Living

Alzheimers Societys magazine

April/May 2016

with dementia
5 Dementia Awareness Week
What would you say?

Regulars
Book group
Consumer panel
Your answers
Ask an expert

Saving Oldwell
Success for local campaigners

8 A fighting chance
Home support 18 Making the team
Organising care 22 Game on
Active together
What do you want to say to Dementia?
Help us confront dementia this Whatever you want to say to Dementia,
Dementia Awareness Week by sharing Alzheimers Society is here to help.
your experiences, feelings or concerns.
To get involved visit
alzheimers.org.uk/DAW

#DAW2016
Welcome
Thank you to everyone who emails and writes with comments and ideas for the magazine. Please continue to let
us know what you think, whether youre somebody affected by dementia, a Society volunteer, Dementia Friends
Champion or one of our other wonderful supporters.
Were especially grateful to the many local groups who provide valuable feedback about the magazine. In
recent months, these have included Coffee and Comments in Salford, Worthing Town Criers, The Leadership Group
in Cornwall, A League of Minds in Hertfordshire, Dementia Happiness in Poole, Clacton Forget Me Nots and service
user review panels in South Tyneside, South Gloucestershire, Peterborough and south east Wales thank you all!
Danny Ratnaike, Editor magazine@alzheimers.org.uk 020 7264 2667

4 Dementia-friendly UK
Need for progress 8 A fighting chance
Home support
12
Society
Carers together
Dementia-friendly churches
Try something new
Change the world
Dispelling myths
Calling all photographers
In your area

24Saving Oldwell
18
Successful campaign
Making the team
Organising care

22Game on
Active together

26
Letters
Later stages of dementia
Spring greens
Key fobs and finders
Sundowning
Someone elses bills
Book group
Life with Ma
Q&A
Competition

alzheimers.org.uk/magazine Living with dementia 3

 Directions
News
Dementia-friendly UK
All too often everyday life is
made that much more
difficult because people with
dementia and carers dont
feel in control. It can seem like
dementia has taken over and
nothing can be done.
When even getting a
proper diagnosis can be such
a struggle, its easy to see why
people may feel disempowered.
We must also remember the
third of people with dementia
who never get a diagnosis at all.
Much has changed and
continues to improve. Many
people who have the support
of an Alzheimers Society
dementia advisor or dementia
support worker no longer feel
isolated or despairing. A lot of
people have found the Carer
Information and Support
Programme (CrISP) and
our other support for carers
transformational.
However, we need to reach Alzheimers Society has applauded the governments plans to make the
out to more people, and thats UK the worlds most dementia-friendly society by 2020, but underlined
why Dementia Awareness the huge need for further progress in diagnosis, care and research.
Week this May is so important. Jeremy Hughes, Chief Executive Officer, said, There are far too
It also means that we are many people with dementia in the UK who are not getting the care they
not hesitant in asking every need in order to lead dignified and meaningful lives, both of which are
reader to please send us a entirely possible.
donation if you are able to Some are acutely lonely, and others find themselves marooned in
see alzheimers.org.uk/donate or hospital following an emergency admission as there is nowhere suitable
call 0330 333 0804 (local rate). for them to go once their treatment has finished.
This will help us reach more Among its plans for England, announced in March, the government
people who want to beat will pilot increased information about dementia in health checks for
dementia in what can be a people aged over 40. Care Quality Commission inspections of services will
daily struggle to feel in include dementia care standards, and clinical commissioning groups will
control, as well as fund publish ratings of the quality of dementia care in their area.
research into better care and By 2020, the government says that all patients receiving high dependency
ultimately a cure. hospital care in England will also be seen by a consultant twice a day.
Thank you to everyone who In addition to 150 million in funding for a national Dementia
is already supporting our work. Research Institute, announced last year, the government aims for
10 per cent of people diagnosed to take part in dementia research.
Jeremy Hughes
Chief Executive Officer
4 Living with dementia
Dementia Awareness Week: Quick read
What would you say This is the April/May
edition of Living with
dementia, the magazine

to dementia? of Alzheimers Society.

We hear from a woman

This years Dementia Awareness Week, held from 15 to 21 May,
will encourage people to confront their worries by addressing
with Alzheimers in
dementia directly and coming to Alzheimers Society for Brighton who is less
information and support. mobile than she used to
People are being urged to visit our website and fill out a simple be, but who benefits from
post-it note with their message, which will be easy to share on a home support service
social media to help build momentum and dialogue. for her and her husband.
Vivienne Francis, Director of Marketing and External Affairs at the
Society, said, To mark this years Dementia Awareness Week, A man in Hertfordshire
were asking our supporters to confront dementia with their tells us about arranging
experiences, feelings or concerns and show those who are worried a home care package
that theyre not alone. for his mother in Suffolk,
Whatever anyone wants to say to dementia, Alzheimers Society who has Alzheimers.
is here for them and there are lots of ways we can help. We want as
many people as possible to overcome their fears, simply share their
feelings, and tell us what they have to say.
Games for the Brain,
Dementia Awareness Week is an important opportunity for us to being piloted in north
increase understanding of dementia, raise awareness of the Society east England, is focusing
and how we support people, and raise funds in local communities. on bringing younger
The week will be promoted on Smooth Radio, social media and men with dementia
online as well as through articles in the press and hundreds of together for enjoyable
community events. physical activity.
For more ideas of how to get involved or to find out about local
events in your area, visit alzheimers.org.uk/DAW Local campaigners have
succeeded in keeping a
specialist day care centre
for people with dementia
in Cardiff open.

The magazine also

includes dementia
news, updates on our
work and opportunities
to get involved and
share your experiences.

alzheimers.org.uk/magazine Living with dementia 5

In the press Dementia
United
Alzheimers Society is working
with partners in Greater
Manchester on a new programme,
Dementia United, to transform
local peoples lives and set an
example for other areas.
Last year, Greater Manchester
was named as the first region to
gain devolved powers in a range
of areas. Dementia was quickly
identified as a priority for local
health and social care.
Veronica King, Stakeholder
Relations Manager at the
Society, said, Dementia United
will aim to make sure that,
regardless of where you live in

Indigestion drugs: Greater Manchester, you will

have the same high quality

Proton-pump inhibitors care and support from diagnosis

and beyond.
We also want to radically alter
Common treatments for indigestion have been linked with a higher the way services are designed,
risk of dementia in recent media stories, though it is uncertain whether pilot a new key worker to provide
they actually increase the risk themselves. one-to-one support and make use
The reports were based on a study that analysed over 70,000 of new assistive technology.
records from a German health insurance database. People who heavily Other regions, counties
used one kind of indigestion medication proton-pump inhibitors and cities have followed
were at greater risk of developing dementia than people who did not Greater Manchester in signing
take these drugs at all. devolution agreements.
James Pickett, Head of Research at the Society, said, Heavy users of Veronica added, Through
this medication tend to be in poorer health anyway, with a higher risk Dementia United, we have the
of having diabetes and heart disease both of which are risk factors opportunity to create a blueprint
for dementia. for dementia care that could be
It is very difficult to look at these risk factors based on health replicated the length and
records alone and determine how they influence the risk of dementia. breadth of the country.
Although this kind of analysis of population data can reveal trends For more information, see
in dementia risk, it cannot prove whether changing the use of these www.dementiaunited.net
drugs would benefit people.
The Daily Mail highlighted that these drugs are taken by millions of
people in the UK. However, as they are available over the counter, we
cannot say how many people take them regularly or for long enough to
be comparable to the higher risk group in this study.
While some medications may have a small part to play in the
development of dementia, there is a lot that a person can do to reduce
their risk, such as following a balanced diet, exercising regularly and
managing blood pressure and diabetes.

