Advice from Others

What the
professional experts
say about dementia
What we
(experts through lived experience)
say about dementia
What really helps us
to live better
with dementia

   Dementia is a physical disease that
     affects 1 in 3 people over the age of 65

   It’s a degenerative, progressive condition
     that affects the functioning of the brain

   Dementia is more than just memory loss
     – it can affect all cognitive processes
     including :
     -    the ability to plan, reason & make
           rational judgement
     -    speech & the ability to communicate
     -    personality & behaviour
     -    the capacity to make reasoned &
           informed choices
     -    sensory misperceptions
     -    mobility
     -    depressive episodes

   There are over 100 different types of
     dementia, including :
      -    Alzheimer’s Disease
      -    Vascular Dementia
      -    Lewy Body Dementia (DLB)
      -    Fronto-Temporal Dementia (FTD)
      and it can sometimes be difficult to give
      an exact diagnosis

   Although there is currently no cure for
     dementia :
     -    some medications
     -    cognitive stimulation therapy (CST)
     -    music therapy
     -    keeping physically active
     -    reminiscence
     -    socialising
     have all been shown to relieve
     symptoms for a period of time

   It’s nothing to be ashamed of

   Sometimes the words just disappear...
     they often come back a few minutes
     later… too late

   It’s like a stutter – the words just get
     stuck

   I have trouble following conversations if
     there’s more than one person talking to
     me

   I hate the glazed look and the shutter
     coming down when people talk to me

   I can’t find the punchline in a joke

   It’s like walking into a brick wall, but
     sometimes I can climb over it or walk
     round it

   I have moments of real clarity

   My brain doesn’t work fast enough to tell
     my legs what to do, so walking is
     difficult – I have to concentrate on
     putting one foot in front of the other

   On a good day it takes me half an hour to
     get to bed - on a bad day an hour and a
     half

   You can still have a good laugh
     – laughter is essential

   I’m more in tune with music now

   I’m not being held down by it

   I might have dementia – I can’t even
     spell it – but it doesn’t stop me from
     enjoying life to the full

   See me as a person rather than as a list
     of symptoms – & please don’t pity me

   Family is so important – my wife is my
     rock

   Friends – please come and visit – it’s as
     awkward for me as it is for you, but I
     really do appreciate your company

   Routine

   Time – just slow down and give me
     more time – I get there eventually

   Making notes

   Keeping a diary

   Keeping interesting newspaper articles
     to re-read later

   Having a chance to discuss my
     symptoms & learn about my diagnosis

   Understand that I sometimes have bad
     days – but I’m trying really hard

   The more you talk the better it is

   Laughter

   Letting me do things – I hate it when I’m
     not allowed to even try

   A more positive language – I am not a
     dementia sufferer and I'm certainly not
     mad!