1. Dementia diagnosis from a PWiD’s perspective Christine Bryden

2. Where does our journey start? n Confusion... n Tiredness... n Stressed... n Life’s like a confusing roundabout!

3. The trials of testing n Neuropsychological tests n Brain scans n Other tests n Fear and dread n Embarrassment n Clinging to the hope it can be cured!

4. Black and white reality of a scan

5. The “dementia script”!!! n “You have dementia.” n “There is no cure.” n “You have about 5 years till you are ‘demented’... n … then you can expect to live about another 3 years.”

6. Shock of diagnosis andhorror of prognosis n A turning point … –trauma, disbelief or relief n Awful awareness of future –our world has collapsed –everything has changed n We face a defeat of spirit and of hope!

7. Our identity crisis n Loss of identity n Who am I? n Will anyone respect me? n Who will I be when I die?

8. We both become victims... n I thought my world would end n A mix of emotions … fear, dread n Didn’t know much about dementia

9. Withdrawing into denial... n I was scared … angry … to think Mum wouldn’t know me. n The only way I could cope n was to withdraw to my horse

10. Carers, martyrs and sufferers? n 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. n I needed to be there for her.

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

12. Stigma of dementia social isolation n Myths and fears about dementia lead to stigma n This gives us a “degenerating sense of nobodiness” –(Martin Luther King) n We are isolated by the stigma of dementia

13. But there is hope! n Inform us n Give us treatment n Offer legal help n Offer emotional support n Encourage us to be positive n We can reach for the stars together!

14. Making music with what’s left n We celebrate a new life in the slow lane, n as we try to find the pearls within us. n Our attitude transforms the pattern of our life, n so we are no longer victims but survivors

15. Sharing this journey from diagnosis to death n We have been liberated from fear of ceasing to be. n Let’s work together to thread a new necklace of life from the pearls we have discovered.