For more about dementia research and our research programme,

see alzheimers.org.uk/research

6 Living with dementia

 In briefs

Photograph: FreeImages.com/Griszka Niewiadomski

Photo competition

Dementia Friendly Awards:

Nominate your stars Take part in our photo
Alzheimers Society is holding the third Dementia Friendly Awards competition for next years
this year to celebrate individuals and organisations who have led the Alzheimers Society calendar.
way in creating dementia-friendly communities across the country. See the ad on p15.
Robyn Sweeney, from the Societys Dementia Friendly
Communities programme, said, The awards allow us to showcase
some of the fantastic achievements being made to improve the lives
of everybody affected by dementia. There are so many stars doing
Your helpline stories
incredible work out there who deserve this kind of recognition. Have you had a good experience
We received over 300 nominations last year we want our of the National Dementia Helpline
supporters to help us double that this year by nominating that you would be willing to share?
individuals, groups and organisations making a difference in Alzheimers Society is keen to
their communities. promote our helpline in the media
Winners and finalists will be honoured at two ceremonies in so that more people know they
October, one for the awards in England and Wales and another in can turn to us for support.
Northern Ireland. To share your story, please email
To find out more, please see alzheimers.org.uk/ megan.cruise@alzheimers.org.uk
dementiafriendlyawards

Fix Dementia Care

Alzheimers Show 2016 The next focus of our Fix
The Alzheimers Show returns to Olympia London on 1011 June Dementia Care campaign will be
this year, with informative talks and practical activities for people to improve healthcare referrals for
affected by dementia alongside a wide range of helpful products people who move into care homes,
and services. since too many lose access to
George McNamara, Head of Policy and Public Affairs at the physiotherapists and others.
Society, said, Come and speak to us at our stand at the exhibition, For the latest ways to get
along with the great many organisations and companies that will involved, visit alzheimers.org.uk/
be there with ideas and information to live well with dementia. fixdementiacare
There will be two Dementia Friends sessions, and speakers from
Alzheimers Society will address topics including knowing your
rights, latest developments in dementia research, personal budgets
and end-of-life care.
Spring collection
The show offers an opportunity to speak to many experts in See the new
person, and this year Law Society solicitors will also be offering spring collection
free 15-minute one-to-one consultations. in our online
For a 25 per cent discount, readers of the magazine can use shop for gift
the code ASOC25 when booking tickets online or at the door ideas, daily
(booking fee applies). living aids
Visit www.alzheimersshow.co.uk for more information and and more.
to use your discount code to book tickets. Go to alzheimers.org.uk/shop

Living with dementia 7

 Next steps
F
ind out more about dementia at
alzheimers.org.uk/aboutdementia

U
se our online directory to find dementia
services near you go to alzheimers.org.uk/
dementiaconnect

F
or ways to support us, visit alzheimers.org.uk/
getinvolved or call 0330 333 0804 (local rate).

8 Living with dementia

A fighting chance
A couple in Brighton benefit from a service providing dementia care and
support at home. Heather Stephen hears about the impact it has on both
of their lives.
A
glance around Edna
Colbournes cosy living
room tells you how busy
she likes to keep, from the stack
of expertly drafted watercolours
in one corner to the Scrabble
board and piles of well-read
books beside her chair.
The 85-year-old grandmother
of two used to love visiting her
local day care centre once a week.
They had a room where you
could make things, she says.
I did origami, baking and I
made cards which I gave out for
peoples birthdays. I like doing
artistic things.
Since she had a fall and the
centre closed a few months ago
because of cutbacks, Edna has
had to keep her hobbies indoors.
This could have been an isolating
time for her and her husband
John, but for the support provided
over the last six months by their
local Alzheimers Society.
Support at home
Sussex Dementia Care and
Support Service workers have
been dropping by the couples
bungalow in Brighton four or
five times a week. Edna enjoys
meaningful activities with them,
and John gets a break to do
chores and follow his own interests.
During each three-hour session
Edna plays Scrabble, bakes
biscuits or reminisces over a
alzheimers.org.uk/magazine
coffee while John, 86, is able
to walk Robbie the dog, an
adorable border-collie cross. He
might also potter in the garden,
pop to the shops or even have the
chance to cheer on his beloved
Brighton and Hove Albion football
team every now and then.
A self-described people person,
Edna thrives on the varied company.
John says, Its great for Ed, as
she cant get out at the moment
after having a bad fall last June.
And she gets on really well with
everyone that comes over.
Oh yes, I enjoy talking,
laughing and being sociable,
she adds animatedly. I just like
having people around for a chat,
dont I Johnny?
Sole carer
Edna was diagnosed with
Alzheimers disease two years
ago. John, a retired train guard,
contacted social services last year
looking for replacement care as
he was finding it increasingly
difficult as her sole carer.
He was also a boxing referee
into his 80s and a talented wood
carver, and he found himself
putting everything on hold to be
there for his wife of 64 years.
Ed needs someone with her
all the time so I have had to give
everything up. I was doing it all on
my own and I couldnt do it any
more, he says. of advice and support.
The Dementia Care and
Support Service can offer help
with personal care, or simply
provide company while a carer
does their own thing.
John didnt feel comfortable
about someone else washing or
dressing his wife but he certainly
needed a break, so he signed up
for respite, or replacement, care.
Although some people pay
for the service John and Edna
were able to secure funding
from social services.
Of course, they could
always do with more help but it
is certainly a good start.
That three hours goes quick,
and though I still havent had
the time to really go back to my
hobbies it does gives me the
chance to get out of the house,
says John.
A lifeline
Home support worker Judy Wigin
is part of a seven-strong team
who visit the Colbournes.
She says, The service in
Brighton was started 20 years
ago by a lady whose husband
had dementia, and it has been
a lifeline to John and Edna
especially after her fall last June.
The couple didnt want
personal care but the respite has
given John a break. When people
get that diagnosis they need lots
Living with dementia 9

That knock on the door can
be just what they need to carry
on doing what they are doing,
and means that the person
with dementia is able to stay
at home a lot longer.
Ben Coleman, who
manages the service, says the
Colbournes are fortunate as this
is not available in every area of
the country.
Alzheimers Society only
runs seven of these services
across England and Wales
and funding varies greatly.
In Brighton and Hove the
local authority contributes to
the cost, or pays in full,
depending on your savings,
but in West Sussex everyone
is self-funding.
Other Alzheimers Society
services offer similar pastoral
support but we are also able
to give personal care as we
are registered with the Care
Quality Commission.
The service enables people
caring for those with dementia
to get out and do what they
want to do, and for the person
with dementia it offers some
independence and one-to-one
attention that so many
people value.
Head injury
The couple have had a lot to
deal with over the years.
Edna has diabetes and has to
inject insulin twice a day. She
10 Living with dementia
The couple have
had a lot to deal
with over the
years. Edna has
diabetes and has
to inject insulin
twice a day. She
has had a few
really bad falls
that involved
head injury.
has had a few really bad falls
that involved head injury.
The first time it happened
was 20 years ago. We were on
holiday and she tripped and fell
backwards hitting her head on
the kerb, and another time she
was on the bus when it stopped
suddenly and she ended up with
brain damage, says John.
Edna began having dementia
symptoms two years ago. I would
go out and think, I dont know
where I am, or would wake up
in the morning and think, What
am I supposed to be doing
today? I got very frightened,
she says.
Although initially diagnosed
with bipolar disorder because
of her extreme mood swings,
hospital tests revealed Alzheimers.
Although I knew something
wasnt right it still came as a
shock, she admits.
Edna is slim, elegantly
dressed and beautifully
made-up, and she speaks with
eloquence and intelligence.
It is clear that she does all she
can to keep her mind active.
I love to read but not novels,
she says. I like non-fiction
because you learn things. I am
very good at Scrabble and Im
always doing crosswords. I just
like words.
Close as ever
Dedicated to her family,
Edna speaks with pride of the
achievements of her son and two
grandchildren. She is as close as
ever to the man she married the
day before her 21st birthday.
When talking about the
difficult times in her life, including
the accident last year that left her
immobile, Edna becomes visibly
upset and John is at her side in a
flash cupping her face tenderly.
Its OK Ed. Well stop now, yes?
Thats enough now.
He says, You know we had
a lot of good friends around here
who would have helped us but
theyve all died. We sure could
do with them now.
The couple may be missing
their friends in their later years,
but they are not alone while
they have the home support
team watching out for them.
The service is indispensable and
John sums up its value simply.
It gives you peace of mind.
It means I can go out and
not worry. I couldnt do without
it now.
 Quick read

Photographs: Simon Callaghan

Edna Colbourne, 85,
hasnt been able to get
out much since her day
centre closed and she
had a fall, but home
support is helping her
and her husband.

Edna used to enjoy going

to a local day centre,
but has had to adapt to
staying at home in the
past few months.

Her husband John, 86,

was finding it increasingly
difficult to be her sole
carer. He contacted social
services for respite, or
replacement, care.

Sussex Dementia Care

and Support Service
workers now visit for
three hours several times
each week, keeping Edna
stimulated and giving
John time to himself.

