problems with getting lost or disorientated while travelling on
public transport, or actively by bike or on foot
“I have become less confident going up because just before the diagnosis, I
was tripping up a lot. And I'm just I'm just a bit edgy going out on my own.
And if I fell over and I've had a couple of falls outside out of the house. You
know, I'm just a bit bothered that I would fall...” (Interview participant living
with dementia)
15. People struggle with public transport
Understanding the timetables: “Trying to understand bus timetables… [it’s] too
much information – information overload – it is really overwhelming and
difficult for people with dementia to understand…” (Interview participant,
former carer at a retirement home).
Buying tickets: “Going to buy a ticket in advance, you know, they're asking you
all sorts of questions… do you want to travel going forwards or backwards? Do
you want to sit with a table? Panic! All these things affect you with dementia?
Whereas before, if I think back, it wouldn't been anything - I would have flown
through all that no problem at all” (Interview participant with dementia and
living alone).
16. People struggle with public transport
Complex journeys: “I’ve started to go and I meet my other daughter in York as
well. So when I go there it terrifies me, especially if I’ve got to change trains,
that’s horrible.” (Interview participant with dementia and living alone).
Confusing spaces: again... they missed his flight… if you do get separated, it is
such a busy complex environment, and sheer volume of people… it can be
really difficult to reunite people.”
(Focus group participant, DEI manager at an airport)
17. Companies are trying to help
• Most train operating companies offer:
• assisted travel for people with cognitive disabilities;
• the option to book a member of staff to accompany passengers with
dementia on train journeys; and
• support for those travelling with a carer.
• Airport operators have put more support in place for people with dementia
• Arriva Rail Northern and the Alzheimer’s society created a dementia friendly
railway route on the Bentham line between Leeds and Morecambe.
18. But awareness of the offer is low
“…it’s very likely that some customers are not aware of that support
and therefore don’t feel safe enough to take the train… it's a
common challenge for customers with many disabilities, because
either they've heard horror stories, and therefore they don't want to
travel because they think it will happen to them, or they've been on
one journey, and they've had one bad experience.” (Focus group
participant, DAI Manager for a rail operator).
19. Shopping in person isn’t always easy
• Difficulty making informed choices;
• Finding things;
• Buying things they don’t need
“Some customers forget why they’ve come in and what they need… they try
and describe what they need – but [don’t] always makes sense…” Interview
participant - front line shop professional)
20. People forget to pay (and worry about
forgetting)
“… often, people will use self-service checkout, they'll tap their card, assume
that that's gone through and paid, and then they walk out, it's called a walk
off.” (Interview participant, policy manager at a chain of small retail stores)
“…the alarms went off – and mum got in a horrible state at the thought of
shop-lifting… it was traumatising…” (Interview participant, carer for parent)
21. People forget to pay (and worry about
forgetting)
A little bit of help: “I once noticed a customer with dementia was shoplifting, I
wanted to help her... I said ‘let’s get hold of your family… so they can help you’
and I got in contact with her family. Then she came back with a suitcase with
stuff… rather than go down the police route… when you know [a customer], you
can follow them around the shop, and keep them distracted, and be aware of
what to look for.” (Interview participant, front line shop professional for a large
retail store)
The ‘Mission Dementia’ initiative (Austria) aims to provide the police with a
working tool for solving complex situations that involve an individual with
dementia, by changing the way police approach different situations.
22. People feel anxious navigating retail and
leisure environments
Having trouble finding what they need; Understanding busy environments with
lots of stimulus, or feeling stress because of them
“…Walking around with the shop can be quite daunting. Aisles always look the
same, you know, up and down, up and down and people with dementia
struggle with spatial awareness.”
(Interview participant, former carer).
Lords Cricket Ground offers customers with dementia a visitor pack that
contains information on meeting points, store tickets and a map of the ground,
with toilets clearly located. Getting disorientated or lost;
23. Staff don’t always know what to do
Undermining independence: “Staff can very much think… you're supposed to
be helping do it for them. But that's not actually what we're there for. They
don't understand that. It's actually better for a person with dementia do it
themselves… we’re there to support their independence rather than take over…
(interview participant, former carer)
Addressing carers: “[We need to] make sure you don’t just ignore them and go
straight to the carer… obviously you’re on minimum wage, so you can’t just
stop and spend 10 minutes with them… but at least acknowledge that they’re
there…”
(Interview participant, frontline staff member at a pub)
24. The public can be unhelpful too
“Other customers can be very rude … they will say ‘tut tut,’ or say ‘hurry up’ or
swear at customers that do need a bit more time…sometimes it can be when
someone is paying, They can take a bit more time… or you are helping people
around the shop… the general public can be a bit unforgiving…”
(Interview participant, front-line staff member at a large retail pharmacy).
