An insider’s view of dementia
Christine Bryden
What it is like to have dementia and
what you can do to help us
Becoming a labelled person
• Problems since 1988
• Medical tests in 1995
• Diagnosed with AD, then FTD
• Living in fear and shame
My book …
• Who am I?
– Denier
– Victim
– Realist
• Who will I be when I
die?
– Emotional being
– Spiritual self
My 2001 MRI scan
My scan is my curse - a symbol of
a life transformed
• It led to the “dementia script” - “You have
about 5 years till you’re demented, then
about three years till death.”
• This is like a hospice in slow motion
• But biology is not the only determinant of
function, nor of my humanity
Treatment delayed
is treatment denied
• Drugs at diagnosis slow decline,
but do not delay treatment!
• I still function OK due to Aricept, as
well as my previous ability
• It’s like I used to juggle more balls
than most, and still can keep a few
in the air!
So what does it feel like?
• My identity crisis
– Who am I?
• My environment is vital
– Where am I?
• My daily struggle
– How can I cope?
We face an identity crisis
• Fear of future decline
• Depression
• Anger and grief about loss
• Shame and isolation
Dementia is far more than just
brain damage
• Psychic resources
• Personality
• Environment
–
–
–
–
noise
stimuli
changes
not being heard
Juggling and struggling
• Kaleidoscope of problems
• Like an impossible juggling
of a multitude of struggles
–
–
–
–
–
doing daily tasks
speaking thoughts
writing words
reading stories
calculating numbers
Living in a fog
• Confusion
• Tiredness
• Memory loss
• Emotion
Stressed, restless and manic
• Agitation and anxiety
• Apathy or focus
• Panic storms
• Paranoia and delusions
Sleep, dreams and reality
• Dreams become vivid
– What is dream?
– What is reality?
• Sleep eludes us
– like jet lag
– can’t switch brain off
• Hallucinations and illusions
What are the keys for coping?
• Faith
• Love
• Drugs
• Attitude
Dancing with dementia
• Accept how it is for me
• Connect across the divide
between your world and mine
• Let’s transform personal
tragedy into triumph
• Let’s inject new meaning and
dignity into the veins of
civilisation