Married for 64 years,

Edna and John are as
close as ever, and the
home support service
provides a lifeline for
both of them.

alzheimers.org.uk/magazine Living with dementia 11

 Society
Carers together
Peer support groups can offer a lifeline to carers through meeting other
people who understand what they are going through.
Photographs: Kevin Cooper
W
hen Eugene Wilson,
54, talks about the
monthly Carer Support
Group in Cookstown, County
Tyrone, its value is indisputable.
Any problem I have, I go
and ask them. I always tell other
people to go to the group.
Eugenes 89-year old mother
was diagnosed with mixed dementia
over three years ago, and he cares
for her at home while holding down
a job. The pressures can mount
up, and he had a particularly bad
patch a couple of years ago.
Meeting people at the group
is very good, we give each other
tips. Sometimes we have a good
laugh too!
Common ground
Mona McGlade, Dementia
Support Worker, says the groups
12 Living with dementia
members are often dealing
with very different
circumstances, yet have
common ground as carers.
They can say the things they
feel they cant say to others, and
express their frustrations and
how theyre dealing with caring
for the person with dementia.
Sharing problems is not only
about supporting the person in
that situation. It also helps others
prepare for possible future issues
from dealing with incontinence
to feelings of guilt when someone
moves into a care home.
Really worthwhile
Geraldine Dynes, 50, says, The
group is a really worthwhile way
to spend one and a half hours.
Her mother, diagnosed with
mixed dementia three years
ago, moved into residential
care in November.
Geraldine says, I do find the
group very beneficial, even if
its just getting rid of things
Ive been bottling up.
Sometimes youre listening
to someone and suddenly think,
Thats the situation Im in!
Give it a try
Volunteer Anne Thompson enjoys
her role of making sure everyone
feels welcome.
It frees the support worker
up to talk to people. And if you
come every month and see the
same faces there, it helps build
a relationship.
Mona says that everyone is
different, and it can be daunting
to come to a group for the first
time, but she encourages carers
to give it a go.
It took three months before
one gentleman came along, but
hes been to every one since.
You dont know until you try it.
Use our online directory to
find dementia services near
you visit alzheimers.org.uk/
dementiaconnect
Share the caring
26 could pay for one person
to attend a peer support group,
while a monthly donation of
18 for a year could fund a
session for eight people. See
alzheimers.org.uk/donate or
call 0330 333 0804 (local rate).
 Dementia-friendly
churches
A prominent volunteer in Cumbria is working with
churches to provide supportive environments.
D
avid Richardson, a
long-time Society
volunteer and former
trustee, is leading a new drive
to make every church in
Cumbria dementia friendly.
Davids late mother had
vascular dementia, and as
someone active in his church,
it struck him to ask what they
were doing for people affected
by dementia.
Churches constantly say
that they are there for everyone.
This initiative helps make that
claim come true for people with
dementia and carers.
All churches
Encouraged by the Bishop of
Carlisle to involve all churches,
David is now Dementia
Co-ordinator at Churches
Together in Cumbria, an
organisation doing just that.
Each local church has been
asked to nominate a dementia
enabler, who will attend two days
training in April and June.
David says, Its not that the
dementia enabler will shoulder
To find out more, email david.richardson@alzheimers.org.uk
Photograph: The Diocese of Carlisle
alzheimers.org.uk/magazine
all responsibility for anything
dementia related, but that they
should make dementia everybodys
business within the church.
Enabling change
Dementia enablers will become
Dementia Friends, assess
how their own church could
become more dementia friendly
and pin down how they will
achieve this.
The goal is for every church
to support people after a
diagnosis of dementia, make
sure that services are welcoming
and accessible for people with
dementia and carers, and that
both continue to be supported if
the person can no longer attend
or moves into residential care.
Challenge to all
David wants all faith communities
to learn from their experiences
in Cumbria.
What works here will work
for other faiths too. I want to
challenge people what is your
faith community doing to
become dementia friendly?
Try something new
Summer challenge
Summer is an excellent
opportunity to try one of our
exciting challenge events,
whether outdoor swimming,
overseas cycling or parachuting
out of a plane.
For more ideas, please visit
alzheimers.org.uk/events
Subscribe to our
YouTube channel
See all of our latest videos and
podcasts on YouTube, including
a film about how we are building
dementia-friendly communities.
Join us at alzheimers.org.uk/
youtube
Care and cure
Read the spring issue of our
quarterly research magazine,
Care and cure, for the latest
research news and comment.
See alzheimers.org.uk/
careandcure
Issue six
Spring 2016
The Alzheimers Society research magazine
Caring for
carers
Trialling online therapy and support for carers. Page 6
Impact of head Exercise therapy Meeting centres
injuries New research to help New service inspired
Protein clumps found boost independence by Dutch research
in brain years later. in early dementia. trialled in UK.
Page 3 Page 4 Page 9
Living with dementia 13
Change the world
A supporter in Lincolnshire is running this years London Marathon for
Alzheimers Society in memory of her grandmother.
A
s a little girl, Angela
Lambert remembers
watching the London
Marathon on TV and admiring
the thousands of runners
taking part.
She says, I used to say to
Grandma that one day I would
change the world! She said no
matter what you want to do,
just go and do it.
Years later her grandmother
was diagnosed with Alzheimers
disease, passing away almost
four years ago after what
Angela describes as some very
dark times.
Angela, now 30, is helping to
raise awareness in her memory by
running the London Marathon on
24 April for Alzheimers Society.
I want to help stop this
happening to other people. Why
should someones life be robbed
like that?
Huge impact
Angela, near Grantham in
Lincolnshire, was always close
to her grandmother. Her
Angela with sons Jake and Oliver, aged five, and (top right) with her
grandmother as a baby.
14 Living with dementia
diagnosis had a huge impact
on the whole family.
Grandma was my absolute
world, a massive part of my
childhood, she says.
Angela lived nearby and
visited daily with her then
newborn son Jake, now eight.
Id walk in and shed have no
idea who I was, but as soon as I
put my son into her arms shed go
straight into being a mum.
Angela got information and
support from the Society, and
did a lot of research into ways to
cope with the condition.
Ecstatic
Angela has always kept fit, but
her announcement while
driving their two children to the
local pool that she would run
the marathon was still a shock
for her husband.
Ecstatic when she secured
a place in the ballot, she says,
The first thing I did was ring
Alzheimers Society.
The training has been
physically and mentally draining,
particularly through the harsh
winter weather.
I have been through
an absolute rollercoaster of
emotions. Its hard to think
that Grandmas not going to
see me cross the finish line and
know that Ive done it.
Ready for it
With so much attached to her
taking part, Angela says it can
feel overwhelming. I have to
refocus, remember why Im
doing it.
Im really hitting the miles
now and can picture myself at
the start line, with all the people
there, wearing my Alzheimers
Society vest. I feel ready for it.
Since Ive been talking
to people about doing the
marathon, its amazing how
many have also been affected
by dementia. Its important for
people to speak about it
youre not alone.
For Angelas fundraising
page, see www.justgiving.com/
angelalambert
Visit alzheimers.org.uk/events
for a great range of events to
take part in while raising money
for the Society.
 Dispelling myths
Atiq Hassan, Dementia Adviser in Bradford, on raising awareness and
improving access to services.

As a dementia adviser, As well as raising dementia awareness

Im always looking to among south Asian communities, I try to
help people affected by ensure that more peoples voices are heard in
dementia in the way influencing and shaping services. This means
Photograph: Harry Archer

thats best for them
and which suits their
individual needs.
For the many south
Asian families I see, this
means making sure that Im being sensitive to
their particular culture, as well as more practical
considerations such as speaking the right language.
In some cultures, dementia is not widely
recognised as being caused by diseases of the brain,
and words such as pagal meaning mad in some
south Asian languages are still used. I sometimes
show people images of brain scans to help dispel
these kinds of myths and stigma about dementia,
such as it being a curse or punishment.
more people can feel confident in using services
that they previously felt uncertain about.
In Bradford and the surrounding area, we
see more families reaping the benefits of
accessing help and support that they felt
uncomfortable with before.
I thrive on challenges and seek to change
peoples perceptions, and I was honoured to be
nominated for an International Dementia
Award last year.
I try not to take, We are managing OK, at
face value too often, as digging deeper and
understanding the cultural background can help
to ensure that more people in all communities
can access the support that they need.

Calling all photographers

Do you have a favourite place
somewhere that is important to you?
Were looking for photos to include in our 2017
Alzheimers Society calendar. Share your treasured location
and it could feature on hundreds of walls and desktops.

Send us up to three photos of your memorable place.

Photos need to be images of 300dpi or above,
or print photos.
Tell us about why this place is important to you in
Photograph: FreeImages.com/Peter Ong

up to 150 words.
We need to receive all entries by 23 May
email trading@alzheimers.org.uk or send to
the address on p27, marked Photo competition.

Prints are submitted at your own risk and we will not be able to
return them. By entering your photos, you affirm that they may be
reproduced in a calendar for public sale.