25. The public can be unhelpful too
Struggling with etiquette: “I'd say the activities would be… where you'd have to have a
certain decorum and conduct oneself in a particular fashion. And mummy, in the early
days, didn't appreciate the etiquette. That filtering process in her stage of her
dementia at that time… we'd be there at a concert, and she'd be talking or want to get
up… just as if she was just sitting in front of the television… [so] we didn't go to as
many of those events as we used to. ….And that impact was not going to certain
places and doing certain activities.” (Interview participant, carer for parent).
26. Identifying customers with dementia is a
barrier to support
Hidden disabilities: “I suppose the issue is …they're not wearing a badge that says,
‘dementia sufferer’… and that tends to be a problem….” (Focus group participant, DAI
manager at a retail pharmacy)
Denial: “If we say to people, are you vulnerable? They say [no], regardless of where
they are or they’re not” (Interview participant, manager at an insurance provider)
When people with dementia aren’t identified it can lead to issues. “Vulnerable
customers may be more likely to get on the wrong train: previously there was an issue
where staff might confuse a vulnerable customer with someone cheating the system –
but now they’re given training, this is generally ok.” (Focus group participant, DEI
Manager for a rail company)
27. Zero abuse policies can increase agitation
“We have a zero tolerance [policy] on abuse to staff… but, while we try to
ensure the team… can differentiate between someone who is abusive and
someone who can’t help what they are doing as we don’t want to make things
worse by raising the alarm, mistakes can be made which can make a
vulnerable customer anxious… We can accidentally make a situation worse by
pressing the panic button when their aggressive behaviour stems from anxiety
and they just want to be helped…” (Interview participant, manager for a
pharmacy retailer)
28. People are trying to help
The hidden disabilities ‘sunflower lanyard’ scheme is designed to allow individuals to
discreetly indicate that they may require additional assistance, without having to ask
or explain themselves. Alzheimer’s Society also provides free personalisable
‘Helpcards’ that a person living with dementia can carry around with them.
A little bit of help “…we always went to the same [wine shop] they all knew him – so
he had no problem dealing with shop staff. He knew them no problems.” (Interview
participant, carer for partner)
“I want to know that staff can recognise that buying 10 boxes of tea bags might not be
normal”.
(Focus group participant, store manager of a small shop)
29. Some shops are trying to help
Sainsbury’s and Tesco piloted ‘slow shopping’ sessions in 2015 – a scheme to help
customers enjoy a more relaxed shopping experience.
Santander has worked with the Alzheimer’s Society to become dementia friendly.
Initiatives include training staff, creating more dementia-friendly products, making
branches more dementia-friendly, and improving internal policies..
Easier for smaller shops? “…it’s easier to support vulnerable customers as they know
them in local stores, say, outside London…it’s easier to know how to support the
customer in smaller places… [as there’s a] greater opportunity to know them in the
community…” (Focus group participant, DAI Manager for a high street pharmacy)
30. And they are training staff
1. Pharmacies have generally offered Dementia Friends training to all
pharmacy staff since 2019, incentivised by the NHS. However, incentives
have stopped more recently, and training isn’t refreshed or offered regularly,
nor is it incorporated into everyday training.
2. Rail companies and airports generally offer training on supporting
vulnerable consumers, informed by the relevant regulatory bodies (the
Office of Rail and Road and the CAA).
31. And they are training staff
3. Most large financial organisations offer training on assisting vulnerable
customers. Many have also offered staff one-off Dementia Friends training.
4. Most retail and hospitality organisations offer no formal training, as they are
generally small organisations. The Association of Convenience Stores
encourages retailers to support vulnerable customers, including those with
dementia.
