From the heart Empathy and respect - Bright ideas - Alzheimer's Society
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June/July 2021
Alzheimer’s Society’s magazine
Bright ideas
Early career researchers
Mary’s legacy
Reading project
Missing freedom
Hope to return
Also in this issue
Keep the pressure on
Better sleep
Helpful gadgets
From the heart
Empathy and respect
Welcome
I
t’s been said that lockdown meant everyone felt the kind of isolation and lack of
choice that too many people with dementia and carers experience every day. As we
find our ‘new normals’, how many people will remember what that was like?
Even at its height, lockdown’s impact on our lives varied greatly, and the differences
become more stark as restrictions lift. However in May, our Cure the Care System
campaign reminded the wider population what decades of unfairness and underinvestment
mean for people affected by dementia. With your help, we’ll be keeping social care on the
government’s agenda until we get the change that’s needed.
Of course, we’re also here to share how we can create change in our own lives and
communities today. The best place to see that is in people’s real-life experiences, and
our magazine is full as ever with the inspiring voices and stories of people living with
dementia, their carers, relatives and friends, and supporters who are campaigning and
fundraising. Our poetry competition is also still open for entries – until 30 June for poems
emailed to us (see p31).
Do continue to let us know your comments and ideas about the magazine, and remember
you can switch to the email version at alzheimers.org.uk/switch if that would work for you.
Danny Ratnaike, Magazine Editor
Questions
Need about
support? dementia?
We’re See
here for you p38.
– 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.
Subscribe, read, listen
Visit alzheimers.org.uk/subscribe or call 0330 333 0804 to receive each new magazine in the post.
Switch to the email version of the magazine at alzheimers.org.uk/switch
To get the magazine on audio CD or to update your subscription details, call 0330 333 0804
or email enquiries@alzheimers.org.uk
See alzheimers.org.uk/magazine for online articles, PDFs and podcasts.
£50 can go towards our Companion Calls, where volunteers phone people affected
by dementia to chat and check on their wellbeing. Please give what you can today.
Contents
News
Keep the pressure on 4
From the heart
Empathy and respect 8
‘I will do it’ 12
Walking sense 13
Try something new 13
Independent and secure 14
Meet the researcher: Laura Ashley 15
How I enjoy better sleep 16
Q&A: Gail Gregory 17
A brighter future 19
In your area 20
Spotlight: Sarah Weir 21
Missing freedom
Hope to return 22
8 Helen is France’s ‘rock’.
Bright ideas
Early career researchers 26
Mary’s legacy
Reading project 28
Letters 30
Helpful gadgets 32
Book group: Four Umbrellas 34
NHS funding decision 36
Wool crafts 37
Coping with changes 38
Competitions 39
22 Cherishing seeing Mum. 28 Inspired by Grandma.
Copyright ©2021 Alzheimer’s Society – please ask us if you’d like to copy our content or use it elsewhere.
3
News Keep the pressure on
In May, Dementia Action Week brought the need for social care reform
into sharp focus – we must now ensure that those in power keep their
promises and deliver the change that people affected by dementia so
desperately need.
Thank you to everyone who joined our calls for governments to cure
New rugby the care system – a system we know should provide quality social care
that is free and easy to access, no matter where you live.
research The recent relaxation of care home visiting restrictions during the
pandemic showed what can be achieved when we all make our voices
Former world-leading rugby heard, but we must do more to make sure people affected by dementia
players have joined an Alzheimer’s are prioritised.
Society-funded dementia You can help us keep the pressure on by sharing our social media posts and
prevention study, part of our contacting your elected representatives to tell them your social care story.
Sport United Against Dementia Visit alzheimers.org.uk/campaigns to help us end the injustice.
(SUAD) campaign.
Elite ex-players including
Shane Williams and Ben Kay will Join us for Memory Walk
take part in a new phase of the
UK and Ireland PREVENT study, Take part in a walk for a world without dementia with Memory Walk
called PREVENT:RFC. This will look this autumn.
at whether elite rugby players It’s a great chance for friends and family to come together for loved
show more early warning signs ones living with dementia and in memory of those we’ve lost, while
of dementia than the general raising money for vital dementia services and research.
population and, if so, why. We have 20 walks taking place across England, Wales and Northern
We’ve also provided funding Ireland in September and October, all of which will follow government
for an informal pilot study COVID-19 guidelines. Or if you prefer, you can walk your own route
involving football players, including on 19 September.
former England international Thank you to everyone who took part in their own March
Alan Shearer. Memory Walk – you’ve raised well over £1.4 million and counting!
Our SUAD campaign is uniting, Register for free at memorywalk.org.uk or call 0300 330 5452.
for the first time, the collective
power and reach of sport to
improve the lives of current and
former players and fans. SUAD
will raise vital funds towards
research like PREVENT and
crucial Society support for
people affected by dementia.
Senior figures across sport
and sports broadcasting have
joined the board of SUAD to
help generate significant funds
and awareness.
For more about SUAD visit
alzheimers.org.uk/SUAD
4
Our dementia heroes
Directions
M
ay’s Dementia Action Week
raised the profile of our
broken social care system.
As we know from many of you, the
system currently makes things worse,
not better. It is not helping you stay in
control of the challenges dementia
throws at you.
You tell us about poor and
inconsistent standards and quality
of care, lack of respite, complicated
forms and frightening assessments.
The social care system is often hard to
access and frequently doesn’t provide
the support that people affected by
dementia need to be able to carry on
with safe, independent lives.
If nothing else, the coronavirus
response across the UK has shown
what we can do when we pull together.
Now we need to turn that effort into
fixing the social care system.
To do that we need political will
and public pressure. Alzheimer’s
Society is leading the charge in
asking government why people
with dementia still haven’t got the
affordable, personalised care system
Winners at our 2021 Dementia Hero Awards included Paul Harvey, the
they were promised back at the last
80-year-old with Alzheimer’s whose piano composition inspired a
election. We will keep asking until we
£1 million donation to support people with dementia.
get the system you need and deserve.
