VIDEO: An insider’s perspective on what you can do to help a person with dementia – with JKP author Christine Bryden

In this video, Christine Bryden – author of Who will I be when I die? and Dancing with Dementia – gives family members, carers and professionals an insider’s perspective on what it feels like to have dementia, and what they can do to help.

Stay tuned for more videos from Christine Bryden and her husband, Paul, on the JKP Blog!

Christine Bryden has worked in the pharmaceutical industry and as a senior executive in the Australian Prime Minister’s Department. Following her diagnosis with Alzheimer’s Disease in 1995, she has been instrumental in setting up local support groups for people with dementia and has addressed national and international conferences. In 2003 she was the first person with dementia to be elected to the Board of Alzheimer’s Disease International. Her first book Who will I be when I die? was published in 1998 and has been translated into several languages. She lives in Brisbane, Australia.

Living with Dementia: A journey to the inner self – An Interview with Christine Bryden

Since Christine Bryden was diagnosed with Alzheimer’s Disease in 1995, she has been instrumental in garnering local, national and international support for people with dementia. In 2003 she was the first person with dementia to be elected to the Board of Alzheimer’s Disease International.

Who will I be when I die? is the “prequel” to her first JKP book, Dancing with Dementia. In it she recounts the emotional and spiritual rollercoaster she found herself on immediately after her diagnosis and provides unique first-hand insights into how it feels to gradually lose the ability to undertake tasks most of us take for granted.

In this interview, Christine reflects on the source of her unwavering positivity and sense of purpose, and the work still to be done to achieve greater empowerment and respect for people with dementia as individuals.

This is a profoundly moving and personal book – what made you write it Christine?

It was 1995 when I was diagnosed, at the age of only 46, and views were very different back then. People with dementia were thought to be mindless empty shells and to lack insight from the moment of diagnosis. There was no support for us, only for our families. I was amazed that this should be the case, but felt the task of changing these attitudes was too daunting for me, as I had enough problems coming to terms with my diagnosis.

But by what I call in my book a “God-incidence”, at the time that I was going through the awful time of testing and final diagnosis, I was part of a team preparing to run a weekend Christian retreat called Cursillo. This not only provided me with all the support I needed, but also put me in touch with Professor Elizabeth MacKinlay, who was also on this team. She is a gerontological specialist nurse, as well as an Anglican Minister. By the end of our time on Cursillo, I had plucked up courage to ask her to be my spiritual adviser, to help me through these dark and depressing times in my life.

We met monthly for prayer and encouragement, and Liz suggested that I think about writing my thoughts and feelings down. Soon a book began to emerge, reflecting on what it feels like to go through the trauma of diagnosis, the isolation of the stigma of dementia, and the fear of the future with this disease that is meant to take away your identity, your sense of self.

How did it feel to reflect back, and how are you now?

It was like looking into a window, peering into someone who was fearful of what the future held, who did not know she was about to embark on an exciting and challenging journey to change attitudes around the world!

It was also quite confronting to see the depth and breadth of my vocabulary, and the amount of research I had been able to do on the science of dementia. That was another window onto the past, opening out to someone I could no longer recognise as being me.

Once I realised how much had changed – even since 1996-1998 when I wrote this book – I then asked a former work colleague of mine if she could write a few words reflecting on what I was like in the mid 80’s to early 90’s, well before my diagnosis in 1995. She is one of a very few colleagues who has kept in touch with me over the years. Her words describe someone who has long ago been lost to the ravages of dementia:

“One of Christine’s defining characteristics was the speed at which she worked and the number of projects she juggled at once. … What do I see as being different now between the ‘then’ Christine and the ’now’ Christine? The main difference is speed – she certainly doesn’t juggle projects and ideas like she used to.

She is … much more passive – someone else does the organising. The ‘now’ Christine is slower, sometimes forgets the names of things, takes longer to understand new information, and may not remember what I have told her. … While the doctors may tell her she has lost a lot of brain function, they don’t realize how much she had to start with, so losing some brain cells has brought her back to average from stratospherically high.”

– Dr. Lyndal Thorburn, Viria Pty Ltd.

After 15 years, much has changed in my functioning. I am far more reliant on others, and far less capable than I was back then. I am increasingly frustrated and angry at my difficulties with finding words when speaking, and my equally increasing difficulty in writing words down. I am not as much in control of my emotions, so find it hard to control anxiety and depression, as well as anger and frustration.