Living with dementia 15

In your area
Points of Light
Joy Watson, a Society Ambassador
in Eccles, Greater Manchester,
received the Prime Ministers
weekly Points of Light award
recently for improving everyday
life for people with dementia.
Joy, who has Alzheimers, said,
Receiving an award for doing
something Im passionate
about is bizarre.
We all need a point of light
in what can sometimes be a dark
world. A diagnosis of dementia
can throw you into a dark place,
but if we can lift our eyes, there
are lots of lights out there.
Dorset
alliance
Dorset Dementia Action
Alliance launched in March
with a free conference
involving local individuals,
groups and organisations in
work to create dementia-friendly
communities across the county.
For information about local
dementia action alliances, see
www.dementiaaction.org.uk/
localalliances
16 Living with dementia
First dementia-friendly capital
Society campaigners are challenging candidates in Londons
mayoral and assembly elections to create the worlds first
dementia-friendly capital.
In the lead-up to Mays elections, Alzheimers Society launched
a dementia manifesto Creating a dementia-friendly London
at an event with representatives from all four assembly parties.
Our Ambassador Angela Rippon, who chaired the event, said,
It is unacceptable that a city as dynamic as London is not a global
leader in dementia care. Getting it right here will set a precedent
for other cities to follow.
We need to ensure that we end the postcode lottery and help
improve the lives of the 72,000 people in London living with dementia.
Tell us what you would like the new mayor to do to make London
dementia friendly visit alzheimers.org.uk/dementiafriendlylondon
Belfast bank
Staff at Citi Belfast, who voted
for Alzheimers Society to be
their Charity of the Year, are
aiming to raise 75,000 for
vital services and research.
Our supporters at the bank,
which employs around 1,900 people locally, plan a series of fundraising
events to help improve the lives of people with dementia.
Richard Gilliland, Senior Regional Corporate Partnership Executive
at the Society, said, This partnership will help us to reach out even
more, particularly with starting our Side by Side initiative to recruit
and train volunteers to give one-to-one support.
Second Meeting Centre
A new centre in Herefordshire, based on a Netherlands model, aims
to help people adjust to living with dementia in a positive way.
Leominster Meeting Centre is the second set up by the Society and
University of Worcester, the first having been opened in Droitwich Spa
last year. They will be evaluated in the EU-funded MeetingDEM project.
Ginnie Jaques, Services Manager, said, It is such an exciting
project, which we hope will have a positive impact on the whole
community in terms of offering a support service to people living with
dementia while also providing a focus for Leominster to develop into
a dementia-friendly community.
Could you help someone with dementia
do the things they love?
From going for a stroll in the park, to joining an art class together.
As a Side by Side volunteer you can help a person with dementia
keep doing the things we take for granted.
Get in touch to find out more about Side by Side, locations and to
become a volunteer today.
0845 504 9300
volunteers@alzheimers.org.uk
alzheimers.org.uk/sidebyside
 Next steps
J oin our Fix Dementia Care campaign to improve
the care people receive in all settings
see alzheimers.org.uk/fixdementiacare

F
or ways to support our work, go to alzheimers.org.uk/
getinvolved or call 0330 333 0804 (local rate).

V
isit alzheimers.org.uk/publications for our
factsheets and other resources, or call
0300 303 5933 (local rate).

18 Living with dementia

Making the team
Residential care may seem the only option as someones dementia
progresses, but Heather Stephen hears how one man created
an alternative care package so his mother could remain at home.
M
ark Chipperfield was
always grateful for the
loving family life his
parents gave him after adopting
him as a 10-month old baby.
When they needed his help in
later life, he was only too happy
to give something back.
Six months before my
father died in 2008, my mother
was diagnosed with Alzheimers,
says Mark.
She cared for him for nine
years while he was ill, and
before he died he asked me to
look after her.
Mark and his sister Dawn
wanted to respect their fathers
wishes, but as both live hours
away from their mothers home
near Lowestoft, Suffolk Mark
in St Albans and Dawn in
Eastbourne they felt they
had no choice but to consider
a care home.
I went to look around a
number of homes, says Mark.
But all I saw were grey headed
people with glazed eyes not
doing much at all.
I couldnt see anything
positive for her in that setting,
and as I had promised my
father I would look after her
I decided I had to organise
something myself.
I didnt think she would
survive somewhere like that.
I thought if she could stay
in her own home in familiar
surroundings with a team of
people who could really get
to know her, she would be able
to retain her dignity and sense
of self as much as possible.
alzheimers.org.uk/magazine
Organising care
Initially Mark, a 53-year old
BBC manager, employed a
carer recommended by his Over the years
aunt. The carer came in three
times a day to help with dressing, Mark built up a
meal times and bathing, and
Mark says she was brilliant. band of eight
To help make sure his mother
remained safe and well, Mark carers he calls
installed a CCTV monitoring
system and exit sensors that them the Jean
triggered alerts to a call centre
and a local carer.
Team largely
However, despite these
measures, there were a few
through word
worrying incidents where his of mouth and
mother, Jean, went missing
and was later found walking very careful
in the streets. So three years
ago the family agreed that she selection.
would need 24-hour care to
remain in her own home.
Luckily this coincided with
Mark finally securing NHS
continuing healthcare funding
after years of battling to prove
his mother was eligible.
Mark says, I applied as soon
as we started organising care for
my mother, but it took years to go
through all the assessments and
gather the evidence they wanted.
Even when youve got the
funding they can review your
eligibility every three months,
so it could be taken away at
any time.
A very important tip is to
establish a strong relationship
and lines of communication
with the support agency
network. Mums GP and mental
healthcare nurse have been
particularly supportive.
Living with dementia 19
Jean Team
Over the years Mark built up a
band of eight carers he calls
them the Jean Team largely and remains the caring person
through word of mouth and very
careful selection.
He advises, It is always
best to get carers through
recommendation and if you cant
do that check their references and
follow your instincts.
Mark decided against using
an agency to ensure continuity.
When my father was still alive
and Jean broke her wrist, I
contacted an agency to care for
them and they sent 60 different
carers in the space of 14 days!
Its not easy to arrange
something like this yourself. Even
if you get funding, no one gives
you much guidance. Ive had to
set up something that runs like
a small business with a health
and safety policy, pay roll,
meetings and training. All from
miles away when I have a
full-time job and a family.
Fading health
Jean is 90 now and her health is
fading. She can no longer cope
20 Living with dementia
with the daily trips she once took
to a nearby day centre, but she
still recognises family and friends
she always was.
My mum was a nursing sister
and has always looked out for
other people, says Mark.
Many of her carers have been
with her for years and they really
do love her. One said they had
told her their dog had died and
she put her arm around them to
comfort them, so there is still a lot
going on there.
We are lucky we have such a
brilliant team who really love what
they do and are able to see the
person behind this terrible illness.
Mark is so confident in the
ability of his care team he sees
no reason why his mum shouldnt
stay at home until the end.
People with Alzheimers may
need constant support for quality
of life. If Jean had gone into a
care home she wouldnt have got
the very personal one-to-one care
she has now, which stimulates her
and makes her feel valued. In
fact, I am sure she wouldnt be
here today.
Communication
Mark speaks to his mum on
the phone each day, visits her
every few months and gets daily
updates from her care team
about how she is doing.
Believing that communication
should be two-way, Mark
produces a staff newsletter every
few months to fill them in on
whats going on with funding,
outside care and what he sees as
his mothers latest needs.
As well as mandatory training
from a local agency, he has
enabled the carers to have
bespoke training for Jeans
particular needs. He also holds
meetings where they can feed
back and raise any concerns
or share information about his
mothers care.
Although the process of
setting up the care package has
been difficult, Mark says he
would have found it so much
harder without the support of
his wife Alison.
This period in our lives
has put a lot of pressure on all
of us, but Alison has been
incredibly understanding. I am
very grateful.
Wishes and needs
Mark recommends that people
talk to family members about
what they would like to happen
if their health should deteriorate
as they get older. He adds that
setting up power of attorney at
the right time for at least one
family member is also vital.
He warns against assuming
that residential care is the only
option without investigating
alternatives that could also
provide the right level of support.
I knew I would be able to
extend and enhance my
mothers life if she stayed in
her own home and that is
what I am planning to do right
up to the end. Thats what my
father wanted and Ill never
forget that.
 Photographs: Wendy Turner
Quick read
Mark Chipperfield has set up a package of care for his mother, who has
Alzheimers, so that she can continue to live at her home in Suffolk.

Mark, 53, thought his mum, Jean, would need a care home after she was
diagnosed eight years ago, but he and his sister couldnt find one that felt right.

Instead, Mark arranged for a carer to visit Jean three times a day, along with
monitors and sensors to address safety concerns.

As Jeans needs increased and after securing additional funding this turned
into a 24-hour package of care, and she now has a team of eight carers.

