Looking forward Still much to give - Alzheimer's Society
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December 2021/January 2022
Power of love
A carer’s strength inside
Real-life research
Drawing on lived experience
Great and small
Miniature donkeys delight
Also in this issue
Social care: Urgent action
GLOW: Back with purpose
A HUG for everyone
Looking forward
Still much to give
Welcome
A
s the evenings continue to draw in, we hope
to bring you some warmth and light with
another selection of moving real-life stories
and inspiring ideas.
They say it takes a village to raise a child, and
similar could be said of each issue of Dementia
Donate
together magazine. I’m always amazed and
humbled by the number of you who contribute
your stories and views, without which there would
be no magazine.
Nothing stands still at Alzheimer’s Society,
and the world promises no let-up in challenges Text TOGETHER
to 70660 to
to overcome and problems to solve. However,
with your support and involvement, we know we’ll
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continue to create meaningful change in 2022.
For the magazine’s part in this, we benefit
hugely from your suggestions and comments.
So, whether you’re living with dementia, caring Text costs £3 plus network charge. Alzheimer’s
Society receives 100% of your donation.
for someone who is or supporting the cause in
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another way, please carry on sending us these Customer care 0330 333 0804.
using the contact details below. Charity No. 296645.
Danny Ratnaike, Magazine Editor You can also donate online.
Need support? We’re here for you – see p18.
Dementia together is the magazine for all Alzheimer’s Society supporters and people affected
by dementia. Contact us on magazine@alzheimers.org.uk, 020 7264 2667 or 020 7423 3676.
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News
Social care: Urgent action 4
Looking forward
Still much to give 8
Managing now 12
Back with purpose 13
Try something new 13
Magical work 14
Meet the researcher:
Moïse Roche 15
How I enjoy sport and exercise 16
Q&A: Gina Airey 17
Our research needs you 19
In your area 20
Spotlight: Duncan Jones, Trustee 21
Power of love
8 Dave is focused on the future.
A carer’s strength inside 22
Real-life research
Drawing on lived experience 26
Great and small
Miniature donkeys delight 28
Letters 30
A HUG for everyone 32
A Tattoo on my Brain 34
Festive together 36
Keeping current 37
The ‘invisibles’ 38
Competitions 39
22 Faith and her mum. 32 Designed for a hug.
Copyright ©2021 Alzheimer’s Society – please ask us if you’d like to copy our content or use it elsewhere.
3
News Social care: Urgent action
Your support helped us to achieve outstanding success at recent political
party conferences, where we made our case for social care reform in England
and Wales to the health secretary and many other MPs.
An incredible 7,000 of you wrote to your MP to ask them to attend our
stand at the Conservative and Labour conferences. This led to visits from
NI: Highlight more than 120 MPs, double the amount in 2019.
Visitors included Secretary of State for Health and Social Care, Sajid Javid.
dementia He spoke with our CEO Kate Lee and Julie, a former nurse and social worker
who is living with dementia, about what needs to happen next for social
Help us make sure that dementia care reform. The health secretary visited very few stands, but personally
is included in the Northern Ireland requested to come to ours.
(NI) government’s budget. Julie said, ‘The number of MPs and senior members of government
The Department of Finance is who came to speak with me about my experiences and the Society’s
drafting a budget for the next three #CureTheCareSystem campaign was reassuring, but we really need to see action.
years, which the public will be given ‘People affected by dementia must be able to access a social care system
12 weeks to feed back on. Funding that they can rely on. Words are no longer enough. We now require action as a
is needed to reform the social care matter of urgency.’
system and roll out the Regional Join our calls for action at alzheimers.org.uk/campaigns
Dementia Care Pathway – a vision
for high quality dementia services
that’s supported by the Society.
Martin Reilly, our Public Affairs
Wales social care: Have your say
and Campaigns Officer, said, ‘It is Alzheimer’s Society Cymru wants your ideas on how to improve
really important for people living social care in Wales.
with dementia and their families We’re creating a report on what a new social care system could look like,
that money is given to improving which we’ll use to influence those in power over the next five years.
dementia care. The health minister Send your views on social care reform in Wales to huw.owen@alzheimers.org.uk
has said this will contribute or Huw Owen, Alzheimer’s Society Cymru, S4C Building, Parc Ty Glas,
significantly to raising standards Llanishen, Cardiff CF14 5DU.
across all of Northern Ireland’s
Health and Social Care trusts,
including tackling delays in
dementia diagnosis.’
Budget: Nowhere near enough
Help us make dementia a priority at The Society says the recent Autumn Budget has only ‘added to the despair’
alzheimers.org.uk/NI-campaigns of people affected by dementia.
We had said that an additional £3.9 billion a year was needed for adult
social care in England, but this was not included in the Chancellor’s funding
Trek for us in 2022! plans. Instead, he announced an additional £4.8 billion over the next three
years for local government, of which less than £1 billion per year can be
This year’s Trek26 saw an amazing expected to be allocated to adult social care.
7,176 of you take on 13- or 26-mile Gavin Terry, our Head of Policy, said, ‘After 20 months of devastation and
treks at locations across England trauma for people affected by dementia, the Chancellor has today added to
and Wales, raising £3.8 million and their despair by effectively dealing them a real-terms spending cut to adult
counting! We’re very excited to social care. The proposed additional local funding is nowhere near enough
launch our series of events for 2022, to prop up social care until 2023.’
which includes four new locations We will not give up. The government will soon release white papers
alongside some familiar favourites. outlining its plans for the NHS and social care. As these plans develop, we’ll
You can register for Trek26 at make sure the experiences and needs of people affected by dementia are
alzheimers.org.uk/trek26 or call fully understood by those in power.
0330 333 0804 for more information. Join our campaigns for meaningful change at alzheimers.org.uk/campaigns
4
Memory Walk millions
Directions
M
aking sure people know
that the Society is here
for everyone affected by
dementia, and just how much health
and social care needs to change, are
always priorities for us. So, we’re really
excited about two recent successes
that will help us do this.
ITV’s Good Morning Britain has
chosen us as a charity partner for
their Christmas campaign, 1 Million
Minutes. Throughout December,
they’re asking viewers to pledge time
to volunteer and support good causes.