32. Design is important
Toilets, supermarkets and theatre seating options “…my dad would sometimes have
an urgent need to use the loo - on arrival to the shops. So clear signage of where the
toilets are when you enter the supermarket could be really helpful” (Interview
participant, former carer for parent)
In retail and leisure environments: e.g. Confusing floor patterns; Overhead signs in
shops difficult to see; Inconsistent use of colour; Low lighting levels; Changes in
layouts; Lack of visible resting places; noisy environments; no toilets; inconsistent
signage.
Online: Websites may be busy; designs may not have enough colour contrast or have
too much text to take in or use confusing background sound.
33. Dementia friendly design is important
The Dementia Action Alliance (DAA) has established a checklist for public
spaces and building.
More formal assessments of a buildings dementia-friendly design have been
carried out by the University of Stirling’s ‘Dementia Services Development
Centre’ (DSDC). And the Centre has recently launched its Environments for
Ageing and Dementia Design Assessment Tool (EADDAT)
The Great Sankey Neighbourhood Hub in Warrington was the world’s first
public building to be certified ‘gold’ by the DSDC’s auditing process
34. Sometimes its simple adaptations
The Alzheimer’s Society published a guide for cinemas, providing tips on how
they can put on dementia friendly screenings. .
The independent Castle Cinema in Hackney offers bi-monthly dementia
friendly screenings, selling tickets at a reduced rate with carers going free.
The ‘Dementia Space’ is a pop-up at the Grainger Market that is funded by a
partnership between Newcastle City Council and local organisations. The
space offers a relaxed area that people with dementia can access while out
and about shopping to sit down or have a coffee. it also offers information and
advice, learning sessions,
35. Moving online - Shopping on the net works
for many
Those who shopped online said that they found it relatively easy. “I've been
doing a lot of online shopping with eBay and Amazon… it's quite easy to go
along and do all of that. Then suddenly, you find out that you've overdrawn the
account.” (Interview participant with dementia)
But many of our participants with dementia said that they didn’t shop online
due to: Lack of confidence; Unfamiliar apps and electronic devices; Difficulty
reading; Design issues; An excess of choice making the shopping experience
confusing.
36. But it can be hard to identify people who need
help – and not many safeguards
Is it harder online for companies to identify someone needing help online ? “A lot of
people purchasing policies do so online, so it’s very, very hard to check capacity:
while over the phone, you can hear if someone’s not understanding, but online, you
just can’t do that.” (Interview participant, manager at an insurance company)
Some carers told us they sought to safeguard loved ones by changing their
passwords, but restricting people’s freedom could cause conflict and agitation.
37. “Sitting ducks” to financial abuse
“You know, we found something recently: the direct debit, we don't know what it
was for. But … payments [have] been going out every month for about six months,
for nearly 40 pounds. And when we told the bank, they found that it was going to a
bank in Kenya, that apparently collect lottery subscriptions” (Interview participant,
carer for partner).
I won’t bank online I don’t trust it – because many people get their account
hacked… don’t want to come into a situation where I lose all my money…”
(Interview participant with dementia, without a carer)
38. There are huge issues with financial
services
It’s difficult to understand the offer
• technical jargon;
• untrained customer facing staff;
• comparing quotes and making decisions;
• avoiding unnecessary products;;
• Attraction to risky behaviour that can result in unwise investments
People find ways to make things easier e.g. setting up direct debits for utility
bills (but direct debits can leading to overspending)
39. We have too much choice
Too much choice: “He's got all these insurance policies coming out of his ears, you
know, paying left, right and centre ... He’s got two policies, with two utility companies,
both for the same thing…” – (Interview participant, carer for parent and utility
company employee).
“People change their television, and their broadband and everything…. I can't do that. I
just thought I'm paying too much. But it's just beyond, you know, changing it. It's just
too difficult.” (Interview participant with dementia)
40. Proving identity and accepting support can
create problems
Passwords are a problem: “She couldn't remember her PIN or password - and
because she hadn’t put in place power of attorney it was pretty hard to get
somebody else to access the account… it was such a big battle” (Interview
participant, former care worker in residential setting)
There can be a reluctance to accept support or admit vulnerability: “A lady that
I've been dealing with – who has dementia - she's in financial difficulty … But
when you ask at the start of the call… she was like, ‘No, everything's fine.