Although doing this has involved a lot of work, Mark is sure it has made a
difference to Jeans quality of life.

alzheimers.org.uk/magazine Living with dementia 21

 Game on
A new service focuses on bringing younger men with dementia together for
physical activities. Julie Penfold attends a session to see how the pilot is going.
M
any younger men
who are diagnosed
with dementia find it
particularly hard to continue
getting out and about to enjoy
their favourite activities.
Alzheimers Society is piloting
a new service called Games for the
Brain in Newcastle, North Tyneside
and County Durham until January
2017. This provides weekly indoor
sporting activities as well as
invaluable time to socialise with
people in a similar situation.
Hannah Woodworth,
Dementia Support Worker, says,
Games for the Brain sessions
aim to improve cognition,
increase feelings of wellbeing
and reduce feelings of isolation
and loneliness for younger men
with dementia.
This group keeps people
active and helps them to
become independent in the
community again. People get
an enormous amount of
enjoyment from the sessions. My husband had dementia
Active together
One Games for the Brain group
takes place every Friday afternoon
at Newcastles Eldon Leisure Centre,
a city centre location chosen for its
easy access via public transport.
22 Living with dementia
Sessions begin with a
10-minute seated warm-up that
everyone participates in, including
carers, volunteers and staff. This
involves arm and leg movements
to get everyone ready for the
activities ahead, and background
music comes from CDs brought
along by group members.
Following the warm-up, there is
a range of fun games to help with
balance, grasp and focus, such as
balloon tennis. One of the groups
main activities is table tennis
which research suggests could be
especially beneficial for people
with dementia to help maintain
co-ordination and awareness
and other popular choices include
ten-pin bowling.
Joining in
Volunteers are on hand to join
in the games and to help with
scoring if needed. Margaret
George is a volunteer who has her
own experience of being a carer.
says. It gets us out of the house
and there was no specific support
for him, says Margaret. He
would have loved this. Im proud
to be involved.
Towards the end of the session,
the group has a fruit and water
break and this gives everyone the
chance to sit down and have a
chat with one another.
Its a very supportive group,
says Hannah. Getting into the city
centre to attend the sessions is a
big deal for some of the members,
and conversations might start with
how someone got into Newcastle
and whether they got the bus or
the metro.
They can also provide help to
one another if there is something
someone is struggling with, for
example, how to go about getting
a bus pass.
Although the group largely
attracts men under the age of 65,
active men over 65 also attend,
and some carers take part as well.
Anne McGuire attends sessions
with her husband, John. For some
time she was the only carer at the
group, but others have begun to
attend and this provides vital peer
support for Anne.
Games for the Brain is 100
per cent beneficial for both of us, she
and doing different activities.
Confident and
independent
The weekly sessions have
helped group members to gain
confidence and become more
 Quick read
Photographs: John Millard

Games for the Brain

is being piloted by
Alzheimers Society
in north east England.
It focuses on bringing
younger men with
dementia together for
physical activities.

Games for the Brain

independent to say nothing of
the improvement in their table
tennis skills!
The service has been especially
invaluable for one member.
Brian Wood has begun to use
public transport to travel to
sessions independently. He has
also made friends within the
group, and Games for the Brain
provides his week with some
much needed routine.
When youre on your own
and living alone, its really nice
to get a phone call from someone
in the group, says Brian.
It stops the loneliness coming
in. People are friendly, helpful and
considerate. Anne gives me a ring
each week to remind me that the
session is on.
Next steps
Games for the Brain is
such a good support. Its a
chance to catch up with friends,
and I know there are people
waiting for me so I cant let
them down.
It feels like a family and
we have a real rapport as
a group.
After a dementia diagnosis,
its important to keep up the
activities and interests that
you enjoy, advises Hannah.
Joining a group who have
similar interests can help to
reduce feelings of isolation
and low mood.
It can also provide a
relaxed setting for people in
a similar situation to be able
to support each other.
offers weekly sessions
that promote activity and
independence. One group
meets in Newcastles
Eldon Leisure Centre.
Sessions begin with a
warm-up, followed by
activities ranging from
table tennis and ten-pin
bowling to balloon tennis.
Volunteers and carers
join in, and although the
group largely attracts
men aged under 65, some
older men attend too.
As well as reducing
feelings of isolation and
low mood, the group
provides a place where
people in a similar
situation can support
each other.

Use our online directory to find dementia services

near you go to alzheimers.org.uk/dementiaconnect

For our Exercise and physical activity factsheet

(529), see alzheimers.org.uk/factsheets
or call 0300 303 5933 (local rate).

Visit alzheimers.org.uk/fundraise or call

0330 333 0804 (local rate) to see how you can
help raise money for vital services.

alzheimers.org.uk/magazine Living with dementia 23

Saving Oldwell
Local campaigners have convinced their council to change its funding
plans for a specialist day centre in Cardiff. Sal McKeown speaks to the
families involved.
A
successful campaign
has persuaded a local
authority to reconsider
its plans for Oldwell Court, a
specialist day centre run by
Alzheimers Society in Cardiff.
In December 2015 carers
and service users heard that
Cardiff Council was to withdraw
161,000 in funding for 19 day
centre places per day, offering
alternatives at three council
centres on the other side of
the city.
Jane Jones, 86, lives
independently and enjoys
socialising and taking part in
activities at Oldwell Court two
days a week. It also provides
support and peace of mind for her
daughters Meryl Randell-Jones
and Karen Deehan, who both
work full time.
Jackie Askey, whose late
husband George had dementia,
also appreciates the value of
Oldwell Court. Four years ago
she was desperate for respite,
or replacement, care the level
of Georges care needs meant
that she could not attend routine
appointments for herself or
spend time with friends.
She says, I needed a place
which would understand him and
which would provide specialist
professional trained help.
Overwhelming response
Meryl and Jackie attended a
meeting about the councils
plans organised by Melanie
Andrews, the Societys Operations
Manager in south east Wales.
24 Living with dementia
The response was
overwhelming, says Melanie.
People were anxious at the
prospect that their loved ones
would no longer able to access
the service.
Their enthusiasm and energy
shone through and the campaign
to keep Oldwell Court open took
on a life of its own.
When they attended an
initial consultation meeting, no
councillors were available and the
council staff who attended were
unable to answer their questions.
Jackie was shocked to discover
how little was understood about
the service. The justification was
that Oldwell Court catered for
people with low level dementia.
This was completely untrue.
Campaign support
Alzheimers Society provided letter
templates and contact details
for councillors, Welsh Assembly
members and MPs. The fact that
the incidence of dementia is
expected to increase by 53 per cent
locally over the next 14 years was
a clear argument for expanding,
not cutting, services.
The campaigners realised they
would have to make sure that the
press, public and decision-makers
had the right facts and figures.
They also highlighted the
stories of service users to show,
just as importantly, the human
cost of the cuts. Meticulous
planning and flexibility meant
that there was something new
happening each week to keep
the story alive.
Petition spike
Alarmed by the threat of
closure to what had become
a vital service, Melanie decided
to galvanise support through
a petition.
The campaign turned a corner,
with the hard copy petition
receiving 2,000 signatures and
the online petition, shared via
Facebook, attracting 4,000.
Karen and Meryl wrote to
First Minister Carwyn Jones, the
health minister Mark Drakeford,
and Andrew RT Davies, the
leader of the opposition in
the Welsh Assembly.
The group was also helped by
Joseph Carter, a local councillor
who briefed campaigners on the
workings of the committee that
would assess the councils plans
and check how well interested
parties had been consulted.
Good news
The campaign resulted in some
very good news the council
decided to honour its funding for
existing service users so they will
not be transferred elsewhere.
This means that Alzheimers
Society can continue to support
families affected by dementia
at Oldwell Court, and the need
for these services has been
highlighted throughout the
community.
Although some families still
have concerns for local services,
a successful campaign like
this shows the power that
people can have when they
work together.
 Quick read
Photographs: Roger Donovan

A local campaign by
families affected by
dementia in Cardiff
has succeeded in
keeping a specialist
Alzheimers Society
day centre running.

Oldwell Court provides a

welcome place for people
with dementia to meet
others and take part
in activities, and many
carers benefit from the
extra time to themselves.

When Cardiff Council

planned to withdraw
funding for day centre
places, local families
were determined to
save the service.

Supported by Society
resources and contacts,
campaigners succeeded
in making their voices
heard in the media and
by decision-makers.

Families continue to benefit from Thanks to the

the day centre campaigners efforts,
the council decided to
honour its funding for
existing services.
Next steps
J oin our campaigns, including those in the lead-up
to elections in Wales and Northern Ireland
visit alzheimers.org.uk/campaign

C
all our National Dementia Helpline on
0300 222 1122 (local rate) for information and advice.

S
ee alzheimers.org.uk/publications or call 0300 303
5933 (local rate) for our publications catalogue.

