Diagnosis, Drugs and Determination

1. Diagnosis, Drugs and Determination Christine Bryden Dementia Advocacy and Support Network International

2. From diagnosis to death • Where does this journey start? • A kaleidoscope of problems: • something's not quite right, • irritability, tiredness, stress, • gaps in memory. • Life’s an inside struggle and an uphill battle. • “It feels like I am clinging to a precipice with my fingernails.”

3. Tests, tension, apprehension • Subjecting ourselves to the medical process. • The insult of the MMSE. • Scary scans and other tests. • Impersonal medical reports. • The agony of waiting, wondering • … let it be something that can be treated and cured, I don’t want to lose my very self.

4. That moment of diagnosis ... • … is etched in our memories, like the day when President Kennedy died. • Trauma, disbelief or relief. • Waving the distress flag as our ship of life sinks ... • … we feel helpless, powerless, and we’ve lost our identity.

5. Becoming a labelled person • A label “dementia” is attached and we become depersonalised. • It feels like a big stop sign has just been placed on our life’s path. • The stigma of dementia has joined us on our journey … • … which we and our family face together with fear and uncertainty.

6. Targeted by stigma ... blindfolded by fear • Our lives become limited by stigma, almost as if a target was painted on our forehead. • We retreat in shame, blindfolded to our own potential. • Our inner world is in turmoil as we suffer anticipatory grief at loss of self and of others.

7. But is that diagnosis right? • Often we’re labelled Alzheimer’s ... • … but what about fronto-temporal dementia (FTD), vascular dementia, Lewy Body dementia? • What about our access to anti-dementia drugs?

8. “When I have fears that I may cease to be” • Give us information about dementia, don’t assume we lack insight. • What about counselling and support groups? • Help us “to bear witness to the uniquely human potential … to transform a personal tragedy into a triumph.”

9. Remember: treatment delayed is treatment denied • DO NOT DELAY! • Give us anti-dementia drugs at the moment of diagnosis to slow further decline. • Advise us to take Vitamin E and Ginkgo biloba.

10. What the drugs do for us • Without the drugs it’s a fog. • They give our life back … • … and give us the key to a new future. • But we still ebb and flow like a parallel universe of untreated and treated dementia.

11. Moving from being a victim to becoming a survivor • The challenge is to draw on our psychic resources, personality and biography … • … to step across that yawning chasm of fear that opened up at that moment of diagnosis. • By our attitude, we can create a new image of who are becoming, and find meaning in our lives.

12. “It is the artist’s task to find out how much music you can still make with what you have left.” • Discovering new talents, focussing on relationships, emotions, spirituality. • Assigning cognition a secondary place, being content with life in the slow lane… • … we have “time to prepare for a new future” and find peace.

13. “Transforming the patterns of our life is always done in our heart.” • We need to find out what we can celebrate on this journey with dementia. • The fleas in Ravensbruck kept away the guards for Betsie Ten Boom. • “Life is 10% what actually happens to us, and 90% how we react to it.”

14. What you can’t feel,you can’t heal. • We’re on a path to healing through feeling. • Casting aside the lie of dementia, we can create a new future. • Bridging the gap between our world and yours, we help you understand us and our needs.

15. A fine balance ... • … between pretending at normalcy or withdrawing into helplessness. • What is normal in this abnormal disease? • Reclaiming my life with realism and humour, with you alongside me as a partner in my endeavour.

16. Getting back into the driving seat of life! • Confronting the fear of a living death, drawing on our inner resources. • Finding the pearl hidden within us. • Working together to build a new future, by sharing, supporting and encouraging.

17. Horizons of hope • Liberation from internalising the oppressor of dementia. • “As we are liberated from our own fear, our presence automatically liberates others.” • We seek a new paradigm of dementia survival with dignity … • … walking with you on that journey from diagnosis to death.