Everything's fine.’ And you go into the call and we drill down… that's when she
told us that she was in financial difficulty.” (Interview participant, carer for
parent and utility company employee)
41. Online banking doesn’t work for all
“They were not comfortable with online banking because it was an interface
that neither parent could get used to or felt confident with. I think… they'd
heard all this stuff about people being ripped off, so I think they were just
angry…” (Interview participant, carer for parents)
“I use contactless, but I won’t bank online I don’t trust it – because many
people get their account hacked… don’t want to come into a situation where I
lose all my money…” (Interview participant with dementia and living alone)
42. People don’t know about the support
“…I haven’t found banks or utility companies that supportive… it's through sort-
of peer support that I’ve found out about the different things that you can apply
to, in terms of reductions for the utility bills, your gas, electricity and TV license.
Before that, no-one's really like forthcoming with information, and it can be so
so like, dead hard.”
(Interview participant, carer for parent)
43. Trust isn’t great
Trust is a big issue for the financial services industry: “Companies, what they're
after is your money aren’t they? They're not there to help you.... And what
would be helpful would be if, I think, that morally they had an obligation to
customers who are vulnerable, to provide them with the best deal... It would be
very good if I had somebody who could go through those options to find the
cheapest one for me”
(Interview participant living with dementia)
44. Responsibility falls on carers – but they
aren’t always able to help
“…it's an area that I dislike anyway, I particularly hate numbers, I find them
quite difficult to navigate – that’s why my wife managed the finances… it's just
yet another aspect of the household that I have to manage. And my natural
tendency is to [say] I'll just put that bill on the side there.” (Interview
participant, carer for partner)
The Money Carer Foundation is a daily money management and deputyship
service, which provides clients with enhanced money management support
that’s independent and free from conflict of interest.
45. Bank closures are making things more
difficult
“My mum can’t look after her finances… there aren’t as many banks on the
high street as they used to be… internet banking is easy… but not for people
who have dementia.” (Interview participant, carer for parent)
“Unfortunately my local bank branch has moved from being … 10 minutes'
walk away. It's now a bus ride away. So, if I want to draw any money out from
the machine, I've got to go get a bus and go for it. I couldn't walk the distance.”
(Interview participant with dementia)
46. An LPA is the “single best thing” to protect
people with dementia
“It was all positive, because we were able to manage my family's finances
without any restriction. And it meant we were able to continue her lifestyle
fairly seamlessly. So keeping up with her capacity, keeping up with how she
would expect life to be in her own home, bills being paid, the shopping being
done, and coming with us during the shop. And we constantly wanted to keep
her involved - to keep her included. So if we were able to do that without any
obstacles, it made it much more seamless.” (Interview participant, carer for
parent)
“I don't think people properly understand the implications of not having a
lasting power of attorney when they have financial products.”
(Interview participant, manager for an investment company)
47. But we identified lots of issues
• Length of time to register an LPA;
• Cost;
• Information;
• Auditing process;
• Attorneys can’t set up direct debits
• Banks don’t recognise multiple attorneys
• Banks can be overly cautious
48. And they are often taken out too late
“There are situations when you can’t help, because they lack a POA, that’s
really hard. It’s like they’re in limbo. We apologise, but there’s nothing we can
do.” (Interview participant, front line staff member for a utility company).
LPA’s don’t always work for professionals: there’s no standard consistent
practice on dealing with customers “I think it’d be good to have… uniformity
across businesses as well as what we request from [LPA’s].” (Interview
participant, manager for a financial organisation)
49. Making payments can be stressful
We found that people with dementia sometimes:
• Struggle to pay using preferred methods;
• Get confused due to changes in price, or forgetting the cost of items
• Fail to understand the value of items they’re paying for;
• Feel pressurised and rushed by other customers at the till (some need more
time to insert their card and enter their PIN or count cash)
• Forget to take all their shopping with them
• Don’t collect a receipt
50. Making payments can be stressful
People need a bit of help. But too many questions can make things worse. “My
mum would struggle if she was asked too many questions at the till… our team
members ask a lot of questions. Like ‘Oh, would you like a 10p carrier bag?