alzheimers.org.uk/magazine Living with dementia 25

Letters

support from the NHS,

Photograph: FreeImages.com/Hanspeter Klasser

Letter of the month local council and carers
who helped me with
Advanced dementia: day-to-day problems;
support for carers in that way the various
I was interested in what authorities enabled me
your readers thought to look after him.
about the lack of help Sadly, I took one
for carers of people with week off for respite
advanced dementia. care, and John never
I recently lost my recovered from it. He
husband who had went into a nursing
Alzheimers and the home, came straight
same thoughts had from the home into
occurred to me. I hospital for eight weeks,
remember that our another 10 days under
social worker suggested NHS care in a lovely
that my husband John nursing home, after
should attend a weekly which he died. I can
session at the local hardly forgive myself
care home, where he for leaving him for the
would be collected, initial week in someone
stimulating activities elses care, yet I know Alzheimers Society
would be provided, lunch that I really needed
included and he would the rest.
be brought back at the I think the unspoken
end of the afternoon. words are that nothing
The idea was to give me can really be done for
one day a weeks respite people with advanced dementia and their
as well as providing an dementia, and that the
outside interest for him. family just has to cope,
However, John was come what may.
turned down because Some problems just
his needs were too do not have a solution. Dementia Care
great. I remember Sad though I am that campaign is calling
being rather surprised, my husband died, I
having assumed that can see that it was
official carers of those inevitable, and that
with dementia know the local authority and
that the patients need the NHS did their best the latest action, visit
will be considerable. I without actually spelling
have since realised that out the fact that they
not only they but any could not do anything
care home can turn more to help.
down a patient on the Your magazine does
grounds that their needs a good job in shedding
are greater than the a positive light on
home can provide for. what can be done for
I have to say that, sufferers and carers at
caring for John at all stages of the illness.
home, I had plenty of Being part of your
community helped me. care. My wifes recent
Thank you. experience certainly
Rita Duckham, Rutland proved the point.
Having had several
Congratulations to consultations with a
Rita, who will receive a surgeon concerning
bouquet of flowers. a knee replacement
procedure, my wife was
given an appointment
believes that more for a pre-admission clinic
can and should be at a private hospital, she
done to provide the being an NHS patient.
care and support that The interview was
both people with going smoothly, taking
her blood pressure
carers need from and carrying out an
diagnosis and beyond. ECG, when I queried
In the coming the possible effect
months our Fix of medication on
the anaesthesia, in
particular donepezil. I
for improvements in explained that my wife
care at home, in care was on this to control
homes and in hospitals early onset Alzheimers.
to get involved in At this point a ward
sister took over the
alzheimers.org.uk/ interview. She explained
fixdementiacare that patients usually
were confused as they
Another recovered from the
waiting list anaesthetic, and this could
A recent report into be more of a problem for
healthcare for the patients with dementia.
elderly and patients She had not the staff
with dementia stated to provide one-to-one
that there were nursing, and the
shortcomings in such hospital did not have

26 Living with dementia

the resources to deal
with complications
that might arise
post-operatively. talk about how he
As the hospital had
experienced problems
with a patient with
dementia, a policy
of not treating
such patients had
been established.
My wife could not
proceed with the operation,
and our GP would be
informed so that he could
refer my wife to another
specialist, with the
consequence of joining
another waiting list.
My wife was very
distressed, as you may
imagine. Apologies
were proffered by the
sister, but it was out of
her hands etc. We left
the premises with the
prospect of an unknown
waiting time, and
wondering if all elderly
patients were treated in
the same manner.
David Hilton,
Lincolnshire
Dont struggle Forms of address
in silence
I read a short article
in the Daily Express
referring to the study
by Alzheimers Society Mutual reward, you
which said nine out of
10 carers are stressed,
anxious or depressed
and that 80 per cent
of those find it difficult
to talk about the impact
the illness has on
their lives.
My father was my
mothers carer for some a younger person to
years, and during 2015
found the situation and it is how they feel
more and more stressful most comfortable, even
Your turn
but wasnt able to with people they know
quite well and like. It is
felt and how it was great if staff in a care
affecting him. home or hospital or Tell us what you think
Sadly he suffered from social services take write to Magazine
a stroke in September the trouble to ask what Editor, Alzheimers Society,
2015 and the family people prefer. Devon House,
firmly believe that the Rose Constantine 58 St Katharines Way,
stress of caring for London E1W 1LB or email
Mum was a contributory Our popular tool, magazine@alzheimers.org.uk
factor. He is now back This is me, helps to let
home being looked professionals know a Letters for the June/July
after by carers and the persons preferences, issue to arrive by 9 May.
family. Mum moved including how they Views expressed are not
into a care home the like to be addressed necessarily those
day of Dads stroke see alzheimers.org.uk/ of Alzheimers Society.
and is doing well. thisisme or call Letters may be edited.
Having experienced 0300 303 5933 for
first hand how this a free copy.
can impact on us all,
I would urge everyone
in a caring role to Do you care for someone
access whatever
support is available. living with dementia?
Surely the person we
Nine in 10 carers experience feelings of stress or anxiety
are caring for would several times a week, yet many are unable to access the
not want us to help or support they deserve.
struggle silently with
the situation. If this sounds familiar, then you may be eligible to take
Jill Dunderdale, part in the UKs largest research study of online support
North Yorkshire for carers of people with dementia.
Find out more at www.caringformeandyou.org.uk
Only a small point,
but I did appreciate
the fact that in the
February/March article
(mostly!) referred to
Mr Braithwaite
rather than Vernon.
For some people,
like my mother who
died recently aged 97,
it is the normal way
which they remember
from their youth for
address an older person,
This study is funded by Alzheimers Society with support from Nominet
Trust, Stavros Niarchos Foundation and IAPT National Programme
Living with dementia 27
Talking point

Later stages of dementia

As dementia advances, it can become harder to find support to help deal
with day-to-day practicalities and changing emotions.

D
ementia brings many
challenges, particularly
when people reach the
later stages of the condition.
People can become frail
and may struggle with
communication, eating and
mobility. It can be helpful to
know what to expect, and to
learn how to deal with the
difficulties that may arise.
For carers and family members,
this can be an especially lonely
and difficult time. It may be hard
to share how you are feeling,
more so if you are feeling angry,
frustrated or guilty.
Friends and family can
struggle to offer the right kind of
support if they do not understand
what you are going through.

Online community
On Talking Point, our online
community, there are specific
forums for people who are
dealing with the later stages of
dementia and end-of-life care.
There is also a members-only
area for discussing difficult or
sensitive topics.
Talking Point members have
asked how to communicate with
people in the later stages of
dementia, how to adapt meals to
be more suitable and how to deal
with feelings of guilt or grief.
Other subjects have included
falls, difficulty eating, weight loss,
continence issues, bedsores, losing
the ability to speak, tremors or
shaking, and agitation.
Asking others
By speaking to people in similar
situations, Talking Point members
can ask questions, suggest things
that might be helpful to others
and also share their experiences
with people who understand how
they are feeling.
Joining Talking Point is free
and we are open 24 hours you
just need an internet connection.
Find out more at
alzheimers.org.uk/talkingpoint

Magazine Q&A
The magazines editor, Danny Ratnaike, will be asking Talking Point members for their feedback
and ideas through a live Q&A session at 45pm on 14 April.

Join in the discussion at alzheimers.org.uk/talkingpoint

28 Living with dementia

 Activity ideas

Spring greens
There are many activities involving plants,
flowers and gardens that a person with
dementia might find enriching.
In spring, and as summer nears, gardening activities include sowing seeds in pots or beds, pruning shrubs,
preparing beds and borders for planting, watering, ordering plants, planting seedlings and plants, and
cutting grass. Be mindful of plants that could be poisonous, irritating or sharp, and of any help that
someone may need to enjoy gardening safely.
Gardens can also inspire drawing and painting which could also be done from indoors if there is
a view or photography.
Indoors, laying out a selection of plants and flowers can prompt conversation about which people
recognise, their favourites and memories connected to them. A range of herbs may lead to discussion
about where they come from and how they are used in different places. This can also be done using
pictures found online and viewed on a tablet computer.

More ideas are included in our guide Taking part: activities for people with dementia,
currently at a reduced price of 15 plus postage via our online shop please see
alzheimers.org.uk/shop or call 0844 245 1175 (call costs vary).

Storybook to help
young children
understand dementia
Its me Grandma! Its me! is an illustrated storybook
for 711 year olds that explains how a family can be
affected by dementia.
It tells the story of Vicky and her Grandma, who is
diagnosed with Alzheimers disease and how their family
finds help to understand more about it.
This publication costs 2.50 + postage and packaging.
To order, call 0300 303 5933 and quote code 1004,
email orders@alzheimers.org.uk or visit
alzheimers.org.uk/itsmegrandma SPECIAL
to order online. OFFER
Was 4.95
Now 2.50

alzheimers.org.uk/magazine Living with dementia 29

Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499.
Consumer panel

Key fobs and finders

A group of people with dementia in Berkshire tell us what they think
about a range of products designed to keep track of keys.

Readings Empowerment Group meets every month
to look at and comment on everything from training
packages and questionnaires to policies and plans for
work. One of our many service user review panels, this
provides an important way for people with dementia to
influence the work of the Society and others.
Memory problems are a common symptom of
dementia, and many people find that they misplace
and lose keys as their condition progresses. We asked
members of the Reading group to try out products
from our online shop that are intended to help keep
track of keys.
a protective film and peeled this off the fobs
were much more appealing, though this film was
fiddly to remove.
Group members thought the fobs could be useful
for keys kept in one place inside the house. Most
people carried keys in bunches and were not keen on
having a different fob on each one John said he
uses a key chain and finds this effective.

Keeping track
The group were shown three products one
set of fobs to make it easier to see which key is
for what, and two different electronic devices
designed to help find keys if you cant remember
where they are.
The key fobs, available singly or as a set of
five, use clear writing, bold colours and small
pictures to label keys for front and back doors,
car, garage and shed.
The Keyfinder FOFA set comes with two electronic
fobs that you can attach to different items. Each
fob is assigned a number, so if you lose one you
can press its number on the other fob to make
the lost one beep.
Loc8tor Lite is another electronic device, but
uses a handset to find two tags that are each
assigned a button. If you lose a tag and press its
button on the handset, the tag beeps and the
handset shows how close it is using sounds and
coloured lights.