When I wrote the book, I lived alone with my youngest daughter, who was then aged nine. Now I would no longer be able to live alone, and feel really blessed to have met and married my second husband Paul. With his patient support and encouragement, I am still doing far more than would be expected by looking at my latest scans, but still very much less than 15 years ago.

What gives you the strength to remain positive?

My Christian faith gives me deep meaning in life, giving me hope for the future and a perspective of my life being eternal, not simply limited to what we see on this temporal plane.

Now I have met so many people with dementia around the world, all at various stages of ability due to their declining function with these diseases that cause brain damage. Each person still remains an individual, with their true inner being shining through without words. The eyes remain a window into someone’s soul, and reflect our humanity.

Each person with dementia is making an important journey away from outer masks of cognition and function in our superficial world of what we do. They are travelling within, to a world of emotions, even if these become increasingly scrambled with the dementia. Emotions connect us to each other, allowing us to form relationships, which are a mark of truly being human. Then, deep within, their journey is to the inner self, their reflection in the divine. This is what gives me an abiding sense of meaning as I travel on this journey from diagnosis to death.

For me, I remain positive, feeling that I am gaining along this journey a far better sense of what it means to be truly human, and that much can be achieved to help others as I travel this path.

How much do you think our understanding of people with dementia changed since you were diagnosed?

When I first started, there was no support for people with dementia, as it was assumed we lacked insight. Indeed the words of an Annual Report in 2000 of an Alzheimer’s Association spoke of us as being “mindless empty shells”. At first when I spoke up, people did not believe I had dementia because I could still speak. They said that even if I was showing the early signs, I was not a credible representative of people with dementia because of my level of function.

Yet since then I have met so many others who have this diagnosis who are speaking out, and being included in the activities of Alzheimer’s Associations. We are receiving so much support and encouragement, and we are being listened to and respected. No longer are we being dismissed. By treating us as experts in what it feels like to have a diagnosis of dementia, services and support are being much improved.

More remains to be done, as there still is so little understanding of dementia in the community. Even people who come into my home to help me when Paul is not here don’t realise that dementia is a terminal illness, leading to death, nor do they understand that it is caused by brain damage as a result of more than around 100 different diseases. Still the mindset is of an elderly person in a nursing home who is unable to communicate, and who can be treated somewhat as a child.

Yet the diseases that cause dementia are diseases like any other, and can strike at any age, although they are more likely to occur as you get older. And after diagnosis people are usually still functioning reasonably well, with support and encouragement. It is inclusion and being valued that we need, not exclusion and isolation.

What do you hope readers will take away from your book?

An understanding of what it feels like to be diagnosed with dementia: the shock and horror of diagnosis, the overwhelming fear of the future, and the isolation as a result of the stigma surrounding dementia in society.

We can provide hope and encouragement to help overcome the fear, and we can do much more to change public perception of dementia that isolates us in a spider’s web of stigma.

Christine Bryden
December 2011

Copyright © Jessica Kingsley Publishers 2012.

“Cognitive flexibility is the hallmark of a productive, happy and healthy young adult with Aspergers Syndrome” – An Interview with Dr Michael McManmon

Dr. Michael P. McManmon is the founder of the College Internship Program (CIP) that serves college-aged students with learning differences and Asperger’s Syndrome in six centers across the U.S. CIP’s goal is to prepare young men and young women with skills for life, for work and for independent living. Dr. McManmon was diagnosed with Asperger’s Syndrome at fifty-one years of age. His personal struggles and ensuing victories and that of his students and staff have inspired this book. He lives in Massachusetts in the U.S.

Made for Good Purpose: What Every Parent Needs to Know to Help Their Adolescent with Asperger’s, High Functioning Autism or a Learning Difference Become an Independent Adult

What led you to found the College Internship Program (CIP), and how does it work?

I had worked for private and public group homes for younger and older children for about ten years and when I moved to Massachusetts, during the era of deinstitutionalization, I wanted to open a transitional apartment program for students coming out of residential schools and institutional programs. I read Wolfensburger’s Normalization Theory while studying for my Doctorate in Special Education and wanted to implement it in a community-based program where students could experience living in normal living conditions.

The College Internship Program opened in 1984 and is a community-based program with six sites around the U.S. We offer a comprehensive curriculum for students with Learning Differences and on the Spectrum. Students live in apartments and can attend college or be involved in career studies. They learn everything from banking and budgeting to apartment skills and executive functioning skills. They have instruction in social thinking, sensory diets, wellness, etc. both in individual sessions and modules at our centers.

Why do you think it has been so successful?