The awards, held during Dementia Action Week and sponsored by
I never fail to be inspired by
Tunstall Healthcare, showcased the stories of people doing outstanding
the team of volunteers and staff
things during the pandemic.
at Alzheimer’s Society, their
Paul was named Dementia Hero for Outstanding Achievement,
determination to make a difference
the award for Care and Compassion went to Morcia Downer for her
every moment of every day. We know
support of her mum Sandy, and the award for Campaigning to Graeme
that dementia isn’t quitting anytime
McGrory. Other winners included care home charity Royal Star & Garter,
soon – so neither are we.
banking firm Santander UK and Alex Winstanley, whose intergenerational
reading project is featured on p28 of this issue of the magazine.
Kate Lee, Chief Executive Officer
Visit alzheimers.org.uk/dementiaheroawards to find out more about
@KateLeeCEO
all of the winners and watch the awards.
5
In the press: Staying active
Sleep and risk
Some media outlets recently
reported that not getting enough
sleep in middle age can increase
your risk of developing dementia.
Is this actually the case?
The headlines were based on
research at the University of Paris Alzheimer’s Society continues to
and UCL in London, using data support We Are Undefeatable, the
from a survey tracking the sleeping campaign that inspires people
habits of nearly 8,000 people since affected by dementia to lead more
the 1980s. About half of them active lives.
also had their sleep tracked by
an accelerometer, a device that
New catalogue: Whether it’s a short walk or
some chair-based movement,
measures movement. People who Helpful products staying active can increase a
slept six hours or less each night at person’s confidence, independence
age 50 were said to have a higher Our online shop’s new catalogue, and enjoyment, and bring other
risk of developing dementia over Helpful everyday products, is full health benefits. Over the summer
the next 25 years. of ideas to help people affected we’ll be sharing stories about how
Clare Jonas, Research by dementia. These include new people affected by dementia have
Communications Officer at simple phones and music players, overcome barriers to be more
Alzheimer’s Society, said, ‘This adaptive clothing and gardening active in a range of ways that
research is exciting because it tools. Also included is a new range work for them.
looks at people’s sleep habits of games and activities from The To find out more about
well before late-onset dementia Black Dementia Company, which We Are Undefeatable and
develops. It provides firmer have been designed for people with staying active, please visit
evidence than before that lack of African or Caribbean heritage. alzheimers.org.uk/active
sleep is a risk factor for dementia We make sure that our products
rather than an early symptom.
‘We still need to be cautious
are fit for purpose by having people
affected by dementia try them out Amazing
about these findings however,
as people answering surveys
and tell us what they think.
Visit shop.alzheimers.org.uk or call
volunteers
aren’t always aware of what 0300 124 0900 for a catalogue. During Volunteers’ Week, 1–7 June,
their true sleep patterns are. The we’re giving special recognition
accelerometer provides more to the contribution our volunteers
objective information, but so far
the researchers have only been Fantastic jewellery make to the lives of people affected
by dementia.
able to use that evidence to
assess the risk of dementia over
milestone Society volunteers have shown
incredible resilience, commitment
the following six years. We need Your donations of old jewellery over and dedication through a very
more research to fully understand the years have now raised over challenging year. We’re inviting them
what’s going on.’ £2 million! Our Old Jewellery Appeal to virtual Volunteers’ Week events,
Alzheimer’s Society helps has been running since 1986 and sharing their stories throughout
fund the UK Dementia Research welcomes unwanted jewellery, the organisation and launching a
Institute (UK DRI), which is exploring including broken items. dedicated helpline and online portal.
the role of sleep in dementia. To request a freepost donation Find out more about volunteering at
Read more about the UK DRI’s envelope, visit alzheimers.org.uk/ alzheimers.org.uk/volunteer or call
work at www.ukdri.ac.uk recycling or call 0330 333 0804. 0300 222 5706.
6
Have you had good Dementia-friendly Cupcake Day:
social care? banking Join the fun!
Alzheimer’s Society needs your People affected by dementia
help to influence the reform of have been working with Santander
social care. Our discussion paper, to make their services more
A future for personalised care, dementia friendly.
outlines how social care can A new campaign from
better meet the needs of people Santander, one of our corporate
with dementia, highlighting the partners, will encourage customers
importance of personalised care to tell their bank if they have
and social connections. dementia. Staff can then adapt how
We now want you to share they communicate and let them
your experiences of good social know about products and services
care, so that we can make further that could help.
recommendations to professionals People affected by dementia – Whether you’re a sprinkles lover or a
and policy makers. including a special steering group buttercream fiend, there’s still time
To share your positive and people from our Dementia to bake to make a difference this
experiences of social care, email Voice groups – have been central to Cupcake Day. This year’s event is on
policy@alzheimers.org.uk the campaign’s development. 17 June but you can host your day
whenever it suits you best.
Sign up for your delicious free
New trustees Children’s Cupcake Day fundraising kit at
alzheimers.org.uk/cupcake-day
We’re welcoming three new people puzzle pack
to Alzheimer’s Society’s Board
of Trustees – Susan Allen, Sube Brain Workout Junior is a fun and
Banerjee and Judi Rhys.
Susan is CEO of Retail and
exciting way for children aged six
to 11 to keep their brain active Don’t miss...
Business Banking at Santander while learning about dementia. In
UK, and her long-held interest in return for a one-off donation, you’ll Michael in Omagh, who has young-
diversity includes involvement in the receive a bumper pack of puzzles onset Alzheimer’s, looks forward to
Santander LGBT Network. – including activities relating to more ups and fewer downs. See p12.
Sube is Professor of Dementia dementia – and an exclusive Brain
at the University of Plymouth and Workout pencil straight to your door. Carole, in north Wales, took part
has an active interest in the role that To order Brain Workout Junior in Memory Walk to honour her
ethnicity and health play in the lives visit alzheimers.org.uk/ dad and help create a better
of older people. brainworkoutjunior or call tomorrow. See p13.
Judi is CEO of Tenovus Cancer 0330 333 0804.
Care and is passionate about Gail in Lancashire has Alzheimer’s,
bringing people from different and she’s creating new memories
communities and sectors together every single day. See p17
to find solutions.