The campaign is promoting the power
of talking and listening to break down
barriers and improve wellbeing, and
we’re asking people to pledge their
time and become a Dementia Friend.
After being nominated by staff
at The Telegraph, we’ve also been
selected as one of four charities for
their Christmas Charity Appeal. This
runs until mid-January, and last year
it raised an impressive £836,000
total. We’re working with them on
powerful stories across all print and
online Telegraph titles. They’re also
fundraising through a carol concert
and a phone-in day involving celebrities
and their senior staff – all fantastic
opportunities to highlight what we do.
This year’s Memory Walk raised more than £2.3 million for people The festive period brings challenges
affected by dementia. as well as joy, but here at team
Over 24,000 of you took on your own Memory Walk or joined us at one Alzheimer’s, we’re really pleased to begin
of 19 events across Wales, Northern Ireland and England during August 2022 by reaching even more people
and September. through these partnerships. There’ll be
We had fantastic celebrity support from famous faces such as so much more to do in coming months,
actor Vicky McClure, presenter Ruth Langsford and Made in Chelsea so thank you for your amazing support.
star Gareth Locke-Locke. Of course, the incredible success of Memory In the meantime, here’s to a happy
Walk was also down to the work of 1,500 volunteers at the events. Christmas and New Year!
A huge thank you to everyone who got involved this autumn – Kate Lee, Chief Executive Officer
Memory Walk would be nothing without you! @KateLeeCEO
5
Carer support Diagnosis Wonderful
Dementia has a huge mental and
physical impact on the people
delays from Wilko
close to someone diagnosed, Alzheimer’s Society is calling for Our corporate partner Wilko has
but too often they don’t have more government support for raised over £660,000 for the Society.
their needs met. Society-funded GPs and memory clinics in We were one of three charities to
research at the University of England to tackle delays in benefit from their Together for
Exeter has shown how online people receiving a dementia Families programme, which has
and phone support could benefit diagnosis. Memory assessments generated more than £2 million
carers experiencing mild to have decreased by more than over the past four years. Wilko
moderate depression and anxiety. half since the start of the staff raised funds by dressing up,
The study compared the pandemic, with GP assessments completing sponsored walks and
overall wellbeing of over 200 down 30% compared to 2019. even body waxing! A big thank you
people caring for a relative or Some people still haven’t to them and everyone who donated
friend with dementia, before been allowed to visit relatives in stores.
and after they received different or friends with dementia in
kinds of help. These included care homes. We’ll continue to
online educational packages that
provide practical information
work with the government to
make sure that visits are being Sporting heroes
and advice, an online cognitive
behavioural therapy (CBT) course,
restarted for all, so that every
care home resident who has
join our campaign
and an online CBT course with dementia receives essential An impressive line-up of sporting
phone support. CBT is a talking contact and support. names is supporting our Sport
therapy that can help you manage United Against Dementia (SUAD)
problems by changing the way you campaign.
think and behave. They include legendary
The educational packages and
CBT course with phone support Dementia and football stars Denis Law CBE, Sir
Geoff Hurst and Harry Redknapp,
improved people’s scores on
mental health questionnaires
finance Q&A former cricketers Shane Warne,
Alec Stewart OBE and Freddie
after six months. These could Flintoff MBE, and Rugby World Cup
provide much-needed help for champion Ben Kay MBE.
carers with mild to moderate They are all giving their time
depression and anxiety. and backing to SUAD, which aims
Richard Oakley, our Head of to raise funds and dementia
Research, said, ‘This research awareness so that people in
serves as a reminder of the the sporting community get
desperate need for better quality the support they deserve. The
of care for all those affected by We recently joined our corporate campaign will also fund research
dementia. Families urgently need partner Santander for a live to further our understanding of
extra support and the chance to Q&A session on Facebook dementia, including causes and risk
take breaks from caring duties. about dementia and finance. factors particularly relating to sport.
‘Through our funded research An expert panel from the Society For more about Sport
we are listening to those and Santander answered United Against Dementia visit
experiencing dementia first-hand advance and live questions alzheimers.org.uk/SUAD
and giving hope and support to during the one-hour event,
those that need it most.’ offering support and guidance
For our Carers – looking after to people affected by dementia.
yourself (523) factsheet, see To watch a recording of the
alzheimers.org.uk/publications or session, visit www.youtube.com/
call 0300 303 5933. alzheimerssociety
6
New online Our Annual Vegan and
self-help guide Conference vegetarian values
My Life, My Goals is an online Join professionals, policy makers A new guide aims to help people
self-help guide for people in the and people affected by dementia receiving care to protect their
early stages of dementia, created to discuss key issues relating vegan and vegetarian values, both
by people with dementia and to diagnosis and support at now and in the future. Created
researchers. It’s designed to help our Alzheimer’s Society Annual by charity Vegetarian for Life,
people, step by step, try to Conference 2022. The conference the self-advocacy pack provides
achieve their goals. takes place on 17 May, during information, sources of support
Download your free digital copy at Dementia Action Week, at the and suggested actions.
www.tinyurl.com/My-Life-My-Goals Park Plaza Victoria London hotel. Download the pack for free at
Registration opens in early January. www.tinyurl.com/VfL-Publications
Register your interest now at or call 0161 257 0887 to order a
alzheimers.org.uk/conference copy for £2 plus postage.
Have your flu jab Years of stories
Every year the flu vaccine saves It’s been four years since we
lives by stopping thousands of began sharing audio interviews
people from becoming seriously online, so you can hear people with
ill from flu. This winter, it’s more dementia tell their stories in their
important than ever that people own words. Join our thousands
who are at higher risk of severe of listeners today!
COVID-19 have their free flu jab. Listen at alzheimers.org.uk/podcast
Visit www.nhs.uk/flujab for or wherever you get your podcasts.
further information and to find
local pharmacies that offer the
flu vaccine.
Don’t miss...
Carols at Christmas Jim in Oxford, who has Alzheimer’s
and vascular dementia, says
Carols at Christmas returns on 15 December, and this year we’re doing sleeping so much takes time away
something very special! Watch the festive extravaganza snuggled up from him. See p12.
on the sofa, or join us in person at Southwark Cathedral in London.