The program is individualized and encompasses all the main areas that students with learning differences would need to work on. We can create an individual program of services for each student and then move them to less intensive supports as they progress. Students are assessed and given the exact services that they need to succeed.

Can you talk a little bit about your personal connection to Aspergers Syndrome?

Initially, I was diagnosed in 2004 by our Academic Coordinator (who worked for me at our center in Massachusetts). This was after operating the center for more than fifteen years. It was near the time that we first had contact with Stephen Shore and invited him out for a day to share information. It also coincided with a visit we made to see Ami Klin who was at the Yale Child Study Center. Ami referred to us as one of the foremost College Programs for Aspergers and we left there quite mystified, as we knew only a little about Aspergers Syndrome at the time. After meeting with both Stephen and Ami and my staff diagnosing me, I became fascinated with reading about Aspergers and started to formulate a comprehensive curriculum for our program.

How did your diagnosis affect your life?

My diagnosis was a huge shift psychologically for me. I realized that the goofiest parts of my personality that I was trying through my life to hide were actually my best traits. I started to be myself and to learn about how to respond socially to others, use eye contact, work as part of a team, etc. My self-esteem rose as I learned to initiate, be reciprocal and succeed at working at my goals. I was workable with others and in community. My adult children had a Dad who was a human being and not just a Human Doer. Before diagnosis, I struggled to be able to operate one small center – after diagnosis, I am able to navigate the world, have six centers, and can maintain relationships.

I feel like a child let loose in a candy store. It seems to me that I can operate like a normal adult in any area I choose to participate. I know how to ask for help, to form alliances, and I am open to change and experiencing new things in my life. I would say I am very happy.

Can you tell us a bit about your book, Made for Good Purpose – what was your goal in writing it?

The goal in writing the book was to explain from the inside out the critical variables for parents and professionals to understand in dealing with young people on the spectrum. I have been told that I serve as some kind of “emotional translator” of sorts and it is almost like I have lived a double life and am able to interpret for them the important approaches to working with their sons and daughters.

The book was a labor of love and it illustrates through stories the relevant steps that need to be taken. The overriding message is that cognitive flexibility is the hallmark of a productive, happy and healthy young adult. All other growth is predicated upon being open to change and feedback and understanding who you are and accepting it.

Read a Preview of Made for Good Purpose »

Your book contains beautiful illustrations. When did you first start drawing, and how do you find time to do this?

I started drawing as a young child and was punished for it in second grade but persisted in it. In college, I wanted to transfer to art school after taking every art course I could at my college, but my father was not supportive. I buried my art when raising six children. After diagnosis my art became reinitiated and it transformed when I allowed myself to use color for the first time about five years ago.

I draw and paint everywhere I go and I am always completing several pictures at one time. I just force myself to whip out the watercolors and pad wherever I travel.

You also write beautiful poetry – when did you start?

I started writing in the seminary in High School and I still have my writings from that time. In college, I wrote many poems and they were published in our literary magazine. I wrote a lot on my job all night in a hospital during the summer and also when I lived in the slums of Washington D.C. after college. My poetry writing came mostly to a halt when raising my children and started to reshow itself in the last five years also.

What is your next big challenge?

My next big challenge is to start Visual and Performing Arts Centers and programs at each of our six centers around the U.S. I have created one at our center in Massachusetts where we have an art gallery (Good Purpose Art Gallery) and a theatre in an old church that we have renovated called the Spectrum Playhouse. These venues provide outlets for our students for their talents and integration with the surrounding artistic community. This is not a challenge but another work of love. My passions are all about this and I feel much joy and satisfaction from continuing to work on these projects.

Another project I have started is another book entitled The Assets of Aspergers. This book is a totally positive look at the wonderful traits of those on the spectrum and how they make life better for all of us.

Copyright © Jessica Kingsley Publishers 2012.

Interview: JKP author Georgina Derbyshire Stands Up for Autism

Georgina Derbyshire lives with her young son, Bobby, on the outskirts of a small town in Derbyshire, UK. Starting her career at a local newspaper, she then went on to work for the courts service, join the police force, become a financial advisor and now works in sales & marketing. As diverse a career history as she has had, she considers her most challenging and rewarding role to be that of mother to a child on the autistic spectrum.

Here, Georgina answers some questions about her book Stand Up for Autism: A Boy, a Dog, and a Prescription for Laughter and her action-packed life with Bobby.

Why might parents of children with disabilities feel like they need ‘permission’ to see the humour in their situations, and why is it so important that they do?