Our trustees are all volunteers Meet Dan, Community Fundraiser in
who contribute their time and North-East England, and Sarah, one
expertise to make sure we are of our trustees. See p19 and p21.
meeting the needs of people
affected by dementia. Find out how the Society is investing
Find out more about our trustees at in the future of dementia research.
alzheimers.org.uk/trustees See p26.
77
From the heart
Photographs: Roger Donovan
Quick read
France Savarimuthu, who has dementia with
Parkinsonism, wants people with dementia to
be treated with empathy and respect.
Former nurse France, 71, lives in Newport,
south Wales with his wife Helen – also a former
nurse – who has been his ‘rock’.
The couple are grateful for the support they’ve
received from Alzheimer’s Society, which has included
help with housing and benefits.
France, who also has diabetes, bipolar disorder and
multiple system atrophy, says that people make
incorrect assumptions based on his appearance.
8
After a life spent
supporting others,
France Savarimuthu
now faces many
health challenges of
his own. Gareth Bracken
speaks to a man with
dementia calling for
more empathy and
understanding.
R
eflecting on his long France enjoyed singing and ‘When I got the dementia
career as a nurse playing the harmonium, and used diagnosis, I didn’t want to know
helping unwell and to perform at weddings. about it – I was in denial.’
vulnerable people, one moment in ‘I spoke French and English, France, who has run four
particular stands out for but my singing teacher said that I marathons in his life, says he
France Savarimuthu. had to learn Hindi, to put the correct has good and bad days. But
‘I was working a night shift feeling into the songs,’ he says. he feels his physical state is
supporting a patient with ‘I learned faster because I had a getting worse overall, including
learning disabilities who had purpose, and my singing got better.’ sometimes struggling to walk.
slipped in the hospital shower and France worked as a teacher Helen notes that his memory
become paralysed from the neck and then a pay clerk before sometimes isn’t good and that
down. I asked for extra staff to leaving Mauritius for Scotland, he can be up and down in the
help turn him, but was refused and age 23, having been offered a job night. France can also lack
told there was nothing wrong with as a nurse at a Glasgow hospital. awareness of what’s around
him. I felt so sorry for this man,’ he He went on to medical support him when out and about, and he
says. ‘The next morning a director roles at Glasgow Airport, British once needed surgery after being
wanted me to change my report, Steel, BP and the Govan shipyard. knocked down by a car.
but I refused, because it was the He later moved to Newport and France has bipolar disorder,
truth. I don’t like any injustice.’ oversaw a hostel that prepared diabetes and multiple system
This attitude remains core to people with learning disabilities to atrophy, a rare condition that
France, who lives with dementia return to their communities. can affect balance, movement
and wants people with the France, now 71, married fellow and basic functions such as
condition to be treated with the nurse Helen in 1983, and they breathing, digestion and bladder
respect and dignity they deserve. have one son. control. He was also in a coma
with pneumonia for a week and
Politics to nursing Diagnosis denial returned home unable to walk,
France lives in Newport, south France has a diagnosis of talk or feed himself.
Wales, but grew up in Mauritius, an dementia with Parkinsonism. ‘I thought I was dying at that
island country in the Indian Ocean. Parkinsonism is a term that time,’ says France, who received
He was interested in politics as a covers several conditions, support from external carers for
teenager, and in his early 20s was including Parkinson’s disease, with three years.
elected chairman of his village similar symptoms such as slow France currently takes
council, the youngest person in movement, rigidity and problems 22 tablets a day and says
Mauritius to hold such a position. with walking. medication ‘brought me back
‘The first time I voted, I voted ‘My writing went first. That was to life’. He’s also extremely grateful
for myself!’ says France, who also the first sign of Parkinsonism,’ says to Helen, not only for her support
recalls meeting Seewoosagur France. ‘Then one day I took a walk with his health conditions, but
Ramgoolam, the first Prime and my legs were giving way. I had also for fighting his corner with
Minister of Mauritius. to be in a wheelchair. healthcare professionals.
9
‘My wife has been a rock to me ‘I would advise people to have him in a person-centred way.
– I know I can rely on her,’ he says. ‘I the vaccine. It’s better to have However, the couple
don’t know what I would have done it than not,’ says France, who also underline the positive
without her.’ remains cautious. experiences they’ve had with
‘Some people are still not healthcare professionals.
Not over yet wearing masks and don’t care,
France was only diagnosed with but we’re taking care of ourselves Exactly the same
dementia after a psychiatrist and making sure no one else France hopes that sharing his
assessed him over a few weeks. gets it, because it’s not over story will help change people’s
Previously, some healthcare yet,’ he says. misconceptions and attitudes
professionals had doubted he about dementia.
had dementia, because he didn’t Kindness and support ‘People think about dementia
come across in a certain way in France and Helen have received and they think about old people,’
conversation and was able to valuable support from Alzheimer’s he says. ‘Some people aren’t
complete the tasks they set him. Society, including help dealing with dementia friendly.’
France admits that he was a housing association and getting He is also keen to underline
able to mask his dementia during benefits. France also enjoys his the importance of not making
some appointments. weekly ‘chat and a laugh’ with assumptions about people.
‘I knew what the medical people Barry, a volunteer who met up with ‘Sometimes I go to a shop
were going to ask, so I could hide him in person before lockdown. in my wheelchair and people talk
it,’ he says. ‘But there’s no point ‘All I have is praise for to my wife and ignore me,’ he
doing that, you have to accept it Alzheimer’s Society – it’s coming says. ‘Or sometimes people see
and be treated.’ from my heart,’ says France. my colour and assume I can’t
France loves spending time France and Helen are also speak English.’
in the garden and says his current involved with Dementia Voice, For France, it all comes back
quality of life ‘isn’t too bad’, where people affected by to empathy and understanding.
though less exercise during the dementia use their personal ‘I always used to think, if I was
pandemic has led to him losing experiences to help shape in one of my patient’s shoes,
strength in his legs. what the Society and other how would I feel?’ he says. ‘People
‘We were self-isolating for five organisations do. They have with learning disabilities are
or six months – it feels like you’re spoken to newly qualified doctors human beings with feelings,
in prison,’ he says. ‘I followed about what it’s like to live with don’t treat them as stupid. It’s
politics, read my newspapers and dementia and how people with the exactly the same with people
listened to music. It was OK but it condition should be treated. with dementia.’
wasn’t normal.’ ‘It’s rewarding – I see people
France and Helen found it taking notes,’ says France, who
particularly frustrating to be apart has also given talks to the Welsh
from their young granddaughter, Ambulance Service.
who they recently saw for the A few years ago, France and
first time in nearly a year. ‘She’s Helen shared their experiences
our little darling, lovely she was,’ with a group of Members of
says France. ‘It was joy.’ the Senedd holding an inquiry
France and Helen were also into hospital care in Wales. This
both pleased to have their second included a story about a nurse who
COVID vaccination. angered France by not supporting
For dementia support, visit Use our Dementia Directory to find
alzheimers.org.uk/get-support dementia services near you – see
or call 0333 150 3456. alzheimers.org.uk/dementiadirectory
10What can you
do to help?