The evening of celebration is hosted by Grace Dent and Arielle Free, Ruth in County Down is looking forward
with special readings from Sir Jonathan Pryce CBE, Lesley Manville CBE to the return of night-time GLOW walks
and Ed Balls. There’ll be music from singer-songwriter Bea Anderson, in March. See p13.
identical twin sopranos Classical Reflection and Britain’s Got Talent
semi-finalists Shalom Chorale. Emdad in London became a Dementia
Get your tickets at alzheimers.org.uk/carolstickets or by calling 0330 333 0804. Friends Champion by accident but
hasn’t looked back since. See p14.
Meet Cherie, Research Engagement
Officer, and Duncan, one of our
trustees. See p19 and p21.
Society-funded research is involving
more people affected by dementia in
its design and development. See p26.
77
Quick read
Dave Gibbons, who is 56
and lives in Bradford, is
focused on the future
after enduring many
challenges with his health.
Dave has Alzheimer’s
and Korsakoff’s
syndrome, which has
many of the same
symptoms of dementia
and is caused by drinking
too much alcohol.
Dave has experienced
blackouts, confusion and
memory loss, but has also
received strong support
from Alzheimer’s Society.
He chooses not to dwell
on the past and is instead
looking forward to more
positive times, as he still
has much to give.
8
Looking forward
Despite his difficult past and many health issues, Dave Gibbons is focused
on a more positive future. Gareth Bracken meets a man with dementia who
still has much to give.
‘I
t’s been a colourful one, without ‘I’d cut strips of wire to certain I can’t. What’s the difference
a doubt,’ says Dave Gibbons, lengths for florists and clothes between them and me?’
reflecting on his eventful life horses,’ he says. ‘I cut the metal Dave used to have blackouts
and the many health challenges bits that were used in sparklers in that left him unable to
he’s faced. the 80s.’ remember conversations from
Dave, who is 56 and lives in He worked as a bricklayer for the night before.
Bradford, was diagnosed with 15 years, before moving to London ‘It got quite dangerous and I
Alzheimer’s last year. He already in his late 20s. ended up in hospital,’ he says.
had Korsakoff’s syndrome, ‘My mum had passed away ‘The alcohol people there said
a condition that has dementia- and I was just getting divorced, I had Korsakoff’s – I didn’t know
like symptoms. so it was a difficult and hectic what it was.’
Dave’s relationship with alcohol time,’ he says. ‘I think I’d had a bit
is central to his story, which he is of a nervous breakdown, so I Low awareness
very keen to share. went to London to see if I could Around six or seven years ago,
‘I’ve got no qualms over who I right myself.’ Dave was diagnosed with
am, where I am or where I’ve been,’ Dave spent five years as a Korsakoff’s syndrome, a condition
he says. ‘I’m not ashamed of it, it’s street cleaner in Hillingdon that has many of the same
who I am.’ before returning to Halifax to symptoms of dementia,
work as a night porter and hotel including confusion and memory
Obscure artists security guard. loss. It is caused by drinking too
Dave is from Halifax but lives on his ‘There was lots of partying much alcohol.
own in nearby Bradford. His main going on,’ he says. ‘I was maybe ‘Korsakoff’s is a dangerous
hobby is listening to jive, rock and drinking too much.’ thing,’ says Dave. ‘You’re not
roll, and rockabilly music from the only an alcoholic but you’ve got
1940s and 50s. Alcohol problem dementia problems as well.
‘I like the more obscure ones, Dave describes himself as ‘I think awareness of
not your mainstream. People who someone who ‘suffered with Korsakoff’s is low. They might
didn’t make it into the charts,’ he alcoholism’. be the silent dementia people
says. ‘I used to have thousands of ‘I was a functioning alcoholic. who only get recognition for their
records but they got destroyed or I’ll admit it did take over my life,’ he alcoholism. “Don’t bother with
damaged. Now I listen on YouTube. says. ‘It caused me a lot of trouble them, they’re an alcoholic”.
‘I like to look as if I’m in the with family, friends and the police. I I’ve had it all the time.’
1950s, hence the quiff!’ lived on the streets for a while.’ Dave attended rehab
Dave also enjoys walking and It took Dave a long time to groups for alcoholism, later
cycling, following rugby and cricket, come to terms with the fact that gaining the qualifications to
and spending as much time with he had a problem. facilitate groups for others with
his family as he can. He has four ‘I like the atmosphere around drug and alcohol problems. He
children and five grandchildren, drinking – it’s just I can’t drink in became chair of a service user
with one more on the way. a social way. I don’t have a stop group and gave talks across
button. I don’t know when that last West Yorkshire about the
Difficult time drink is,’ he says. importance of listening to the
Dave’s first job after leaving school ‘I still find it hard that other views of people who are using
was as a wire cutter. people can drink every day and healthcare services.
9
“
House fires more withdrawn, however, after
Dave was also diagnosed with a period in hospital with
Alzheimer’s in June 2020, after pneumonia in the summer.
some worrying incidents. ‘I isolated a little bit from the
‘I’ve had a few house fires, I was a functioning groups and my family,’ he says. ‘I
because I’ve been forgetting when wasn’t feeling confident enough
I’m cooking,’ he says. ‘I tried to put alcoholic. I’ll admit in myself to be sitting and talking
one of them out and ended up with people. I think I were a bit
in hospital. After the last fire, the it did take over down and depressed.’
fire brigade got in touch with my ‘Doing this article is another
doctor for me.’ my life,’ he says. step to me getting back out there,
Dave was also sometimes getting my confidence back up.’
experiencing confusion and ‘It caused me a
struggling to follow conversations. Good times
He visited the doctor in November lot of trouble with Dave also has chronic obstructive
2019, who referred him to a pulmonary disease (COPD) and
memory clinic. He then had a family, friends and found life very difficult during
home assessment and two periods of lockdown. He’s had both
brain scans, which led to the the police. of his COVID vaccines and recently
”
Alzheimer’s diagnosis. received a letter about booking his
‘It was quite a shock, I didn’t booster jab.
want to believe it,’ he says. ‘I still As we hopefully continue to
find it hard believing it.’ emerge from the pandemic, Dave
It took a while for doctors to chooses to look forward rather
pinpoint the right medication for than back.
