The support that I need Christine Bryden

Becoming a labelled person Problems since 1988 Problems since 1988 Medical tests in 1995 Medical tests in 1995 Diagnosed with AD, then FTD Diagnosed with AD, then FTD Living in fear and shame Living in fear and shame

My book … Who am I? Who am I? Denier Denier Victim Victim Realist Realist Who will I be when I die? Who will I be when I die? Emotional being Emotional being Spiritual self Spiritual self

My 2001 MRI scan

My scan is my curse - a symbol of a life transformed The “dementia script” - “You have about 5 years till you’re demented, then about three years till death.” 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 This is like a hospice in slow motion But biology is not the only determinant of function, nor of my humanity 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! Drugs at diagnosis slow decline, but do not delay treatment! I still function OK due to medication, as well as my previous ability I still function OK due to medication, 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! 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 My identity crisis Who am I? Who am I? My environment is vital My environment is vital Where am I? Where am I? My daily struggle My daily struggle How can I cope? How can I cope?

What’s it like? Existing in the present moment, looking at life unrolling before me and behind me like a carpet Existing in the present moment, looking at life unrolling before me and behind me like a carpet The diary IS my life, recording all that has happened and will happen in my life The diary IS my life, recording all that has happened and will happen in my life

Our environment Keep it simple Keep it simple encourage routine, encourage routine, make sure there’s only one thing happening at a time make sure there’s only one thing happening at a time Understand our aggression or apathy as adaptive behaviour Understand our aggression or apathy as adaptive behaviour

Communication Listen “with your eyes” as we try to tell you how we feel Listen “with your eyes” as we try to tell you how we feel Value us so we feel in relationship with you Value us so we feel in relationship with you It’s the way you talk to us, not what you say, that matters It’s the way you talk to us, not what you say, that matters Just be with us – your caring presence is enough Just be with us – your caring presence is enough

Visiting It’s not a cognitive event but an emotional connection It’s not a cognitive event but an emotional connection It’s the way you talk to us, not what you say, that we will remember It’s the way you talk to us, not what you say, that we will remember This is what is so important to understand when visiting us This is what is so important to understand when visiting us

Spirituality We are losing our cognitive self, even a reliable and coherent emotional self What remains is a spiritual self - whatever gave us true meaning in life - that you can connect with Make sure you know what that was before connecting with us – it’s not a time for conversion, but of reminiscence and reflection.

Keeping an open mind At diagnosis At diagnosis Living With Memory Loss Living With Memory Loss At home alone At home alone Systems Systems At home with family At home with family Support, education, “time out” Support, education, “time out” Residential care Residential care Person-centred care Person-centred care Atmosphere more important than decor Atmosphere more important than decor

Where to now? Use it or lose it! Use it or lose it! Have a positive attitude Have a positive attitude Live each day to the full Live each day to the full