About a month ago I was asked my the Museum of Modern Art to present the keynote presentation at a conference attended by most of the leading fine art museums of the World. The purpose of the conference was to examine the current movement in World Class art museums to invite people with dementia and their caregivers into their galleries on days when the museum was closed to the public. These have been highly successful programs. It turns to the surp[rise of many that people living with the symptoms of dementia can still think/talk/react/respond to art!

The numbers represent slides I used to reinforce my presentation. The title of the presentation was Words about words about people with dementia. Here it is:

Hello ————– my name is Richard Taylor and for the past eight or so years (5), I have been living with the symptoms of dementia, and the voice of my neurologist ringing in my ears when he tolled (6) “Richard, you have dementia, probably of the Alzheimer’s type.”

I stand here today (7) not as the voice of dementia, not even as a voice of dementia. My erratic cognitive abilities coupled with a memory that is increasingly undependable, creates a voice in me that changes from day to day, sometimes from moment to moment.

I stand before you today (8) as one person who lives with the symptoms of dementia. There are another ten million plus Americans diagnosed and another 10 Million Americans who could but are not yet diagnosed. There are 20 million souls (9) all standing next to me, each with their own story, each with their own stigmas and myths. In twenty years there will be 50 million of us diagnosed and undiagnosed, all will be living with the symptoms of dementia. All of us and each of us, regardless of the stage of our dementia, are whole human beings, living with similar, but not identical disabilities. (10. ) Because the symptoms of dementia are sometimes amenable to the efforts of our brains to compensate for them, I believe (11. ) if you know one person with dementia, you only know one person with dementia. You do not know the symptoms, the thoughts, the workings of everyone living with the diagnosis of this or that form of dementia simply because someone in your family had or has dementia. You do not know what it means to live with dementia because you know ten of us, or a thousand of us.

I am who I am, in spite of my symptoms of dementia because in so many ways my (15,) spouse and (16. ) family fully support my newfound purpose to stand up and speak out about what it is like to live with dementia.

Today I am deeply honored to have been asked to address this audience of (19 ) Dementia Angels.

Now even Angles can be judgmental and you are probably wondering when it is I am going to get to speaking to the advertised topic

Well here goes… But first a caveat emptor. I am not a physician, a pharmacists, nor have I earned nor won any prestigious and highly regarded awards, other than of course the love of (21. ) my family.

I am here convince each of you what your probably all already know (22. ) the map is not the territory.

Telling you something most of you already know:

when someone is mapped by someone wearing a white coat as having dementia, probably of this or that type, most of us see the territory who walked in the room as being significantly different from the territory who will walk out of the room.

(23.) Alfred Korzybski was the first person with an apparently effective press agent to tell the world: that the maps, the words we use to describe the territory of our existence are not the actual territory. Of course, he had to create maps about maps to tell us this. And of course, he ended up living with a form of insanity brought on by thinking about thinking about thinking.

So what happened to me when I was told: (24) “Richard you have dementia, probably of the Alzheimer’s type”? What happened to my view of who I was? Who I would become? How would my territory change in the next 5 to 20 years?

Would I die twice? Would I lose my soul? Would I suffer? Would I end up (25.) being a shell of my former self?

And, what happens to how others see me – professionals, friends and family, docents, volunteers, guards when they discover the new title to the Map of Richard – Suffering from Alzheimer’s disease. (26 )

Richard is in the midst of the long good bye.

Will others and I see the territory between by ears as being (27.) half-full or half empty? And how will my territory be perceived as I move from being labeled as pre clinical Alzheimer’s to Mild Cognitive Have I yet experienced my first death? You know my family and I have been informed by people who claim to know what they are talking about, that I am going to (29.

Of course, none of these mapmakers have experienced firsthand the symptoms associated with (30. erratic; I was going to say failing hippocampus. Of course, all these experts use labels in their own idiosyncratic ways. Of course, all these experts believe in their hearts they know the territory. (31 ). The Pygmalion effect seems to work equally well as a tool for strengthening or weakening some one’s self image of themselves.

One noted psychiatrists once told me in confidence that he could “smell” dementia when some demented soul walked into their waiting room.

Each and all of these experts were first given the dementia map by someone they respected, who in turn was given the map from someone they respected. - They all learned from some ones who did not have dementia, and so on all the way back to the “father” of the most commonly used map to describe the territory of dementia, (32. Dr. Alois Alzheimer. And as a historical footnote, he did not want his name to become the map that even now still keeps me up at night, still is the source of my fears and my tears.

So in I walk into your (34. museum, your studio, your office to experience your idea of a creative engagement, a person centered activity, a humanizing dementia experience.

Here comes your nonpharmacological support therapy/experience/engagement - pick the map that fits for you and me…35) who am I? What am I? How will I act? What can I do and not do? What do I want to do? Why?