You can ensure that
more people with
dementia receive
the same support
and opportunities as
France. Please give
what you can today.
11‘I will do it’
Michael Keenan in Omagh, aged 61 and living with young-onset Alzheimer’s,
looks forward to more ups and fewer downs.
the cause. Even during the
pandemic, we were able to visit
Stormont and the MLAs came out
and met us. They were breaking
their necks to get a photo with us –
good PR for them! But there was a
sincerity from them that I liked.
We’re getting there. I’ve got
more campaigning to look forward
to, which I relish.
Michael with (left)
Great to wake up
Bernadine McCrory, I’m diabetic and I was very
the Society’s Country positive about getting the vaccine.
Director for Northern Maybe we’ve got something to
Ireland, and Paula look forward to, if this can all
Bradley, MLA for ease off a wee bit. In truth, I’m
Belfast North. apprehensive about mixing with
people again. But I think things
T
will be very interesting as to
here have been an awful lot Getting there what’s going to happen.
of ups and downs in the last I’m a steering group member for I make the most of life, take
year, probably more downs. 3NDWG, the 3 Nations Dementia what it gives you. I enjoy life to
You’ve been very curtailed in what Working Group. I was spending the full. I have the wee dark days,
you can and can’t do. There’s very quite a lot of time travelling back but when I’m on top form, which
little physical approach with people. and forth to meetings before. I am most of the time, it’s great
You get used to it being the norm, I like the 3NDWG meetings, to wake up in the morning,
but it’s not a very nice norm. because I feel I’m with friends, Alzheimer’s or not.
I live on my own, though I’m and we seem to have achieved I’ve been dealt the hand
blessed with a close and good something. And you’re living the I’ve been dealt, but if I can do
family. I love being around people. same experiences as others, anything to promote what
I would’ve been visiting my sister ups or downs – it doesn’t always Alzheimer’s Society does,
and her grandkids – that stopped. have to be good news. I will do it.
Before the pandemic, there Alzheimer’s Society has been
wasn’t much time to think. Then an awful lot of help to me. I used to
there was too much time to think. do the talks, it was exhilarating. I’d
I’m usually a glass half full man, but talk about dementia to teenagers
this last year it’s been more glass half at schools and universities, they
empty. I call it feeling sorry for myself, took it in like sponges. They’re
but we’re all allowed a bit of that. the people you need to get the
It’s a dangerous way when you message out to. It’s organised
get yourself down, so if you’ve got a through James Erskine in the
contact, talk to them. Spill your heart Dementia Voice team – he’s very
out – it seems that you can unload hands on.
your problems and your day becomes We met the DUP and Sinn Féin
so much better. I’ve done it. before the pandemic, promoting
12Try something new
Take on a Trek26
Walking sense
For Carole Beavis in north Wales, apart from being a
fitting way to honour her father, Memory Walk is also
about a better tomorrow.
much rooted in the day to day – Take on a 13 or 26 mile trek this
crisis points – but I’m contributing summer, in one of five stunning
to better things in the future. locations. You’ll trek with others
It’s been an awful year, with who’ve experienced how tough
dementia and deaths in the family. dementia can be. Walk past the
There’s been very little to hang on beautiful Ullswater lake or scale
to. It’s been important for me to Pen-Y-Fan in the Brecon Beacons
know I’m doing something useful and get a well-deserved medal and
and practical. glass of bubbly at the finish line.
Sign up at alzheimers.org.uk/trek26
Different for others or call 0330 333 0804.
The walk was lovely. I was wearing
a Memory Walk T-shirt and the
name of who I was walking for. Learn online
People smiled and nodded and
acknowledged me. with Dementia
I was thinking about loads of
stuff to do with Dad. At the end, it Carers Count
was really emotional to think that he Friends and relatives of people
M
won’t ever come here again. But it who have dementia can get help to
y dad, Alan, is 86 and was also almost accepting that this develop strategies that support their
has Alzheimer’s and is where we are – we have to make it wellbeing from charity Dementia
vascular dementia. He as good as possible for our children Carers Count. Take part in Live Online
was diagnosed in 2011 and lives in and grandchildren. Learning, designed and delivered
a care home now. We used to go And a lovely thing happened. by experts, watch videos and read
for walks together, it was a key part Some friends pulled up in the car advice on a range of useful subjects.
of our relationship. It was a place and handed me some pink gin and See dementiacarers.org.uk
where we connected. tonic, and chocolate! At the end, my
Dad used to be in the merchant husband met me and we sat looking
navy, and the last place I walked with at the sea. I raised over £1,500 –
him was Barmouth Sailors’ Institute, I was astounded by the support.
which is 10 miles from home in I did it because I want things to
Llandanwg. It made complete sense be different for other people. My
Become a
to walk there for Memory Walk. dad was so frightened about having
dementia. He wouldn’t tell anyone or
In my corner
Alzheimer’s Society has been a
engage with services. His life could
have been so much better if he
Dementia Friend
lifeline for me, it’s constantly been didn’t feel so ashamed. I hope that Dementia Friends learn about
in my corner. The helpline gave other people will feel less bad about dementia so they can help their
emotional and practical support, getting help. community. You can become a
and I connected with other people Dementia Friend by taking part
through Talking Point. Memory Walk is back this in an online session, and also by
Even when things were very hard autumn – find out more at watching our online videos.
and horrible, fundraising made me alzheimers.org.uk/memorywalk Visit dementiafriends.org.uk
look forwards. For me, you’re very or call 0300 330 5452. to get involved.