Dave, but he now feels that well as Zoom, so even better,’ he ‘I’ve got no regrets – I can’t do
things have improved, though says. ‘I find it hard when I first meet nowt about the past, so I don’t
he can still sometimes display people to open up and be myself, dwell on it,’ he says. ‘It sounds
unexpected behaviour. but these groups have really harsh, but if I worried about the
‘I have arguments with people helped me.’ bad things I’ve done in the past…
who aren’t even there – it can be I can’t change that. You’ve got to
quite funny,’ he says. ‘If I didn’t Getting back move on.
laugh at it, I’d be crying at it.’ Dave has lymphoedema, a ‘At the moment, life is OK and
chronic condition that causes I’m looking forward to the future.
Open up swelling in his ankles, which My son has just completed his
Dave enjoys attending a support affects his mobility. He receives diploma for the building trade.
group called Pathways, part of support from private care workers, There is gonna be some good
DEEP (Dementia Engagement and arranged through Atiq Hassan, the times around there.
Empowerment Project), and two Society Dementia Adviser who also ‘The Alzheimer’s diagnosis
groups – one local and one national put him in touch with the groups. means I can now focus on
– run by Alzheimer’s Society. Atiq also helped Dave apply for my own journey with alcohol.
These give Dave and others with Personal independence payments There’s so much I can give back,
dementia the opportunity to (PIP), a benefit he now receives for if I stay sober.’
influence our and others’ work. people with a long-term condition
‘We make sure places are who have difficulty with everyday
getting dementia friendly by giving tasks or getting around. For our What is alcohol-
feedback on what we’d like to see,’ ‘Atiq has done quite a lot for
says Dave, who provided input me,’ says Dave. ‘He points me in
related brain damage
into the refurbishment of his local the right direction.’ (438) factsheet, visit
Alhambra Theatre. Dave receives good support alzheimers.org.uk/
‘The Face it Together group in from his sons with the likes of publications or call
Bradford is all nice people, and shopping, and his neighbours
I’ve met them in person now as also look out for him. He became
0300 303 5933.
10Donate
You can keep people diagnosed with dementia in
See alzheimers.org.uk/ touch with the support and help they need.
dementiadirectory to Donate now
find support near you.
11Managing now
Jim Herrick in Cambridge, aged 77, tells us how Alzheimer’s and vascular
dementia are affecting his day-to-day life.
My partner died of dementia telling people some things about
with Lewy bodies some years ago. me, but I don’t like telling them I
I had a grandmother and aunt who have Alzheimer’s.
had Alzheimer’s, which makes me I’d be prepared to consider
wonder if it’s in the family. attending a dementia-specific
There’s a park a few minutes LGBT group, where I can be myself.
away. I go there a few times a week I don’t especially want 100% of my
for a short walk. I feel in command friends to be gay, but it’s nice to
of that. have some.
I have a carer who does
shopping for me. I go to the For our Understanding
theatre. I go for meals with people sleep problems, night-time
sometimes. I go to coffee bars. Life disturbance and dementia (534)
isn’t too bad really. factsheet or LGBTQ+: Living with
I did a lot on the computer dementia (1511) booklet, see
before I retired, but now I don’t find alzheimers.org.uk/publications or
it easy to proceed with the internet, call 0300 303 5933 to order.
which is a nuisance.
But I did do quite a few Zoom
calls during lockdown, with friends
I
and a book club. I played chess on
think my illness has advanced Zoom, but I’m finding that more
reasonably slowly. I live on my difficult now. I look at the strategy
own, I look after myself. So I can and my mind goes foggy.
manage, although I’m not quite I attend a mature gay men and
sure how long I can manage for. women’s group in Cambridge now
I fear I must expect the disease and then. They meet once a week
to advance. People seem to have and during lockdown it had to be
enormously different experiences. on Zoom.
I read quite a lot. I can read a
book and remember it, and not get Support
lost. I can watch a television thriller I used to get a call about once a
and not get lost. I do forget things, month from Alzheimer's Society. I
but doesn’t everyone? didn't know sleeping so much can
The main thing – and I think it be a symptom, but the dementia
is due to the Alzheimer’s – is that I support lady told me that. It's really
go to bed for a couple of hours, at helpful to know.
least twice a day, and that takes Age UK organised someone
time away from me. who visits once a week, just to
have a chat for an hour. I’ve been
Control impressed by both Age UK and
I feel in control of my life at the Alzheimer’s Society.
moment. There’s a certain amount I think the prejudice against
of solitude, because I live on my Alzheimer’s is possibly worse than
own, but that was true even before the prejudice against gay people.
the Alzheimer’s. I notice in myself – I don’t mind
12Try something new
Give an hour or two
Back with purpose
Photograph: iStock.com/Drazen
Ruth Fitzgerald in Newtownards, County Down is
looking forward to the return of GLOW sponsored
night walks in 2022.
Spend an hour or two each week
chatting to people affected by
dementia on the phone as a
Companion Call volunteer.
A simple conversation about
the weather or what you’re
watching on TV can be a lifeline
for so many lonely and isolated
people. To find out more, email
CompanionCalls@alzheimers.org.uk
or call 0115 959 6176.
Change future care
Share your experiences of dementia
with healthcare students so that
future professionals have a better
I
understanding of the condition’s
did my first Memory Walk in were so many people there. I didn’t real-life impact. Time for Dementia –
2013 – I’ve got quite a few think so many people would walk which organises student visits
Memory Walk T-shirts and quite at night! And there were loads of with families in the south of
a few medals! spectators. We were getting lots England – is now involving
I found out that some of my of support. people based anywhere in the
family had dementia, and then I later discovered there was UK through video calls. Email
discovered that two of my friends’ somebody there who I knew, who timefordementia@alzheimers.org.uk
parents had actually died from it. did it as well, but I didn’t know until or call 07713 779582 to find
My father-in-law especially was the afterwards – she saw me dancing out more.
reason I did my last Memory Walk. about the stage while we were doing
When I saw GLOW advertised, the warm-up!