Simple solution
The low-tech key fobs offered a simple solution to
know which key is for what, and the use of words
alongside a picture and contrasting colours would
make it easy to recognise each one.
The fobs looked a bit faded at first. However,
once people realised they were covered with

30 Living with dementia

Set up and range
People had difficulties in setting up the Keyfinder
FOFA and Loc8tor Lite devices, finding the instructions
complex and the writing small. Most group members
said they would need help from someone else to Next issues Consumer panel
assign numbers and buttons to each fob or tag.
Although the pictures in the Loc8tor Lite A group of people with dementia
instructions were useful, Gill noted that they didnt
always match what the actual device looked like.
look at a range of mobile phones.
Both products worked well and with good ranges
within 10m for the Keyfinder and even farther for the
Loc8tor Lite.
Brian liked how the Loc8tor Lite devices in
particular felt to hold, and everyone was impressed
with how the beeps and lights indicated that you
are facing the right direction and getting nearer to
the tag.

Need to remember
People noted that, with both electronic products, you
would need to remember the number or button that
you had assigned to a specific fob or tag if you lost it.
You also have to have one Keyfinder FOFA fob to
find the other, and would need to know where the
Loc8tor Lite handset was to find any of its tags.
Gill said that even though she has a place
for everything she still puts things elsewhere if
distracted, and she could see herself hunting for one
device that she needed in order to find the lost one.
There was agreement that for these products to
work, you would need to have one Keyfinder FOFA
fob or the Loc8tor Lite handset in a fixed place.

Have you used these or similar products? Email

magazine@alzheimers.org.uk or write to the
address on p27 to comment on them so that we
can improve our online shop range and feed back
to designers and manufacturers.
For our full range of daily living aids, see our
online shop at alzheimers.org.uk/shop

Living with dementia 31

Your answers
Sundowning
Talking Point members share tips on supporting a person with dementia who becomes
anxious and wants to go home, often in the late afternoon sundowning.
Mum says she is going to walk home. I let her walk
to the corner of the next road where she stops and
says, Is it OK if I go tomorrow, my knees are sore?
It usually works. Ellaroo
When this problem was at its worst last year, I
would go out with my husband walking around the
streets until he tired. Talking constantly about other
topics while walking helped to distract from the
purpose of our walking.
In truth the only thing that really helped was the
antidepressant medication which was prescribed.
He wasnt depressed, but this reduced the agitation
which made him want to constantly be on the go. It
was a horrible, exhausting time. marionq
Nothing works when my husbands sundowning is
in full flow. It can strike quite suddenly, and theres
no diverting him. It can help a bit, sometimes,
playing music that he likes, especially if we actually
talk about the music.
The only thing that really works is to get in the
car and go out not really feasible late on cold
nights, though we have been supermarket shopping
very late.
Some days he sundowns all day long, but more
often it starts somewhere between 2 and 4pm, and
continues until bedtime. Rageddy Anne
My husband was so frantic in wanting to go home
that it turned to aggression, with him threatening to
smash the door down or kill me if I wouldnt take him
immediately. All the usual things of, Its too dark or
cold now, well go tomorrow, etc didnt work.
32 Living with dementia
In the end it was all day, not just at night.
Sometimes I would ask where home was and say
I would take him, but then he would say, Im not
telling you, and walk out. I sometimes got him to
bed (although he was still fully clothed) saying we
would go tomorrow and five minutes later he would
get up and it would start again.
I used to have to take him to his bedroom, then
run to mine and lock myself in, and just hope he
settled. tigerlady
My wife tends to change more after 5pm and talks
about going home and about having to do things
with other people that gets her very upset.
Once I talk to her reassuringly telling her that
she doesnt have to go home cos she is already
home where she lives with me, and also that she
doesnt have to do anything with other people (as
shed not talked to anyone else for some time), she
calms down and becomes happier again, then turns
her attention to something else, all worries forgotten
about almost instantly. technotronic
See the full discussion thread on Talking Point
at alzheimers.org.uk/talkingpoint
Our Changes in behaviour factsheet (525) includes
more advice on sundowning visit alzheimers.org.uk/
factsheets or call 0300 303 5933 (local rate).
Next issue
Do you have any advice about dealing with
incontinence? Email magazine@alzheimers.org.uk
or write to the address on p27.
Photograph: FreeImages.com/Anja van der Merwe
 Ask an expert

Someone elses bills

My uncle recently moved into a care home. He hasnt set up a lasting power of attorney
but I need to deal with his utility bills as he cant how can we do this?

Resolving problems
Some families tell us that companies say they
cannot help without the persons consent due to
data protection or confidentiality, but this only
restricts the information they give you and not
what you share with them.
If you experience any problems, ask to speak to
a manager or contact the companys head office
they should be able to help.

For a free copy of our booklet Accessing and

sharing information: Acting on behalf of a
person with dementia, visit alzheimers.org.uk/
To access and manage your uncles accounts sharinginformation or call 0300 303 5933 (local rate).
fully, you need to have a legal power set up,
such as a lasting power of attorney (LPA) for
property and financial affairs, or be appointed as
his deputy.
However, there are ways in which you can help
even when these arrangements are not in place.

Providing consent Talk to us.

If your uncle is able to consent to you managing
these bills and dealing with utility companies on his Were here
for you.
behalf, then you could do this for him.
Often consent can be given by phone as
well as in writing. Once they have your uncles
consent, the companies should be able to deal
with you.

Sharing information
If your uncle cannot give consent, you are slightly
more limited in how you can help with his bills. If you have questions or concerns about
Although the companies cannot disclose dementia, our National Dementia Helpline
information about your uncle and his accounts to
you, they can listen to you and act on information
is here to provide information and support
that you share with them. seven days a week.
You should be able to contact the utility
companies on your uncles behalf and let them Call our trained advisers on 0300 222 1122
know about his move into the care home. or email helpline@alzheimers.org.uk
They may wish to see some kind of proof for
example, confirmation from the care home alzheimers.org.uk
before they act on this information.

Living with dementia 33

Alzheimers Society operates in England, Wales and Northern Ireland. Registered charity no. 296645.
Book group
Hearing the
person with
dementia
Readers tell us about a book that
helps put theory into practice,
and we invite you to read When
someone you love has dementia
for next time.
34 Living with dementia
T
his issues book, Hearing the person with
dementia by Bernie McCarthy, looks at
how carers and others can approach
communication in a person-centred way.
Janet Baylis, Manager of our Dementia
Knowledge Centre, says, We talk a lot about
person-centred dementia care. This is the book
I would recommend to anyone who wants a
good introduction to what we mean by this. Its
concise, practical and relatively jargon-free.
Julie Thomas, a reader in Blaenau Gwent,
agrees, I found this book very helpful. It is
well written and the author has made a
difficult topic easy to read and, more importantly,
to understand.
Janet adds, Its valuable for the insights
into how carers can modify their approach and
understand what techniques work being more
empathetic, using specific language, keeping
sentences short and simple, appropriate body
language, smiling and friendly gestures, tone of
voice and pausing.
Cultural view
Chantal Bradley in Bedfordshire, a Dementia
Friends Champion and Society volunteer, enjoyed
reading the book, saying, Quite a lot of what was
written about rang true with my own experiences
of people living with dementia.
However, she notes that its Australian
perspective might jar slightly, whether through
some of the terms used face-washer for face
cloth and aged care home for nursing home
or cultural assumptions about how people wash.
While the book talks about showers, Chantal
points out that some older people in the UK
may be more accustomed to a bath or strip wash.
Ideas into action
Beth Luxmoore, Programme Development
Manager at the Society in Salford, was impressed
by how the book translates a way of thinking into
something practically useful.
She says, It explains the VIPS framework,
which encourages you to consider values, individuals,
perspective and social factors that might impact
each persons communication.
At the end of each chapter there are exercises
and questions to prompt the reader to think about
their own experiences in relation to the ideas in the
book. This could be really useful for enabling people
to put the theories into practice.

