Dementia diagnosis from a PWiD

1
Dementia diagnosis from a PWiDs perspective

• Christine Bryden

2
Where does our journey start?

• Confusion ...
• Tiredness ...
• Stressed ...
• Lifes like a confusing roundabout!

3
The trials of testing

• Neuropsychological tests
• Brain scans
• Other tests
• Fear and dread
• Embarrassment
• Clinging to the hope it can be cured!

4
Black and white reality of a scan
5
The dementia script!!!

• You have dementia.
• There is no cure.
• You have about 5 years till you are demented
  ...
• then you can expect to live about another 3
  years.

6
Shock of diagnosis and horror of prognosis

• A turning point
• trauma, disbelief or relief
• Awful awareness of future
• our world has collapsed
• everything has changed
• We face a defeat of spirit and of hope!

7
Our identity crisis

• Loss of identity
• Who am I?
• Will anyone respect me?
• Who will I be when I die?

8
We both become victims ...

• I thought my world would end
• A mix of emotions fear, dread
• Didnt know much about dementia

9
Withdrawing into denial ...

• I was scared angry to think Mum wouldnt know
  me.
• The only way I could cope
• was to withdraw to my horse

10
Carers, martyrs and sufferers?

• I was very concerned for Mum and took care of a
  lot of things at home ... although I lost it
  couple of times and cried my eyes out.
• I needed to be there for her.

11
Care-partner

• Not smothered by your care,
• nor isolated by your denial,
• nor cast aside as a victim of your grief.
• But a care-partner walking alongside to meet our
  increasing needs

12
Stigma of dementia social isolation

• Myths and fears about dementia lead to stigma
• This gives us a degenerating sense of
  nobodiness
• (Martin Luther King)
• We are isolated by the stigma of dementia

13
But there is hope!

• Inform us
• Give us treatment
• Offer legal help
• Offer emotional support
• Encourage us to be positive
• We can reach for the stars together!

14
Making music with whats left

• We celebrate a new life in the slow lane,
• as we try to find the pearls within us.
• Our attitude transforms the pattern of our life,
• so we are no longer victims but survivors

15
Sharing this journey from diagnosis to death

• We have been liberated from fear of ceasing to
  be.
• Lets work together to thread a new necklace of
  life from the pearls we have discovered.