I thought, ‘Walking in the dark – I I raised £130, and there was a
quite fancy trying that for a change!’ Memory Tree where you can leave
a message about the person you’re
Play a memory
Night-time walk walking for. It was full of messages game
GLOW is a sponsored walk in the by the end of the night.
early evening, just as it’s getting I would do it again and I’d Enjoy simple, fun quizzes on the free
dark. It has a great fun atmosphere definitely recommend it. It’s not just Memory Lane Games app. Designed
– we wore glowsticks because it about going for a walk – you’re doing to be easy to use and to prompt
was dark. it for a purpose. reminiscence and conversation,
There were GLOW walks in nine try games with topics like Animals or
cities in 2020, and I did the Belfast GLOW is back this March in more Geography, or with questions about
one, which began at Titanic Belfast. locations than ever before. Find your your local area.
There was a good atmosphere nearest event at memorywalk.org.uk Find Memory Lane Games on the
at the walk. When I turned up there or call 0300 330 5452. App Store or Google Play.
13Magical work
Emdad Rahman in east London shares how he became a Dementia Friends
Champion and hasn’t looked back since.
which is wonderful and really
helps. I’ve also held a session at
a synagogue, and the local
gurdwara want me to go there.
The sessions can have a major
effect. Sometimes people get
emotional, I get a lot of gratitude.
When we raise awareness, we have
the support of the community.
People still keep their badges five
years on.
I’d 110% recommend becoming
a Dementia Friends Champion,
without a doubt. The main obstacle
people face is time. But I say that if
you love doing it, it’s never a chore.
I
You make the time for it. It’s one of
work and volunteer in Tower Club, a charity mountain climbing the best community things I’ve ever
Hamlets and in Barking and group, in town halls, mosques done. Alzheimer’s Society provides
Dagenham. I became a and community centres. I’m a support and training resources.
Dementia Friends Champion practising Muslim but I went to a Together, we’re making a
purely by accident! Sunday service at church – people difference all the time – every
Since the London 2012 were very welcoming and friendly. single day, and the results are
Olympics I’ve loved the ‘welcoming A memorable moment for me wondrous. It’s magical work and
the world to my city’ idea. I was was making a Dementia Friend will continue to benefit and help
at Lords, training to become a of the late great Max Levitas, countless people.
voluntary matchday steward. who fought off Oswald Mosley’s
The training started with a Blackshirts. A complete folk hero You can become a Dementia Friend
Dementia Friends information and a good friend. He saw the by taking part in an online session,
session from two champions. leaflet in my hand and wanted and also by watching our online
They said that I would be decent to become a Dementia Friend, videos. Visit dementiafriends.org.uk
as Dementia Friends Champion. aged 100. to get involved.
So I did the training and I haven’t More recently, I did an
looked back since. information session with Dabirul
Choudhury OBE, who’s 101
Amazing people years old (pictured). He’s raised
I’ve held information sessions at hundreds of thousands of pounds
exciting places and with amazing for coronavirus relief by walking,
people. I just finished a session inspired by Captain Sir Tom Moore.
with the official Speaker and
First Citizen of the London For everybody
Borough of Tower Hamlets. My approach is for everybody,
I’ve held them at banks and although because of my
the Mayor’s Parlour, for matchday background, I can reach out to
stewards at Leyton Orient Football the Asian community in particular,
14Meet the researcher:
Moïse Roche
PhD Researcher at UCL in London.
Favourite things? dementia, as well as improving the
Film – It’s always a challenge wellbeing of older adults through
when I am asked to pick one collaborative work.
favourite thing in an area of
interest, as I have quite an What difference do you hope
eclectic approach in life. My this will make?
choice will also depend on I hope it will improve experiences
my mood and what I fancy at and outcomes for Black families
the time. But, if I had a favourite living with dementia and, at the
film, it would probably be The very least, begin chipping at health
Shawshank Redemption, with inequalities related to social
Morgan Freeman and disparities. The current pandemic
Tim Robbins. has further highlighted that, to
Way to spend time – When I’m address health inequalities, we need
not working, I could be working to consider the wider social context
out at the gym, catching up in which people live.
with family and friends or
checking the latest outrage on In what direction would you
social media. How has Alzheimer’s Society like to take your research in
Memory – I don’t think I have supported your work? future?
a favourite memory. But, in Alzheimer’s Society has funded I would be interested in seeing that
the current climate, memories the research for my PhD, as well research, services and interventions
of my holidays in Guadeloupe are as making my initial proposal for it are developed from the outset with
surfacing more frequently. better by thoroughly reviewing it. the whole population in mind, and
Alzheimer’s Society also provides include in their design a subset of
Why dementia research? ongoing advice and support each group they intend to serve.
I always had an interest in how through the monitoring done by
memory works and what might Research Network volunteers.
affect it. But then, some years
ago, I started to volunteer with What are you currently
Alzheimer’s Society and became working on?
interested in finding out why so few My main research is seeking to
people from Black backgrounds improve dementia support and
seemed to use dementia services. experiences for people of Black
It was as if dementia did not affect ethnicity and their family carers.
people of Black ethnicity as much as I am also working on various
other ethnic groups. Of course, we other projects to address health
know this isn’t the case. inequalities of people living with
Your donation helps us to better understand and address health
Donate inequalities in dementia. Donate now
15How I enjoy sport and exercise
We ask people how they keep well, whether they have dementia or not. This
issue, we hear about taking part in exercise and watching sport.
Dorothy Dwayre-Wood, 61 Michael Davies, 65 in Oxford Anne Baxter, 62 in London
in Manchester with semantic dementia I am a West Ham season ticket
holder and go to the home games,
and I like watching tennis, athletics
and golf on the television.
I have always loved going to
football matches, as my dad took
me as a child and I find that it helps
with my wellbeing.
I enjoy going to watch our local Cycling with Oxford Cycling Club
football team, FC United of at least once a week and running
Manchester. Myself and my husband about four days a week. I started
have been members since this fan- in about 1978 and have always
owned club started in 2005. been focused on racing. I now
Our family ranges from don’t do racing because I want to
10 to 83 years old and we all enjoy be cautious with my body, so I can
being able to share in this pastime always run each year.
together. It’s an afternoon where My dementia doctor has
you can watch great ‘grassroots’ suggested that maybe my current
football together. state is better because of my
It takes you away from your running and cycling life.