For heaven’s sake Don’t ask us, ask (36 )some ones who never had dementia, some ones who learned about what dementia really is from some ones who never had dementia, and they learned from someone whose map of someone living with the symptoms of dementia described a territory filled with hardened arteries.

To understand and engage with us some of you will, attend a symposium, read a book, remember your grandmother, living in the dark bedroom at the back of the house who mumbled to herself and frighten you when you were a young child. Or perhaps you could read the maps of dementia in (37 the popular press. Watch TV and see how others describe us. Listen to the words of the (38, National leadership of Alzheimer’s and other related dementia Associations.

Perhaps you should follow the lead of politicians ( 39 ) who have swallowed the “This is an Alzheimer’s crisis claims (40 ) hook, line and sinker. Instead of seeing the millions of folks living with the symptoms of dementia as a Public Health crisis of tsunami proportions.

But wait, I forgot, I am preaching to (41.). Why are we here talking about this? Why am I the keynote speaker? Why notan expert on engagements, the brain, dementia, art? After all (42 I know good art when I see it. Why I can still recall and come close to reproducing the first note of the tenor part in the hallelujah chorus, (43. ) tenor’s part. At least I can in my own mind.

I believe I am here because we all need to be reminded, in my case reassured that I have a chronic disability, (44.) not a death sentence to be served upon me twice.

I need to be enabled, not disable. And some folks deeper into their own symptoms than I, flat out need to be reabled.

(45. My disability will worsen with age. It will make it more and more difficult for me to express how I feel, what I want and need. Indeed, my ability to drive to your museums has already been disabled. My ability to remember what I saw and what I felt when I was participating in your activities fades quicker for me than you. The peak experiences I have with you fade faster, are less accessible to me than was the case six months ago.

First came the “they can’t do anything movement. (46.)

Then came the they can do some things, like (47. ) play bingo, and maybe fold socks but that is about all movement.

Now there is an actual theory that claims the words “you have dementia” starts an inexorable and predictable regression (48.) back into the mind of an infant.

So why not show (49 )us as helpless, old old, wanders, more to be pitied than censored.

Comes now the “(50 Wow they can (51 sing. Wow, some of them can still (52 ) play a musical instrument, in fact some can learn how to play a new musical instrument, and look (53 ) some of us can paint. Wow some of us really enjoy participating in (54) drum circles, wow we can talk about and appreciate (55 art. We still have our own opinions. We still can think and interact with each other on levels higher than those required to play Bingo, or dumb down trivial pursuit.

The louder your wows the more I wonder just what were your initial beliefs concerning our needs, wants, and abilities.

I’m sure if you that even if you aren’t now teaching psychology you can recall from your psychology courses the pyramid of need drawn by ( 56. ) Abraham Maslow. His insights saved us all from a life defined by spinal reflexes, non-introspective thinking, a life lived to it’s fullest by outside stimulus, and internal primal urges.

Instead of trying to understanding what it means to be human by studying broken minds, Maslow studied the most successful minds. What he found were universal needs. (57. ) Needs that were layered from the most essential to the most fulfilling.

because my diagnosis, my map is associated with an increasingly empty head, and indeed recently someone who should know better claimed my disability will for sure rob me of my soul, Because my map looks to others as if Maslow’s pyramid (58 ) stood upside down, my ego needs, my social needs, are ignored in favor of meeting what many believe are my real and eventually only needs - security, and body needs.

For heaven’s sakes, keep me from falling, from wandering and Feed me (59. ) on a red plate so I will eat on average 2 more ounces of food per day. Should I act agitated rush me to a light/sound room and bath me in stimulus that will calm the savage beast in me. Failing all that half a gram off (60 xanax or a little atavin sprinkled on my breakfast cereal will achieve the same ends – I will be safe, and unfortunately, I will be sorry, sorry that more of my upper needs are not being met.

And who (61. ) will be most satisfied, knowing that my safety needs are being overly met? Who will sleep better at night knowing I was given a bath today and I am wearing dry, clean depends?

And oh yes, who will protect my need for privacy? To live a dignified life? Who will enable me to stay connected? To spend my days, not in meaningless activities, but in purposeful engagements?

Occasionally entertaining me with visiting (62 ) accordion players does not keep me sound. Sitting around (63)singing old hymns is okay, I guess, as a Sunday activity, but is it a strong enough reason for me to open my eyes the other six days of the week?

And so, I fade away.(64. I don’t rise to occasions, I easily slip into myself, never to exceed your expectations of me. I run a real risk of becoming the very territory my map labeled me as being the day I was diagnosed. Will I become the new face on a new (65 Alzheimer’s stamp)Alzheimer’s Stamp? Will organizations sell maps with my face on them in order to raise funds to meet their own needs and wants?

I sure as hell hope not!