Would you like an email a receipt? Or a paper receipt?’ Those kinds of things..,
could make my mum feel very confused.” (Interview participant, carer for
parent and area manager for a large retailer)
Misunderstandings are avoided most effectively when staff can allow
customers the time to move at their own pace.
51. Cash isn’t great for lots of people
Just one in five over 65 prefer to use cash for all transactions. Mmany of our
participants reported not feeling confident of handing over the correct amount.
“Some customers, who may have dementia – but I can’t be sure – are not sure
of their change and stuff like that, e.g. the difference between a £1 or 50p
coin, they need help to check they’re paying the right amount of money… they
get a bit confused with what money is what.” (Interview participant, frontline
staff member at a small shop).
52. Cards might work better than cash for
many
“I'm not good with numbers so I always pay by cards because it's easier and I
don’t want to hold up the queues as people are impatient...” – (Interview
participant living with dementia, without a carer).
‘People with dementia may struggle to get used to contactless payment
(although once they are used to it, it can be beneficial).’
(Focus group participant, DAI Manager for a high-street pharmacy)
“Most people are used to using credit cards, but others may find it hard to
assimilate… it’s those changes in the way people operate… when the dementia
kicks in.” (Focus group participant, DAI manager for a pharmacy)
53. And some love contactless
“…he loved that… because he couldn't remember the PIN number - but [he
could use contactless] it quite often if we went out for coffee. ‘Oh, I'll pay’ -
because he didn't have to worry about how much, getting change or anything
else. So contactless really set him free…” (Interview participant, carer for
partner)
We heard that contactless payments presented risks for some people with
dementia, especially those who struggled with impulse control, as the lack of a
visible transfer of cash could lead to excess spending.
54. But cards need to be usable
Our participants were positive about contactless payments. However
contactless payment limits sometimes led to confusion and distress when PINs
were suddenly required. Some struggle to use chip and PIN because of a lack
of motor skills or memory
“[My husband came out of the shop] brandishing his bank card, dropped it on
the floor, shouting across the carpark asking what his PIN number was. I had to
go back in and eventually got to the checkout… somebody said the trolley was
used by the guy in the red coat and it was my husband. He’d got to the
checkout but he hadn’t been able to use his PIN…”(Interview participant, carer
for partner)
55. New payment innovations can help
Prepaid or restricted cards could protect independence while while avoiding
the risk of overspending.
Sibstar a prepaid card for people living with dementia. The associated app
allows carers to keep track of payments made by this card.
GuardianCard is a debit card designed to give people with dementia or their
carers a safe, simple and secure solution to managing day-to-day finances. The
account holder of the GuardianCard is issued with a card that has money
loaded onto it, on a weekly or monthly basis.
56. What could we do?
People: we need to ensure that people with dementia can access support
from people who understand their condition and who are equipped to help
when they go out and about
Infrastructure: we need to build physical infrastructure that enables inclusion
of the growing number of people living with dementia and ensure we have
the right legal structures in place to enable people to live well
Technology: we need to harness the potential of existing and emerging
technology to make life easier for people with dementia and their carers
57. People
There are three key areas for action:
Ensure staff in retail and leisure settings are available and equipped to
support people with dementia
Make it easier for people with dementia to find support
Develop the future workforce (including volunteers) to be fit for a future
where more people are living with dementia, including by enabling more
people with dementia to work and volunteer
58. Infrastructure
There are two key areas for action:
Implementing dementia-friendly design across new retail and leisure
environments, and adapting and retrofitting existing environments to be
more dementia friendly
Getting the legal framework right to support people with dementia
59. Technology
There are three key areas for action:
Making existing technology more accessible and useable
Building on existing and emerging technology to support living well
Encouraging innovation for the future
60. And finally – people want to help build a
culture of kindness
‘If we are able to do better for people with dementia, we can do better for so many
people with disabilities’ – (Disability manager, retail sector leader).
”It was interesting, even though my teams are really experienced, they still get
different areas of comfort zones, when they have different customers, different
dementia customers with different stages. And even then they still feel a little bit
insecure… ‘Am I doing the right thing?’... And a couple of the comments I had were,
you know, any help support training, guidance, advice, to help all our customers,
especially dementia customers come in and feel that they are they're in the right place
or in a safe place would be really appreciative.” (Interview participant, CEO of a small
retail store)