‘normal’ life, home commitments
Stay well
and work demands. During the Sue Peters, 54 in Leicester
pandemic, we were allowed to go
to some matches by booking online
and socially distancing. It was Some things, like age and
some sort of normality for us and, genes, affect your chance
although not as busy as it used to of developing dementia but
be for obvious reasons, we still felt you can’t change them.
that ‘life was good’.
Things you could do include
Cassie Philip, 50 in keeping your mind and body
Eastbourne active, enjoying healthier
I play tennis with friends and food, not smoking, drinking
others who are members of the Walking, the best exercise a less alcohol, staying in touch
tennis club, watch rugby with a human can take! It’s natural, with people, and dealing with
select few friends who are fans, healthy, outdoors and mentally any health problems.
and go walking with friends when stimulating. A different walk each
I can, and otherwise on my own. time; new sights to see, new smells If you already have dementia,
It’s for my fitness and to sniff out and new experiences the same things can help
wellbeing, and staying as young to indulge in. you to stay well. Visit
and healthy as I can into older It uplifts the soul and makes me www.nhs.uk/livewell for
age. I know that it makes me feel relaxed, calm and at peace. I wellness advice for everyone.
feel much better within myself when do it to lose weight, get fitter and
I exercise, especially with friends. improve my mental health.
16Q&A: Gina Airey
Gina Airey in Lancashire, aged 62 with vascular dementia.
How has Alzheimer’s Society If you could go back in time,
helped you? where would you go?
A real positive impact! Initially Lots of happy memories during
they helped me through my teaching years and when my
Companion Calls, which are still children were young, but the first
ongoing – my friend rings me image that came in my head when
regularly and we chat about a I read this question was me as a
range of subjects. child on the beach with my dad on
Recently I have got involved holiday – perfect!
with Society visits to the local
prison to give talks to staff and What is your most treasured
inmates on my own experiences. possession?
This has been truly empowering! Currently it’s my car. It means I can
The sense of being purposeless get out and about to see family,
in society can be difficult to keep independent and continue to
manage when you have worked help through the Society visits.
in a social profession. I was a
primary headteacher when If you have dementia and
What’s changed most since I had a stroke, which resulted would like to answer our questions
your diagnosis? in my later diagnosis of vascular for a future column, email
In many ways it has opened up new dementia. It has been so magazine@alzheimers.org.uk
doors. I knew I would have to focus rewarding to again feel I can help
on my own wellbeing – keeping in some way.
mentally and physically active and
keeping positive. What song or tune sums up
I spend time every morning on your life so far?
crosswords and puzzles. I enjoy We Are the Champions by Queen.
gardening and love to learn new I have faced a few challenges
skills, while continuing with my in my life, but I do think you
endless creative hobbies. I sew and should keep positive and you
knit clothes, try new recipes and will always be victorious… and
bake my own bread. Occasionally if I had to choose a tune for my
I paint with acrylics and oils, and life now it would be Don’t Stop Me
I wish I was a better photographer. Now by Queen!
What would you take to your What single thing would
desert island? improve your quality of life?
I am not really attached to objects. I would love to see and spend
I am resourceful and would probably more time with my family.
embrace the environment and My children are grown up with
enjoy exploring, but maybe paper their own work and family
and pen to write about the experience. commitments, but they are
Teaching wasn’t my first choice very supportive (or as much
of career, I always wanted to be a I will let them). They know I am
writer. I would take the book I’m fiercely independent and, to
halfway through – Driving Over quote them, I’m only following
Lemons by Chris Stewart. the saying ‘Use it or lose it!’
17We are here for you
Phone support
Our dementia advisers are available on the phone seven
days a week, providing information, advice and emotional
support to anyone affected by dementia.
Online support ‘No matter what
Find a wide range of information on our website to help
you understand and live with dementia. Visit our online
you’re going through,
community Talking Point to connect with others in a similar there is someone who
situation and search for local support services on our
dementia directory.
understands. I don’t
feel alone now.’
Face to face support
Some face-to-face support services are reopening. Where Person living with dementia
it is safely available, our dementia advisers will connect
you to relevant face-to-face support in your area, from
one-to-one advice services to local support groups.
Contact us today
0333 150 3456
alzheimers.org.uk/getsupport
alzheimers.org.uk/getsupport
18
Registered charity No. 296645 21065SDOur research needs you
After a challenging year, Cherie Nyota, Research Engagement Officer, shares
how our Research Network is looking forward to welcoming new volunteers.
expert researchers. Some monitor diverse society, researchers need
the research that we fund too, to connect with people with a
meeting with researchers once wide range of experiences and
a year to review each project’s backgrounds.
progress. Importantly, this also We’d love to hear from people
gives researchers a chance to hear interested in joining the Research
more about our volunteers’ own Network who have a dementia
experiences of dementia. diagnosis or who are carers or
Due to the pandemic, we were former carers of people with
forced to pause our research dementia. And, since great
funding programme and the research involves people affected
Research Network’s usual by dementia from all backgrounds,
activities in 2020. We quickly we particularly want to include
adjusted and focused our energy people from Black, Asian and
on how we could still support our minority ethnic and LGBTQ+
volunteers and researchers. Online communities within this.
meetings were brand new to many
volunteers, but we all learnt to Find out more and apply to join
navigate them and Zoom soon our Research Network at
became our best friend! alzheimers.org.uk/researchnetwork
Online Research Network
I
meetings gave more volunteers
nvolving a diverse range of than ever before the opportunity
people affected by dementia in to share their experiences
research is one of my biggest of involvement in research
aims. We want people from all projects with each other. We
backgrounds to know how they can also hosted regular ‘Dementia
take part, and we have a wonderful Research Uncovered’ webinars,
group of volunteers who dedicate with researchers presenting
their time to support dementia their projects and asking for
research at Alzheimer’s Society – feedback and advice from network
the Research Network. volunteers.