And what of my needs for (66. ) love, friendship, comradeship, self respect, personal worth, autonomy, and dare I say it aloud – what about my need to live a purpose full and purpose filled life? I still need and by virtue of my humanity deserve a shot at at occasional self-actualizing moment.

Well, remember you have dementia, probably of this or that type. You can’t do this or that anymore. You can’t go here or there by yourself any more. I read all this in the fine print called the legend of your map.

And why I am asking/telling you what to do: I want you all to lighten up on reminiscing with me (67. ) about all my yesterdays, and make your first priority helping me understand today. Just like you, I must live in (68. today, today…) today. I can’t live forever in yesterday. You can easily move from yesterday, to today, to tomorrow and back. My hippocampus lacks the consistent ability to quickly move me from place to place over time.

Please don’t ask me to paint, sing, and dance as if it were yesterday. Enable me to paint, sing, and dance to a tune of today. Let me make my own music. Share with me my joy at being myself, as I am (69. speaking) today.

I am always thinking, processing and using the same inputs you receive, only my hippocampus draws increasingly different conclusions, different pictures of who I am, where I am. But, please never ignore the fac. I always am. But increasingly the way I process my thoughts, the way I organize my thoughts is slower and produces increasingly vastly different todays than does your hippocampus.

My news, my reminder, my plea to you all is I will always be me. (70 picture of RT and Christina) Even when I can’t talk about me, even when I don’t appear by your standards to know me, I am still Richard, damn it. My “take away” for you is: (71 ) I am Richard!

Abraham Maslow saw us all, regardless of physical or mental disability as living with the same needs. He saw us all as needing to be good. I map this as needing to live a purpose l and purpose filled life. We all need to feel good about ourselves, (72) regardless of the map/label used to define us, our health, and the condition of our cognitive functions. We all have a deep, abiding, and perpetual need me meet this need to feel good about ourselves, what we are doing, who we are. (73. ) Dementia does not systematically erase these needs.

For Maslow, for me, and actually for everyone without purpose, without goodness in their hearts, spirits/souls, and minds - we are truly a walking cloud of dust, blown about my random wind currents. For how can know, how can we feel, how can we chose the means to meet our needs for love, direction, wholeness, integration, and a need to finish and to have a true destiny point unless we live in and through our purpose, our goodness.

Without goodness, we do not have a clue. We are a cloud of old dust, waiting for the wind of our heart and lungs to literally die down so we can truly give up living.

Just so are we all on the same page = the map is not the territory (74 and creating more maps about maps bring you no closer to understanding me! We don’t need more maps. We need socialceuticals, but that is a subject of another creative engagement.

(75 ) It is all well and good that you are starting to invite us into your creative engagements, but please don’t kiss and run, drum and leave, engage and return to your other lives as soon as the time with us is up.

Stay engaged. Be creative. Listen to us. Be with us as you would be with another other human being who does or does not have some physical disability.

The maps we use to describe the present group of dementia maps are based on (76.) flat earth assumptions. There are no real angels; it is just something nice I say about those who commit a part of their lives to helping others. (77 ) I know there is no pipeline of cure pills. That is one of the ongoing myths growing out and supported by the Pharmaceutical industry and their cheerleaders and fundraisers. And most unfortunately there are still several flat earth societies selling old flat earth maps describing human being living with the symptoms of as being something increasing less than full of the need for higher level needs to be met.

Even the most up to date maps about dementia were created by some mapmaker who assumed what the territory was, is, and will be. Even though those they had never been there in person.

Meeting one or one thousand (78. ) nude mice, living with one purported to have dementia is not the same as being a nude mouse – never has and never will be the same, will never be a replacement for spending time with me.

Please don’t let the medium, the activity, the improved environment become the message. Smiling for a moment, tapping my foot, clapping my hands, even standing up and talking and dancing are a good place to start - not a good place to end.

I’m still looking at the world (79) through my grandmother’s lace curtains.

I’m still thinking (80. I’m still…about my own thinking.

ll stand up and speak out every chance I get. (81.

Creating this presentation has caused some of my symptoms to become all too frustratingly apparent to me. It felt as if a glass of cold water was thrown into my face. It took my assistant, my spouse, and I more than 20 hours to put this all together. I wrote it in two days, but the ability to coordinate slides with words, the attention span and focus it took to keep at it, my understanding of how to use my own mouse were all strained and negatively impacted by my symptoms.

Within an increasingly decreasing walls of acting on my purpose I’m still pretty much okay. Outside those walls I need enabling support. As I worked on this into the middle of a few nights I forgot how to type. It was astounding, fear producing, and amazing that I actually lost the ability to type with ten fingers.

I thank MoMA for the opportunity to prove to myself I’m still Richard. I preach a much more secure sounding life than I live. (82)I anxiously await the rest of this program, as I am sure so do you. Again I say The map is not the territory.

I’m still Richard, a whole person living with the symptoms of dementia.

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