13Independent and secure
Jayne Sibley in Southampton tells us how her parents’ dementia inspired a new
debit card and phone app to help people safely manage their everyday spending.
My mum is a kind-hearted, independent whilst keeping their
generous lady, but there was no money safe and secure.
way she could sustain this level Alzheimer’s Society’s
of spending and giving. investment in Sibstar, through
We tried everything to protect its Accelerator Programme,
Mum’s everyday spending while has been invaluable. It’s enabling
keeping her independence. We us to get it to market more quickly.
asked the bank to set withdrawal The card has a monthly
and spend limits on her card. We subscription fee of £4.99, and
scratched out the code on the people can register now to be one
back of her card, but she’d lose of the first to try it out.
it and the bank would send her a
Jayne and her mum. new one. Taking away her cheque To find out more about Sibstar and
M
book and going cash only was a register, visit www.sibstar.co.uk
y dad was diagnosed complete disaster.
with Alzheimer’s disease This all resulted in us having
and vascular dementia to take away her access to her
in 2011, and seven years later own money, which immediately
my mum was diagnosed with led to a decline in her condition.
Alzheimer’s. There have been We needed a way to keep Mum
lots of challenges, but by far the financially independent but
hardest has been keeping my financially secure as well, and
parents’ day-to-day spending that’s where the idea for Sibstar
under control and secure. came from.
To help solve this, with support
from Alzheimer’s Society, we’ve Secure card
launched Sibstar – a debit card Sibstar is a highly secure debit card
and app that other people affected and app for people with dementia
by dementia and facing the same and their families. The person with
challenge as us can soon benefit dementia has the Sibstar card,
from as well. which acts like any other debit card.
The person supporting them has
Unsustainable spending the Sibstar app on their phone, and
As Mum’s condition progressed, together they decide how and where
she started spending more on the card can be used.
groceries than I did, and I’ve got a You can set daily spending limits,
family of four! She made countless switch cashpoint or online payments
cashpoint withdrawals, writing on or off, and freeze and unfreeze
cheques to charities and taking the card. You can also receive spend
out duplicate insurance policies notifications. This can all be changed
on the washing machine. She was at any time, so you can adapt how
really vulnerable to phone and you use Sibstar as the person’s
doorstep salespeople. dementia changes. We aim to
And then she started giving provide people who have dementia
away cash to homeless people. with a way to remain financially
14Meet the researcher:
Laura Ashley
Reader in Health Psychology at Leeds Beckett University.
Favourite things? What are you currently
Books – The tipping point and working on?
Outliers, by Malcolm Gladwell. We have just finished a study
Way to spend time – With my two looking at ways that hospital
young children and, when cancer departments can improve
they’re in bed, with a gin. care for people with dementia.
Memory – Finding out our IVF We now want to work with
treatment to have our children managers and clinicians to see
had ‘worked’. how ideas from our research could
be implemented in practice.
Why dementia research?
Since my PhD I’ve worked in cancer In what direction would you
research, but this has come to like to take your research in
include people with dementia. future?
One in two people will develop Our work has focused on
cancer in their lifetime, mostly hospital-based cancer care,
when they’re older, and many but we know many people with
cancers are now curable or dementia do not receive anti-cancer
treatable as a long-term condition. treatments. We would like to
As a result, many people who extend our work to consider how
now develop and live with cancer GPs can support people affected
already have dementia. Compared by dementia to make decisions
to other cancer patients, people a cancer-specific area of Talking about cancer treatments and
with dementia are more likely to Point, the Society’s online manage cancer symptoms.
have their cancer diagnosed at community. In this area, people
a later stage, or not at all. They with dementia and their carers can
also tend to receive less cancer ask and reply to questions about
treatment, suffer more treatment dealing with cancer when someone
complications and have their cancer also has dementia.
pain less well managed. They can take part in live Q&A What can you
sessions with specialist health care do to help?
How has Alzheimer’s Society professionals, and they can read
supported your work? Q&As that have already taken place.
Your donation funds
We’ve found that people who For example, one was with the UK’s increasingly important
support relatives or friends with only dementia nurse employed in a research, only possible
both dementia and cancer find it cancer centre, who supports people with your help.
emotionally and practically difficult with dementia and their families
to manage the two conditions. through making decisions about and
Please give what you
There’s a lack of information and undergoing cancer treatment. can today.
peer support tailored to their You can find the ‘Caring for a
specific situation – dealing with person with dementia and cancer’
cancer alongside dementia. area in the ‘I care for a person with
Based on this, we worked with dementia’ forum of Talking Point –
Alzheimer’s Society to establish visit alzheimers.org.uk/talkingpoint
15How I enjoy better sleep
We ask people about how they keep active and well, whether they have
dementia or not. This issue, we hear about improving rest and sleep.
Grannie G on Talking Point, lunchtime I am ready to drop so I more. I’ve cut out almost all alcohol,
79 in Kent go to bed and set an alarm for an only have about one drink a week,
I try to get hour. This enables me to cope with and no caffeine at all. Less high-
some fresh air the rest of the day. sugar foods and certainly not
and exercise When I switch out the light, I after mid-afternoon. I sleep with
during the day. try to remember (and thank God socks on and take HRT. I was
I don’t have any for) three good things that have sleeping less well as I got older
coffee later happened in the day, then I count and understanding more how
than lunchtime. my breaths until I fall asleep. important sleep is to your health.
I fall asleep to the radio set on a Sleeping well means I’m more
timer so it switches off after Ray Dernie, 79 in alert and generally feeling good.
45 minutes. Either Classic Nottinghamshire
FM or local radio. I go to bed at approximately the
If I don’t sleep well at night I same time each day and have
tend to nap during the day, and this six to eight hours sleep. I have
leads to a bad practice which is always done this, no special
difficult to break. arrangements. I live alone and
If I’m awake in the early hours have a comfortable bed.