All our Research Network We’ll continue to incorporate
volunteers have a personal these into how we work, with
connection to dementia, whether monthly online meetings and
as carers, former carers or webinars. Since our funding
people living with dementia. Their programme recently reopened, our
involvement ensures that the volunteers are now busy reviewing
research we fund is relevant and the latest funding applications
credible, and could ultimately submitted by researchers.
transform the lives of everyone We are also delighted to
affected by dementia. offer the opportunity for more
Network volunteers review people affected by dementia to
every application for research join our Research Network. To
funding we receive, guiding our ensure that dementia research
funding decisions alongside is truly representative of our
19In your area
Photograph: Scrivens Opticians & Hearing Care
Loomband love Awesome heights Scrivens support
A nine-year-old in Antrim has Care workers from Denbighshire A Solihull opticians marked World
raised hundreds of pounds for the County Council raised more than Alzheimer’s Day on 21 September
Society after seeing how dementia £1,100 for Alzheimer’s Society in an by raising both awareness and funds.
affected her grandfather. eight-hour walk, taking in three peaks. Staff at the Shirley branch of
Emma Kirkpatrick used her Staff walked three of the Scrivens Opticians & Hearing Care
creativity and initiative to make toughest walks in Denbighshire left their uniforms hanging in favour
beautiful loomband bracelets – Gwaenysgor, Moel Famau and of their own colourful outfits. They
and raised £415 by selling them Castell Dinas Brân in Llangollen – on also donated £1 for every hearing
to family and friends. Sadly, her 25 September, the peaks having a test taken that week.
grandfather died just days before total height of over 1km. Parveen Joyce, Branch Manager,
she presented a cheque to Society Katie Newe, the council’s Service told local press, ‘Alzheimer’s Society
volunteer Mark Bingham (pictured). Manager responsible for care has been our company’s charity for
Elaine, her mum, said, homes and domiciliary care seven years and one that is close
‘I’m so proud of Emma for provision, said, ‘I am so pleased to our hearts because it affects
her determination to make a we managed to complete this so many families. My father has
difference to people affected by challenge. There were three dementia, so I know first-hand what
dementia after being inspired by challenging walks and 12 determined a cruel condition it is.’
her Granda and his journey with people, and we raised lots of Scrivens, a family business with
dementia. Despite her Granda’s money for a great charity as well as roots in Birmingham and branches
recent passing, Emma wanted celebrating the amazing work that across England and Wales, has
to go ahead with the cheque care workers do every single day. raised funds through everything from
presentation to Alzheimer’s Society ‘I am very proud to be part of this marathons to cake sales, as well as
as a tribute to him. awesome team and I would like to making sure their staff can better
‘Emma is delighted with all the thank everyone who donated.’ support people affected by dementia.
support she received and is very The event also supported Uncorrected hearing loss has
proud that her efforts will help Social Care Wales’s WeCare Wales been linked to an increased risk of
Alzheimer’s Society be there for campaign by highlighting the developing dementia, and hearing
more people affected by dementia invaluable role of care workers in tests can help you manage any
and create a lasting change.’ Denbighshire. hearing loss early on.
Linzi Stewart, Community Andrew Hall, Community Mark Bentley, Sales Assistant
Fundraiser, said, ‘Following a Fundraiser at the Society, said, ‘We at the Shirley branch, lost both of
difficult year for people with are so very grateful to Katie and his grandmothers to dementia. He
dementia, we are in awe of her team. It is fantastic to see our became a Dementia Friend through
supporters like Emma whose amazing supporters undertaking our partnership with Scrivens.
brilliant fundraising efforts enable these challenges after such a Mark said, ‘I now have the tools
us to reach more people through difficult 18 months. This will make to help manage the situation when
our vital support services, like the a huge difference to people living it arises, with empathy, kindness
Dementia Connect support line.’ with dementia.’ and patience being key.’
20Spotlight:
Duncan Jones, Trustee
Why dementia, why Most important thing
the Society? learned from a person
My story is quite a familiar one. with dementia?
I first became involved with the It sounds obvious but everyone
Society when my mother was we speak to is an individual. See
diagnosed with Alzheimer’s disease the person, not the dementia.
in 2009. I didn’t know where to turn Soon after diagnosis, my mum
and Alzheimer’s Society provided seemed to forget all of our shared
me with support and answered Duncan and Mary. memories and I quickly learned to
some of the questions buzzing try to be with her, wherever she
around in my head. was in her mind.
In 2012, I took voluntary
redundancy after 27 years with the Most looking forward to?
BBC to support Mum and to give me I am looking forward to spending
time to volunteer for the Society. time with friends in person, rather
than via my laptop, and returning
How to fill an unexpected to live sport, music and theatre.
day off? I’d say watching my football team
I love running so the day would trying to win promotion back to
start with some exercise. I’m the Premier League, but I’m not
hoping my wife, Mary, has an sure how much I’m looking
unexpected day off too. If so, we’d forward to that!
arrange to meet friends for a long,
convivial lunch, ideally outdoors.
There would also be time to listen Duncan with his mum, Jan.
to music, perhaps at a live concert,
and to read. Worst advice you’ve
been given?
Proudest achievement? While studying journalism, I was
Personally, I think it’s the new offered a job by the BBC in Kent.
relationship I formed with my mum The person who’d interviewed me,
after she was diagnosed. We’d and then offered it to me, turned
always been very close, but her around and told me I shouldn’t take
dementia meant we needed to find it because if I left my journalism
new ways of connecting. course early, I’d never have a career
Professionally, it probably came at the BBC. I ignored the advice and
during the first Gulf War. I was a am still working there, now as a
sports producer and reporter for freelance, 35 years later.
BBC News but was seconded to
the general news reporting team Biggest priority for coming
to cover for colleagues in the Gulf. months?
I suddenly found myself – at half It has to be the delivery of
an hour’s notice – covering an Alzheimer’s Society’s new strategy.
IRA court case for the six o’clock This is a watershed moment for
news. It was the first time my face the Society, coming out of the
had appeared on the screen and, pandemic, and what we do and
apparently, I looked so nervous my say now will shape what we can
family didn’t recognise me. achieve for years to come.