Profound effect
Grannie G, on Talking Point, was profoundly affected
by one passage in particular, which underlines the
need for carers to be prepared to alter how they
assert themselves or solve problems.
She says, As someone who has always
advocated walking away to solve a problem and
avoid further conflict, I feel like hanging my head
in shame. Carers have the wherewithal to walk
away. People with dementia often do not. What
did I leave my husband with when I walked
away? Nothing.
Another Talking Point member, gardengirl,
recommends this book for carers who are learning
to adapt as dementia progresses. She says it gave
her an insight into what she could be looking out for
when communication becomes difficult.
Hearing the person with dementia
by Bernie McCarthy, Jessica Kingsley (2011),
112 pages, 12.99, ISBN: 9781849051866.
Recommended by Reading Well Books on
Prescription for dementia (www.reading-well.org.uk)
and widely available in libraries as well as our
online shop alzheimers.org.uk/shop
Your turn
For the next issue,
we invite you
to read When
someone you love
has dementia
by Susan Elliot-Wright,
Sheldon (2016),
128 pages, 8.99,
ISBN: 9781847094032.
Widely available in libraries and also in
our online shop alzheimers.org.uk/shop
Let us know what you think of this book by
6 May so we can share it in our next issue
email magazine@alzheimers.org.uk or write
to the address on p27.
We have five copies to give away email
magazine@alzheimers.org.uk or write to the
address on p27 by 18 April quoting Love
for a chance to win one.
Communicating across
dementia: How to talk,
listen, provide stimulation
and give comfort
by Stephen Miller
Like our Book group title, this recently
published book seeks to explain how we can
learn to communicate well when someone
close to us is diagnosed with dementia.
The author acknowledges that living with,
caring for or even staying friends with a person
with dementia involves challenges, particularly
as the condition progresses. Many of us will
need help along the way to manage the
situation well.
He believes it is up to us to make the
necessary changes, and the book explains how
we can do this in a straightforward way.
Old ways of conversation may no longer
work, and the emphasis should shift to non-
verbal communication. This can make use of
facial expressions, gestures, posture and touch,
and signals in how we speak such as in tone,
volume and speed of voice.
Acquiring good communication skills is vital
to avoid frustration and reduce stress levels, for
the person with dementia and the carer.
Robinson (2015), 224 pages, 9.99,
ISBN: 9781845285708.
Available from www.littlebrown.co.uk
and elsewhere.
Living with dementia 35

Life with Ma
Dillys story continues
Ma has gone back north to her other son
after her new year stay with us. We were a
Photograph: Tony Charnock
bit anxious that she might be confused by
settling into each familiar place only to be
uprooted. However, apart from the packing,
she takes it in her stride.
Packing presents a challenge as she cant
remember what she has at each house and,
crucially, what shes already packed. Her
suitcase is bulging, but might contain jumpers
and nothing else.
This isnt really a big problem as her love of
clothes shopping which involves us having to
steer her from the size 16s means she
has plenty at each house. I hastily add gloves,
a hat and underclothes.
Over four years on and the Aricept
(donepezil) seems to be working for her. Her
memory clinic test score stays the same,
but we worry that the drug may be withdrawn.
We have cheery words with her over the
phone. Shes back in her alternative routine
looking after their ageing dog, ticking off
the things she has to do (eat soup, drink tea)
and filling the house with mountains of neatly
ironed clothes while the TV is on full-blast.
There is no doubt that having a job to do and
loving company keeps her happy and the
dementia at bay.
We watch her hunched over her endless
crossword books still pretty good, though
asking for help sometimes with a mixture
of gratitude for her continued brain power,
and apprehension about this fading further
one day.
Dilly, a daughter-in-law
(continued next issue)
36 Living with dementia
Q&A
Bridget McEvilly
Torbay, Devon, aged, 69
with Alzheimers disease
What changed most after your diagnosis?
After the initial shock I gave myself a good talking
to and decided that I had to just get on with my
life. I announced to friends and family that I had
Alzheimers and they needed to be a little more patient
with me. Otherwise I said I wanted to carry on my life
as normally as possible. The response was great and
made my life much easier.
What song or tune sums up your life so far?
I still love pop music Gordon Lightfoot, Neil Diamond,
Dusty Springfield, Elton John, Adele and dare I say
One Direction and Little Mix! Finding one song would
be difficult, try Sweet Caroline by Neil Diamond and
Adeles When we were young.
What single thing would improve your quality of life?
Apart from the Alzheimers it would be to be relieved of
my rheumatoid arthritis, which affects every aspect of
my daily living. This tends to demoralise you anyway,
and that doesnt help the Alzheimers.
If you could go back in time, where would you go?
To the 70s and 80s, when I was much younger and
healthier in all aspects.
What is your most treasured possession?
My dogs they are such wonderful companions and
give you so many reasons to get on with your life, they
couldnt be better.
If you have dementia and would like to
answer our questions for a future column
email magazine@alzheimers.org.uk
or write to the address on p27.
alzheimers.org.uk

Dementia Connect the

easy way to find support
near you
Dementia Connect is Alzheimers Societys online services directory for anyone
affected by dementia in England, Wales and Northern Ireland.
Its the most comprehensive online directory of its kind, with over 4,000 listings of
local information and support services that can help people with dementia, their
families and carers to live well.
Use our simple search to find services that are nearest and most relevant to
you today.

alzheimers.org.uk/dementiaconnect

Alzheimers Society operates in England, Wales and Northern Ireland. Registered charity number 296645.
Winners
and answers
Reminiscence cards
competition
Our February/March competition
was won by N OCallaghan in
Essex and J Nicholls in Wiltshire.
Answer: Oklahoma! came out in
the 1950s, Sentimental journey
was released in the 1940s.
Key finder and fobs
competition
We have a Loc8tor Lite key finder (see p30) for one
lucky winner and key fobs for six runners-up drawn
from correct entries received by 9 May.
Who was given the keys to the city more
correctly known as the Freedom of the City
of Leeds in 2001?

Alan Bennett
Jane Tomlinson
Nelson Mandela

Hearing giveaway
The five readers who won a
copy of Hearing the person with
dementia by Bernie McCarthy
were C Atfield in Suffolk,
K Bowditch in Kent, C Bradley
in Bedfordshire, J Harris in
West Yorkshire and J Thomas Send us your answers to both questions along with your name,
in Blaenau Gwent. address and telephone number for us to receive by 9 May
please email magazine@alzheimers.org.uk or post to Magazine
Editor, Alzheimers Society, Devon House, 58 St Katharines Way,
For Reminiscence cards and London E1W 1LB.
the book Hearing the person
with dementia, see our online The Loc8tor Lite and key fobs are available from our online shop
shop at alzheimers.org.uk/shop along with a wide range of other helpful products
please see alzheimers.org.uk/shop

38 Living with dementia

Join
ShareAlzheimers Society
your story and inspire others
Alzheimers Society connects people affected by dementia and our supporters with
local and national services and provides ways to get involved
If my in what
experiences we
can help do.carers
other Once you
join, you will receive Living with dementia magazine six times
and people per year.realise how much
with dementia
we have in common, Im all for it. Dementia
can have
Becoming a part of the Society is an important way of supporting us.aItway of making
helps you feelour
us strengthen isolated
and it doesnt have to be like that.
campaigning voice and generates valuable funds to continue improving the quality of life for people
with dementia, their carers and families. There is no fixed feeHayley,
to join,carer and Living with dementia
we just ask that you donate
magazine reader
whatever you can afford towards our work.
You probably know someone who
If you would prefer to talk to someone about joining Alzheimers Society, or you may have the
has dementia
please call 0330 333 0804 (MondayFriday, 9am5pm). condition yourself.

Your story could encourage more people

to benefit from this magazines wide
range of articles, signposts and opportunities
to get involved.

If the magazine has helped you, please email your contact details and story to withus@alzheimers.org.uk
or write to Heather Hurst, Alzheimers Society, Devon House, 58 St Katharines Way, London E1W 1LB.

We may not be able to respond to everyone who is kind enough to offer to share their story, but thank
you for your support.

Information, advice and support

Our easy-to-use online directory Dementia Connect can help you to find out about dementia services in your area,
see alzheimers.org.uk/dementiaconnect

National Dementia Helpline for England, Wales and Northern Ireland call 0300 222 1122 (national rate or less)
9am8pm Monday to Wednesday, 9am5pm Thursday and Friday, 10am4pm at weekends.
See alzheimers.org.uk/helpline for Live Online Advice and other information.

Talking Point is our online support community for anyone living with dementia. To find out more, please visit
alzheimers.org.uk/onlineforum

For a range of information about dementia see alzheimers.org.uk/publications

and for videos and podcasts featuring real-life stories and more
visit alzheimers.org.uk/videos

Alzheimers Society is the leading support and research charity for people affected by dementia in the UK.
Alzheimers Society, Devon House, 58 St Katharines Way, London E1W 1LB

alzheimers.org.uk 020 7423 3500 alzheimers.org.uk/facebook alzheimers.org.uk/twitter

Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499.
Copyright 2015 Alzheimers Society.
Please ask us if youd like to copy our content or use it elsewhere email magazine@alzheimers.org.uk
Singing for the Brain, Dementia Awareness Week and Memory Walk are trademarks of Alzheimers Society.
Were pleased to announce
the launch of our brand new
online shop!

10% off
your first
*order*

Using research from people affected by dementia, and our regular customers, weve created
a new website that is brighter, bolder, and better than ever before, making your online shopping
experience even more enjoyable.
To celebrate the launch, were offering 10% off your first order*
simply add the voucher code CIPLW10 at the checkout.
If you dont fancy shopping online, you can order over the phone by calling our team on
0844 245 1175, seven days a week (calls cost 5p per minute plus your usual network charges).
Every purchase you make helps fund Alzheimers Societys work, supporting people living with
dementia and their families, and getting one step closer to a cure.

*Valid till midnight on 31 May 2016.

Offer applies to a single order and cannot be used
in conjunction with any other offer.