I feel more isolated, the only
one in the world who is awake. Chyanne Hooks, 24 in Essex
I know this is not true but it does I have set
have that effect. I feel much bedtime and
happier psychologically if I get an wake-up
undisturbed night’s sleep even if times, with a
it’s only six hours, and do feel more wind-down/
energetic during the day. wake-up Some things, like age and
routine. I was genes, affect your chance
dbrilyant on Talking Point, 75 diagnosed with chronic fatigue of developing dementia but
with Alzheimer’s in Somerset syndrome when I was 17. you can’t change them.
I am five More recently, my diagnosis
years from was changed to coeliac diseases, Things you could do include
diagnosis and with an underactive thyroid. keeping your mind and body
am sleeping I sometimes have to take a nap active, enjoying healthier
ever more during the day for 45–90 mins. food, not smoking, drinking
in the day. I alternate between active days less alcohol, staying in touch
Coping with and rest days. I know if I don’t with people, and dealing
life takes longer and is much more stick to my routines, my energy with any health problems.
tiring than it used to be. I try to levels will suffer. I am a lot more
sleep, eat and go to the loo by aware of the way I feel and have If you already have dementia,
the clock. learnt to accept that I need to rest the same things can help
I am very physically active, so more than others in order to be you to stay well.
get sleepy. If I wake before 3.30am able to function.
I take melatonin and if I wake Visit www.nhs.uk/livewell for
after that time I take a very mild Jo Cooling, 52 in Wiltshire wellness advice for everyone.
sedative to give me a little extra I stop eating at least two hours
sleep. I avoid getting over-tired. By before going to bed, preferably
16Q&A: Gail Gregory
Gail Gregory in Lancashire, aged 56 with young-onset Alzheimer’s disease.
What’s changed most since Read Gail’s blog at
your diagnosis? www.dementiaalzheimers.home.blog
The biggest thing that’s changed and hear her diary entries at
is me. I now have a more positive www.dementiadiaries.org
outlook on life. And because
I’m positive about things, I love If you have dementia and would
to share things with others to like to answer our questions for
show people that we can still do a future column, email
things when we have dementia. magazine@alzheimers.org.uk
We can still learn new skills. It’s a
whole new chapter – I call it my
dementia chapter.
What would you take to your
desert island?
I did think at first my mobile
phone, if it worked off solar power, me very active because he gets
because there’s all sorts on it – me out every day and walking in
photos, poems, lots of memories the fresh air, which is good for my
on there. mental wellbeing as well.
If not an electrical item, I’d
take my watercolours. It’s If you could go back in time,
something I’ve picked up over where would you go?
lockdown, I’d never done it My wedding day. Everyone that was
before. I could then paint the at my wedding meant a lot to me, it
scenery around me, the flowers was everybody that we loved and
and the plants, and that would wanted there because it was only
be my memory of being on a a small wedding. We’ve lost people
desert island. now that was there, so it would be
nice to go back and spend some
What song or tune sums up time with them again.
your life so far?
Fight song by Rachel Platten, What is your most treasured
because it’s a very positive sort possession?
of a song. Throughout the song, If you’d have asked me this about 10
she’s fighting for things all the years ago, I would have said my car.
time and wanting to achieve and But now, my whole perspective on
wanting to get there. I’ve always things has changed and the most
been one that’s had to fight to important thing for me is my camera.
keep going – more so now! Every single day I’m creating
new memories. I’ve been out this
What single thing improves morning for an hour and a half,
your quality of life? just sitting and snapping the birds
This has got to be my dog Toby, flying past. I might forget next
who is my four-legged pal. He’s week where I was, but I can look
always at the side of me when I’m back at the photos and I’ve got the
not feeling well, and he also keeps wonderful memories.
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 there is someone who
similar situation and search for local support services
on our dementia directory. understands. I don’t
Face to face support
feel alone now.’
Face to face support services are not currently running Person living with dementia
due to coronavirus. When it’s safe, our dementia
advisers will connect you to the relevant support in your
area, from one-to-one services to local support groups.
Contact us today
0333 150 3456
alzheimers.org.uk/getsupport
alzheimers.org.uk/getsupport
18
Registered charity No. 296645 19594SDA brighter future
Dan Nelson, Community Fundraiser in North-East England, is looking ahead after
a challenging year.
G
radually, restrictions
are easing and we are
looking forward to
getting out more and meeting
our supporters again. It’s been
a difficult year for everyone,
and community fundraising is
no exception.
I’d been in post for one fun
and successful year before
the pandemic – the North East
was buzzing with fundraising
for Alzheimer’s Society! We
have four active voluntary
fundraising groups and I’d built
strong relationships with local
businesses, with good leads for
potential new partnerships.
Events and campaigns like
the Great North Run, Memory Dan with colleague Annie Osborne on Elf Day.
Walk, Cupcake Day and Elf Day
galvanised our region and really
brought everyone together. I have had to adapt to working and dementia-friendly
Then COVID hit and it all from home permanently and all communities to form a new
stopped overnight. Community that brings, including just not fundraising powerhouse – the
groups could not host their moving enough and making Regional Engagement team.
annual ball or ladies’ night, sure I go for walks to avoid The future’s looking brighter
businesses were empty and back pain and Zoom fatigue. and I’m super proud to have lived
the energies that drive Charity I’ve had personal challenges, as through this remarkable period of
of the Year partnerships had to everyone will have in one way history with Alzheimer’s Society.
be used elsewhere. or another. My two-year old We’re determined to raise the
We immediately began daughter spent months at funds necessary to be there for
promoting our emergency home with myself and my wife people affected by dementia when
appeal to all our partners and (who also has a very demanding they need us the most.
throughout our networks. As full-time job) and became a
colleagues went on furlough, regular feature on team meetings, For ideas about how to raise
I was thanking and keeping in including screaming for attention funds in your local area, see
touch with more supporters in the background! alzheimers.org.uk/fundraise
than I normally would. I started But there are positives too. or call 0330 333 0804.
