The dementia guide: Living well after diagnosis - Alzheimer's Society

132 Pages·2014·1.33 MB·English

The
dementia
guide
Living well after diagnosis
1
About this guide
This guide is for anyone who has recently been told
they have dementia. This could be any type of dementia,
such as Alzheimer’s disease, vascular dementia or
mixed dementia.
It will also be useful to close friends and family of someone
with dementia, as it contains information for anyone taking on
a caring role.
The booklet will help people to understand more about dementia
and the treatments, support and services that are available. It
includes information about living as well as possible with dementia
and about making plans for the future.
You might choose to read the whole booklet, or, if you prefer, focus
on the parts that seem most relevant to you. Each section starts
with summarised key points. These have been included for people
who may prefer to read an overview of the section rather than the
whole thing.
You will find a checklist on page 118. It lists some of the things
discussed throughout this guide that you can do to help you live
well now and plan for the future.
This guide has been produced by Alzheimer’s Society with support
and funding from the Department of Health.
For more information visit alzheimers.org.uk
2
A s i s o n g a i d f o a i t n e m e d na c se u a c a eg n a r f o s .n o i t o m e eTh w s en
t h g i m em o c a s a kc o,h s , r o ro f em so , e l p eo p t i y am gn i r b a se n se f o
fe i l e r a s ti esd i v o r p na no i t a n a l p x e ro f eht s m e l b o r p y e h t e va h ne b
g. n i c n e i r e p x e t I na c so l a e va h a g i b c a p m ti no y l i m a f dna s .d n e i r f
f I ,u o y ro eneo m os se o l c o t ,u o y e va h y lt n e ec r ne b se do n g a i d
ht i w a ,i t n e m e d uo y t h g i m eb gn i l e f , r g ny a ,ed t a s r t u r f ,de i r r o w
,lre au f f ,ds a a,sed s r r a b m e , y l e n o l ytl i u g ro ne v e ed. v e i l e r en or e y v E s i
t ,n e r e f f i d tu b lla es h t s nco e a i t r e ra el b i s s o p ta t n e r e f f i d es m i t dna
y e h t e ra lla l.a m r o n w Ho uo y le f ll i w y l b ab o r p r a yv mo r f en o y ad
o t eht x e n t .
‘ eW ew nt otu an d ec learb te d hw en I aw s id ang oes ,d
eb ac eus I finall y nk e w hw at aw s orw n g iw th me .
I oc lu d tell people I“ haev iP s ’ k c id es aes ’ . ”
Graham, East Sussex, living with Pick’s disease
(frontotemporal dementia)
‘ evE n thohgu ew epx ecte d it , o ru firts er action aw s
to eb irf hg tene d an d pu es t . I thin k m[ y habus n ]d
thohgu t it id minihs e d him a s a peros n an d ef lt
ahs ame d. tuB time ha s hc aneg d that , eb ac eus it
hans t’ id minihs e d him in an y aw ’ . y
Brenda, West Sussex, carer for a person with Alzheimer’s disease
Call the National Dementia Helpline on 0300 222 1122
3
f I oy u ac ,n at lk ot rf iesdn a dn af mil y aob u t ho w oy ur’ e ef elign .
Oht er ep olp e en e d ot uedn rsat dn hw a t oy ur’ e goign ht rough.
The y migh t eb if idn gn ht ign s har d ot o , so at lkign ac n hel p ob ht
oy u a dn ht em. There are also sep ic alis t healht a dn soic al ac re
rp oef ssioan ls oy u ac n at lk ot of r suop rt.
oY u iw ll if dn a lis t o f Alzheimers’ Soic e yt seriv ec s o n ap ge 60 1
a dn oht er useuf l orgain sait osn ht a t ma y eb alb e ot rp oiv ed
iofn rmait o n or suop r t o n ap ge .0 1 1
f I oy u d’ like ot at lk aob u t ht e iofn rmait o n i n ht is guied , lp ease
hp oen Alzheimers’ oS ic es’ yt aN it oan l eD meitn a eH llp ien o n
0 03 0 2 2 2 2 2 1 1 – ac lls are hc arge d a t a loo-wc s t raet . hT e eH llp ien
is of r aoyn en aef ect d y b ed meitn a a dn is oep n a9 mmp5–
oM adn yr– F iad y a dn 0a1 m–mp4 o n Saut rad sy a dn uS adn sy .
rT aien d hellp ien aivd sers ac n rp oiv ed oy u iw ht iofn rmait o ,n suop rt ,
guiad ecn a dn sigopn sit gn ot oht er arp orp iaet orgain sait osn .
Throughou t ht is ob okle t oy u iw ll see suggesit osn of r
Alzheimers’ Soic e yt af c tsheets. oY u ac n ored r ht ese usign ht e
of rm o n ap ge 1 2 1 or see aehzl imerso. rkug.f/ actseh ets
oF r af c tsheets sep ic if c ot Norht er n rI ela ,dn lp ease oc atn c t oy ur
loac l Alzheimers’ Soic e yt oif ec .
s’ t I imop rat tn ot kon w ht a t oy u are t ’ n aloen – aob u t 0,8 0 0 0
ep olp e i n ht e KU haev ed meitn a. s’ t I op ssilb e ot liev ew ll iw ht
ed meitn a a dn ht ere is suop r t aav ilalb e of r oy u a dn oy ur af mil.y
For more information visit alzheimers.org.uk
5
Contents
1 About dementia 7
2 Treatments 23
3 Living well 39
4 Planning ahead 51
5 Services for people with dementia 71
6 Support for carers 85
7 Research 101
8 Alzheimer’s Society services and support 106
9 Other useful organisations 110
10 Checklist 118
Order factsheets 120
Keep in touch 123
Feedback 125
7
1 obA tu ed mentia 12
nI tih s section
eK y op ints : obA tu ed mentia 8
ahW t is ed mentia? 0 1
ahW t are teh smy tp oms ? 1 1
ahW t are teh ac su es ? 2 1
y h W od some ep oelp eg t ed mentia ? 4 1
epy T s of ed mentia 4 1
iM dl oc ng itive imap irment 1 2
For more information visit alzheimers.org.uk
obA tu ed mentia
8
1
Key points: About dementia
Dementia occurs when the brain is affected by
a disease. It’s not a normal part of ageing.
Dementia affects everyone differently and can
cause a wide range of symptoms. These can include
problems with memory, thinking, concentration and
language. People may become confused or struggle
with how they perceive things. Dementia can also
cause changes in mood or emotions and affect how
someone behaves.
Dementia is progressive, which means that
symptoms get worse over time. However, many
people with dementia lead active and fulfilling
lives for many years.
There are many different types of dementia.
The most common are Alzheimer’s disease
and vascular dementia, which are sometimes
combined (called mixed dementia). Less common
are dementia with Lewy bodies and
frontotemporal dementia.
About dementia