I think there are many times when we want to laugh but can feel a bit guilty. It may be because laughing at a situation or a comment could be perceived as laughing at the child or at their difficulties and challenges, but this isn’t the case at all. Some things that our children say or do can be especially poignant in certain situations and, quite often, they can say things that are so truthful, we just wouldn’t dare say them ourselves! There shouldn’t be anything sad or embarrassing about situations like these. We should see the humour in it and not feel guilty to laugh out loud. I think it is important to embrace moments like these as we have enough of a hard time and laughing can help redress the balance. Laughter is very good for stress too, so there’s no excuse!

How do you think your ‘upbeat and constructive’ attitude has benefited your son Bobby?

Given the chance, Bobby will willingly take-on the worry and anxiety of everyone around him and so it is important that I try and neutralise those feelings by being more light-hearted. It isn’t always easy and it took me a lot of time and practice, but I now try to throw a positive light on every negative thought that he brings to me. Of course, I do take his concerns and problems very seriously, but I encourage him to understand that the world is not completely full of doom and gloom. This attitude benefits Bobby by encouraging him to laugh with me and this, in turn, makes him feel not as concerned about his differences. I laugh at myself, too, which helps! If, as his mother and “anchor”, I show a tense and sorrowful attitude towards him and the autism, then he will grow up feeling the same about himself. That’s something I’ll always do my utmost to avoid.

How do you stand up for autism at home and in the community?

Whenever I learn anything about autism, I usually share it with Bobby. I let him watch TV programmes showing inspirational people on the spectrum and remind him of the wonderful characteristics he has which make him so unique. I never portray autism to him as a ‘problem’ or something to be ashamed of and I tell him that he will have an important purpose in life, just like everyone else. At the moment, he believes that his purpose is to find the missing 0.1% of bacteria that no cleaning products have yet identified!

In the community, I meet with parents of newly diagnosed children as I know people can feel very isolated at that time. I am a member of Derbyshire Autism Services group, the National Autistic Society and Mencap and I support every disability awareness campaign at local and national level. As Bobby is quite well known locally, he makes his own contribution to awareness-raising and this is usually a positive contribution (but not always!)

Why was it so important for you to write down and re-tell your stories?

I could remember the main stories quite easily, but occasionally I would forget something really funny that Bobby had said or done and so I decided to write them down. Bobby loves to hear these stories, over and over again, and so I didn’t want to forget anything. Getting the stories in a more structured format was hugely cathartic as it reminded me of some of the fantastic experiences we have had and what an absolute joy he is. As a result, I have become more determined to discourage some of the stigma that people attach to autism – recounting the stories made me remember just how awful I felt at the time and that I shouldn’t have been made to feel the way I did. These days, I refuse to be embarrassed. I politely explain to people if there is a problem, but then it’s up to them whether they choose to understand or remain ignorant.

You must have enough stories to fill a library… How did you decide which ones to put in the book?

I had to put Bobby’s absolute favourite stories in the book as I thought this was only fair. There are hundreds of things I would have liked to have included, but he refused permission for some of them as he considered them “strictly confidential”! Everything I have included has been double-checked with him to make sure he is happy about it and I feel this is the least I can do. I do have a tendency to ramble on a bit, so I had to keep the reader in mind and try not to overload them with too much. Funnily enough, there have been a number of incidents since writing the book and I have wished they had happened before so that they could have been included. I am still keeping notes though!

What is the most important lesson that parents can learn from your experience?

The most important lesson is to take every day as it comes and deal with everything as it happens. The challenges we face today may be very different to those we will face tomorrow. Worrying too much about today’s problems will mean you aren’t prepared for tomorrow’s because you’ll be too exhausted! I also think that it’s essential to support your child and live your lives in a way which suits your circumstances. No child is the same as the next, and the same goes for children with autism. Always remember that you know your child better than anyone else and you are doing the very best you can. If other people don’t understand that, then that’s not your problem. Be your child’s advocate, smile, laugh and stay very strong!

If you had to choose one of Bobby’s (many) hilarious quotes to put on a t-shirt, what would it be?

It would probably have to be “You know where you are with sheep”. I know exactly what he means with this one as sheep are predictable, don’t talk a strange language and are placid creatures. They also tend to walk in the same direction at the same time! Bobby said this comment with absolute conviction and feeling, and I couldn’t help but agree. Closely followed by “… but what about the other 0.1%?!”

Read a sample chapter!

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Copyright © Jessica Kingsley Publishers 2011.