making an extra 50 calls a week I have always felt very well
to people involved in events supported by my colleagues
like Cupcake Day. Even now, I’m and seeing each other in our
speaking to supporters I’d never homes has really bonded us
have had contact with before – together. As our team has
people taking on treks or asking evolved, we’ve integrated what we
about leaving a gift in their will. do with Dementia Friends
19In your area
Awesome walks
A tour guide is donating proceeds
from walking tours starting
at Whiteabbey, on the County
Antrim shore of Belfast Lough, to
Forever in
Alzheimer’s Society. blue jeans
Declan Boyle, an accredited
green badge tour guide in
Hairing it A fundraiser in West Yorkshire has
Newtownabbey, is offering two- A team of hairdressers in Wrexham teamed up with a local singer for
and-a-half hour walks from put down their scissors and took this year’s Denim for Dementia
Whiteabbey village to the nearby up their trainers in a recent running campaign, encouraging workplaces,
fortified 16th century White challenge, smashing their own schools and care home staff
House, which he says feature targets by raising over £2,000 for to dress in denim to add to the
‘tainted wealth, a flighty lady, “Dick Alzheimer’s Society. thousands she’s already raised for
Whittington” and a Hollywood film Tonisha Williams, Kelly Castell Alzheimer’s Society.
star amongst many others’. and Fiona Cupit from The Hair Faye Mitchell in Pudsey, who
‘I want to use my skills as a tour Lounge in Rossett, joined by Fiona’s raised over £50,000 in the previous
guide to help make a difference,’ daughter Bella, began by taking on two years, was joined by Clare
Declan told local press. ‘It’s great a Couch to 5k programme. Training Brooke singing Neil Diamond’s 1979
to think that I will be raising funds during January and February, they hit Forever in Blue Jeans for a heart-
to help support people living with decided to run 50 miles in 30 days warming video to promote the 2021
dementia now and to fund research as part of Run for Dementia, which event (search ‘Denim for Dementia’
to one day find a cure for dementia.’ they completed on 27 March. on YouTube).
Covering around 3.5 miles, the ‘The past few months have been ‘We’ve tried to add a bit of
tours are carried out in accordance tough for everyone,’ said Kelly, ‘but humour to the video,’ said Faye,
with social distancing guidelines, coronavirus has really hit those ‘but also include information and
enabled by a wireless audio system. affected by dementia. images that show how big an issue
Jenay McCartan, Community ‘We know it’s a difficult time dementia is.
Fundraiser, said, ‘People affected by for lots of people financially, so ‘The idea behind the campaign
dementia need us now more than every bit of support spurred us is simple – we’re asking people to
ever, but the pandemic has hit us hard on further.’ wear denim and make a donation to
financially, despite an unprecedented Helen Marchant, Community Alzheimer’s Society.’
demand for our services. Fundraiser, said, ‘We are so grateful After her mother Carol’s
‘We’re in awe of supporters for the support of Tonisha, Kelly, diagnosis with Alzheimer’s aged only
like Declan whose dedication to Fiona and Bella. Every day, we work 64, Faye said she began fundraising
fundraising for Alzheimer’s Society tirelessly to find new treatments for the Society as a way to turn her
ensures we’re able to support and, ultimately, a cure for dementia. ‘anger into positivity’.
those who need it most during this Their efforts and donations will help You can take part in Denim
difficult period.’ us to continue to provide expert for Dementia whenever you
Find out more at information, training, and support like – see alzheimers.org.uk/
www.tinytours.com/activities/ services to all those who need our denimfordementia or
whiteabbey-walking-tour help. Diolch yn fawr!’ call 0330 333 0804.
20Spotlight:
Sarah Weir, Trustee
Why dementia, why Sarah (left) with her develop it. It is a skill which has
the Society? partner Louise. helped me in making Companion
My father and mother both lived Calls over the last year, as well as
and died with dementia, and I saw my day-to-day life.
first hand the deep, profound and
lasting impact it had on them, on Most looking forward to?
me and on our family. I couldn’t not A new pair of lungs – I’m on the
get involved in order to help change waiting list for a transplant.
that situation for others. Not having to shield, sanitise
everything and put all items into
How to fill an unexpected quarantine before opening them.
day off? Watching the government actually
After over a year of lockdown and act on its pledge to prioritise and
shielding, I’ll let my imagination fund social care.
go far and wide. The day would
start with my partner in Cornwall,
followed by a trip around the UK on
bikes, trains, canal boats and our
own two feet.
We’d take in majestic landscapes, this was a terrible, wrong or crazy
delicious food and copious amounts move. Whilst this always made me
of art and music, with enough quail, it also made me think that
conversation to build memories sometimes people give that
for years to come. No pictures advice because they wouldn’t
would be needed. We’d end the want to do it. So I kept calm and
day in a luxurious treehouse in the carried on, worked with brilliant
Highlands. Then, as if by magic, teams and together we created
we’d be back in our own house the some interesting footprints to
next morning, reinvigorated and leave behind.
ready for anything.
Biggest priority for coming
Proudest achievement? months?
Personally, my civil partnership Ensuring that, as the world learns
and our 28-year relationship. to live with COVID-19, the Society’s
Professionally, my BA and Honorary new strategy meaningfully
Fellowship from Birkbeck, impacts the lives of people
my Honorary Doctorate from affected by dementia, in ways
University of the Arts, and an OBE that work for them.
from the Queen.
Most important thing
Worst advice you’ve learned from a person with
been given? dementia?
Over my career, I moved from Patience. This probably wasn’t
the City to the arts, visual arts to a strength of mine, but after
theatre, heritage to design, large spending a decade with my father
scale to small. Each time, without and then my mother living with
fail, someone advised me that dementia, I found and tried to
21Quick read
As pandemic restrictions are eased, Jamie
Greaves can’t wait for care home visits to return
to normal.
Jamie is delighted that he can again visit his
mum Patricia, who has dementia, though the
number of visits is still limited.
When normal visits were stopped because of the
pandemic, attempts at video calls, window visits
and pod visits were all unsuccessful.
Patricia was diagnosed with frontotemporal
dementia and bipolar disorder in December 2018
after personality and behaviour changes.
22Missing freedom
After a year’s separation from his mum, the return of face-to-face care home visits
means the world to Jamie Greaves. Gareth Bracken speaks to a son cherishing every
moment shared.