21Quick read Faith Walker in Cardiff wants to highlight the power of person-centred care for people living with dementia. Faith’s mum, known by all as Mrs Walker, was diagnosed with Alzheimer’s and vascular dementia in 2014. Mrs Walker received poor care in a care home before much more positive experiences in hospital and in her current home. Faith is passionate about the importance of care that embraces a person’s culture, such as her mum’s Jamaican heritage. 22
Power of love
Faith Walker has witnessed the best and worst of care while supporting her
mother. Gareth Bracken meets a daughter passionate about never losing sight
of the person with dementia.
‘I
can’t find the words sometimes Talbot in south Wales in the 1960s. from a psychiatrist. In 2014, they
to explain the depth of pain, ‘My parents were both from diagnosed her with vascular
looking at someone who lived Jamaica, but they met and fell in dementia and Alzheimer’s.
life to the fullest and was such an love in Port Talbot,’ says Faith. ‘It’s ‘I went into autopilot: “What
amazing person,’ says Faith Walker where I was brought up, in a can I get into place?”’ says Faith.
of her mum, who has Alzheimer’s close-knit community of Jamaican, ‘The community mental health
and vascular dementia. Welsh and Irish people. nurse put us in touch with an
Faith finds it difficult to ‘Yes, there was racism, but occupational therapist, who
recount some of her more there was also kindness and love.’ was an absolute godsend.
troubling experiences. However, Faith is one of 10 children, ‘She gave Mum respect
she’s determined to highlight the many of whom represented and didn’t treat her like she
best and worst of the care that Wales at sport, while the next was ill. She connected with
her mum has received since generation have enjoyed Mum, built a rapport and put
being diagnosed. successful working lives. her at ease. It was textbook –
‘I’ve seen it when it goes so ‘That shows the depth of my better than textbook.’
wrong, and so right,’ says Faith, parents’ love and resilience,
who lives in Cardiff, south Wales. and my mum’s influence on the Big decline
This is also where her mum Ivy grandchildren, who she loved Mrs Walker’s husband had died
– known by all as Mrs Walker – is so much,’ says Faith, who also many years earlier and she was
thankfully now happy and settled. recalls her mum’s brilliant time now a carer for her fiancé. But
‘My mum is a very strong management skills. the death of her own mother and
lady, and there’s a strength in me ‘She’d come and watch our partner in quick succession led to
somewhere that’s pushing me to games and still manage her a big decline in her health.
tell my story. Maybe it’s from my home so efficiently. We were all ‘It was grief, plus dementia, plus
mum. It’s what she would want.’ immaculate, well-mannered and the lack of routine as a caregiver
had beautiful, healthy food to eat. that made everything accelerate,’
Close community ‘We all think we were her says Faith.
Now 80, Mrs Walker grew up in favourite because she had a way ‘She’d say, “I’m losing my mind
Jamaica before coming to Port of knowing each of us and loving us and I don’t know what to do.”
all equally. My parents were about That was heartbreaking. She was
education, health, love, care and petrified, it was horrible.’
being your best self.’ After a fire at home, Mrs Walker
went to stay with Faith’s sister in
Respect and rapport Germany, then went to live with
Faith first noticed that something Faith herself.
was the matter when her ‘She was trying to be
mum started to become less independent and formidable, but
organised and efficient. didn’t realise she was putting
‘I’m thinking, “Oh my gosh, herself at risk,’ says Faith.
Mum’s forgetting dates. ‘Carers came morning, lunch
Something’s not right,”’ she says. and evening, as her support needs
Mrs Walker visited a doctor became greater. Then she went
and memory clinic, before into a care home. That’s when the
receiving a home assessment nightmare really began.’
23‘The nurses there were friendly ‘I looked at Mum and in Patois
and smiling. They were reassuring she said, “I’m not ready to go yet,”’
Mum,’ says Faith. ‘It was like going recalls Faith.
from hell to heaven.’ ‘The next day I came in and
she was sitting up in bed talking!
Dementia experts The nurse said it was the power
No nursing home was available of love.’
that could fully meet Mrs Walker’s Mrs Walker eventually came
needs, and she stayed at Tonna off the end of life care plan, before
Hospital for the next four years. contracting and recovering from
‘Mum shouldn’t have been COVID. She now lives in a nursing
there, but in the time she was home in Cardiff, a three-minute
there, they made it the best they walk from Faith, having been
could,’ says Faith. discharged from hospital in June
‘They met her needs, cared for under NHS continuing healthcare.
her, loved her. They tried different ‘The staff are beautiful – really
approaches, like creating a mock diverse and culturally competent.
living room with family photos. Mum is so chilled!’ says Faith.
‘They weren’t just dementia Faith is passionate about
friendly, they were dementia experts.’ addressing health and social
Faith was especially happy inequality, and promoting the
to see the hospital recognising importance of high-quality
Hell to heaven and embracing her mum’s dementia care. She has supported
In August 2016, Mrs Walker moved cultural needs. organisations such as Diverse
into a large care home in Port ‘All the staff were white, like in Cymru and Carers Trust Wales with
Talbot, which it soon became clear the care home, but they listened research, resources and reports.
couldn’t meet her needs. and wanted to learn,’ she says. She says, ‘Person-centred
‘They never followed her care ‘They had conversations about care is paramount to meeting
plan,’ says Faith. ‘They were Jamaica as part of life story work. someone’s complex and cultural
supposed to encourage her to Occupational therapy activities needs, so never lose sight of the
eat, but they gave her food and included making dumplings, food person who is living with dementia.’
walked away, then said she that Mum could identify with. They
wasn’t eating. told us to bring in CDs of music
‘They were short-staffed and that Mum liked.
wanted her to stay still, so they ‘They created a safe
increased her medication. When environment where Mum felt she
she was soiling and trying to could belong. Mum was at the
clean herself, they used the word centre of her care, and the family
“disgusting.”’ was included in the process. It
The following January, Mrs was amazing.’
Walker was taken to hospital for a
mental health assessment. Culturally competent
Faith refused to let her mum Last year, following pandemic
be assessed in a hospital unit restrictions on family visits, Mrs
that had cases of norovirus, so Walker was placed on an end of
Mrs Walker was transferred to life care plan. Faith and the family
a psychiatric hospital in nearby were allowed in, one at a time, to
Tonna, Neath. say goodbye.
To join our calls for a social care system that guarantees quality care and support,
visit alzheimers.org.uk/campaigns
24You can also read
