Dementia diagnosis from a PWiD’s perspective

Christine Bryden

Where does our journey start?

Confusion ... Tiredness ... Stressed ...

Life’s like a confusing roundabout!

The trials of testing Neuropsychological tests Brain scans Other tests

Fear and dread Embarrassment Clinging to the hope it can be

cured!

Black and white reality of a scan

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.”

Shock of diagnosisand 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!

Our identity crisis

Loss of identity

Who am I? Will anyone respect

me?

Who will I be when I die?

We both become victims ...

I thought my world would end

A mix of emotions … fear, dread

Didn’t know much about dementia

Withdrawing into denial ...

I was scared … angry … to think Mum wouldn’t know me.

The only way I could cope

was to withdraw to my horse

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.

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

Stigma of dementiasocial 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

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!

Making music with what’s 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

Sharing this journey from diagnosis to death

We have been liberated from fear of ceasing to be.

Let’s work together to thread a new necklace of life from the pearls we have discovered.