‘I
was in full PPE and met by Sketchy diagnosis ‘It was devastating for Mum –
someone in a hazmat suit – it Patricia always loved the sunshine she just kept asking where he
was like a science fiction film,’ and around 10 years ago moved was,’ says Jamie.
says Jamie Greaves, recalling his to Tenerife with her partner. Some
first ‘window visit’ to his mum’s years later, it started to become Completely hysterical
care home during the pandemic. clear that something wasn’t right Jamie got social services involved,
‘She recognised me but became with her health. who said that Patricia needed to go
hysterical and wanted to climb out, ‘She would repeat herself to a dementia assessment unit.
so had to be restrained by staff. It in emails, or phone me twice in ‘That was one of the hardest
was actually quite horrendous.’ three minutes, not realising we’d things I’ve ever done,’ says Jamie.
Like so many carers, friends already spoken,’ says Jamie. ‘Her ‘I was told to get Mum chatting to
and relatives, Jamie has found friends said she came back from staff and then edge out through
it incredibly upsetting to be a restaurant and got plates out to a side door. It was very upsetting,
denied proper visits to a loved start cooking a meal.’ although also a relief to get her
one with dementia. After what Jamie describes as properly assessed.’
‘My mum is my world, she a ‘sketchy’ diagnosis of Alzheimer’s A later visit from Jamie proved
brings a great deal of joy to my life,’ disease in Tenerife, Patricia and distressing for both of them.
he says. ‘I felt so guilty to suddenly her partner moved back to the ‘Mum freaked out and was
stop visiting.’ UK to live in Stoke-on-Trent, to get completely hysterical,’ he says.
With visits still restricted, Jamie a proper diagnosis and further ‘She was kicking out at staff and
continues to call for change. support. But having struggled to screaming at me that I’d put her
‘I want it to go back to an open- come to terms with how there and didn’t love her. I broke down
door policy. Care home residents dementia was affecting Patricia’s in tears, which was when she
aren’t prisoners,’ he says. behaviour, her partner walked out. snapped out of it and calmed down.’
Starring role
Jamie’s mum Patricia, now 73,
spent much of her working life as
a secretary or PA for managing
directors of large companies. She
later moved into bookkeeping and
her own CV-writing business. She
was also involved with local singing
and drama groups.
‘She was always taking the
starring role!’ says Jamie, a
freelance creative consultant who
lives in Brighton. ‘She was very lively,
social and active.’
Jamie is an only child who was
born after Patricia had already
experienced a series of miscarriages,
and the pair have always been close.
‘There wouldn’t be a day without
some sort of contact,’ he says.
23Patricia was ‘sectioned’ – home companies have tended to However, Jamie’s test said he
detained under the Mental Health be overly cautious. had a slightly increased chance
Act. She spent 10 weeks on a ‘I think that people’s deterioration of developing Alzheimer’s and he
hospital psychiatric ward, where during lockdown has been worse adds, ‘It does make me think about
she was diagnosed in December than the risk of COVID in some the future.’
2018 with frontotemporal dementia respects,’ he says. Being a single gay man with no
(FTD) and bipolar disorder. Jamie helped to raise children or siblings has an impact
FTD is a less common type of awareness of the importance on what this would mean too.
dementia that can cause changes of proper visits on social media, ‘I don’t see much visibility of
to a person’s personality and writing to his MP and also sharing support for LGBTQ people with
behaviour, and difficulties with his experiences in support of an dementia or their family members
language. Bipolar disorder is a Alzheimer’s Society campaign. and partners. It would be nice
mental health condition that can ‘I think there was a period to see care homes catering
cause someone’s mood to swing where the government weren’t specifically for this demographic,
from one extreme to the other. fully understanding the magnitude especially as gay people may be
of the situation,’ he says. more likely to be left without a
Caged lion partner or family to care for them.’
Patricia went to live in a specialist Future risk
nursing home in Stoke for people Jamie’s grandmother also had Cherished moments
with dementia, with Jamie visiting dementia, and that prompted him Jamie can now visit his mum
every weekend from Brighton. to try a self-testing DNA kit. The once a week if he takes a COVID
However, Patricia would become Society doesn’t recommend these test beforehand and wears PPE.
very upset when he wasn’t around, kits, because they aren’t as reliable ‘It’s still not ideal, but it’s
so in mid-2019 Jamie moved her to as tests done by the NHS and it can noticeably better,’ he says. ‘It
a home near him. be easy to misunderstand what the seems odd to say, but after the
‘I was there most days and results mean without personalised year we’ve had, even being able
would take her out on the seafront advice from a professional. to visit for 30 minutes meant the
“
or to the shops or pub,’ he says. ‘I world. Seeing her face light up is
would do her nails and hair – she worth a million dollars to me.’
loved that. There were still some Patricia has had both doses
separation issues but overall it of the COVID vaccine and Jamie
worked really well.’ She couldn’t is now waiting for the frequency
Then came the pandemic, and and flexibility of pre-pandemic
Jamie was no longer allowed to be understand visits to return.
with his mum. ‘I miss that freedom of longer
‘I was devastated,’ he says. ‘She about the visits. Mum gets quite sleepy
couldn’t understand about the now and sometimes struggles
pandemic or that I wasn’t allowed pandemic or to talk, so when she’s animated
to visit, so it was a horrendous and chatty I want to make the
time and very upsetting. that I wasn’t most of it,’ he says.
‘I lost many nights’ sleep And as Jamie reflects on a
thinking about it, and as it went on allowed to visit, ‘horrendous’ year, the importance
the frustration built and built.’ and value of his visits are as great
Patricia found video calls so it was a as ever.
confusing and window visits ‘You’ve got to cherish
distressing, while pod visits were horrendous moments with the people
also unsuccessful. that you love, because you don’t
‘She was behind a pane of glass time and very know how dramatically things
but wouldn’t settle,’ says Jamie. can change from one moment
upsetting.
”
‘She was like a caged lion, trying to to the next.’
find a way out to be where I was.’
Although Jamie found
the home’s manager to be
understanding, in his opinion, care
24You can also read
