Purple cities alliance
As the holidays approach so does the desire to bring the whole family together to celebrate. If you have a family member in a nursing home or assisted living and they have dementia, please think very hard about taking them home to celebrate. Some people do just fine but for others its very frightening. There may be too much noise, kids running around, people talking all at once, people asking them questions they don't know how to answer and maybe they don't even recognize anyone!
While we always want to include all our loved ones, many people with dementia aren't even aware that it is a holiday. You may find that just visiting them in their familiar surroundings will be a better experience for all involved. Join them for a meal at their home over the holidays, bring them a favorite dish and share it with them. Don't be upset if they don't know its Christmas, that won't change the pleasure they will get from being with you. Don't ask them if they remember things, but tell them about your memories because that may trigger theirs. Most of all enjoy the holidays and don't stress!
Take a moment to think about your neighbors who may be all alone during the holiday season, this is the time when people feel the lonliest and depression is a real problem. Be the one to knock on their door with some Christmas cookies and wish them a good holiday! Let's use the good feelings we have at Christmas and reach out to those we usually overlook.
Be good to yourselves as well. Remember this season doesn't have to be about the perfect tree or decorations, it doesn't have to be about the most expensive gift. It needs to be about joy, friendship, good will and love. Relax and enjoy it! Sing carols, eat cookies, laugh! Its Christmastime!
Why do people think that someone with dementia is "out of it", "won't notice if I never visit", "can't tell that I am laughing at them"
Why do people think that it doesn't matter how you approach a person with dementia because they are not with it!
I recently heard that when a first responder was approached with the possibility of getting dementia training to enable him to take care of someone with dementia, the first responder said, "I don't need that, they are out of it"...So I assume this first responder believes that a person with dementia would not be afraid, or become aggressive because of fear. That they don't recognize the expression on your face when you think they are "crazy" and not worth worrying about.
This is what we are about! This is what we are here to change!
People with dementia are as deserving of consideration and respect as anyone else, In an emergency situation they will require a little more compassion and kindness because they do recognize something to fear even if they can't respond the way the rest of us would.
If you are a first responder please get some training. If know a first responder, please encourage them to get some training about the best ways to approach a confused person. Please learn about the diseases that cause dementia and don't be so off handed about it...chances are you will one day be walking in their shoes! Many of us will find ourselves with one of the diseases that cause dementia. That doesn't change who we are or what we have done in our lives, it changes how other people treat us.
If you haven't already had our Purple Cities training, take 15 minutes and get it! Or go get it somewhere else. There are resources everywhere to learn what everyone needs to know. PLEASE, help us make the world a safe, comfortable place for people with dementia. Stop laughing, dementia is not a joke!
A woman is doing her shopping, suddenly she doesn’t quite know where she is, and everything looks strange. She can’t even remember how she got there, or how to get home. She becomes upset, she walks to the front of the store and out the door with a basket of items unpaid for. The store employee chases her, accuses her of stealing. She is frightened now, she has no idea what this man is talking about. He is calling the police, terror is coursing through her. She knows this is a nightmare but she can’t seem to wake up! People are all around her, they look angry. Then one person comes slowly toward her, smiling gently, he approaches from the front, extends his hand to shake hers and introduces himself. He says he is there to help and that everything will be okay. He asks everyone to please back away and give them some space. He assures the store employee that he will get the basket but please just give him a few minutes. He then turns back to the woman and again tells her his name and this time she responds by telling him her name. She is calming down and things are beginning to clear in her mind. He ask her if he can have the basket so the store employee can take it back inside. She is surprised to find it in her hand. The man invites her to sit on the bench and they begin having a conversation about the weather, their families, and their homes. The police have arrived but they don’t approach, they can see that the man knows what to do. After a short time the man has found out how to contact her family, and they come to the store to get her. The outcome is a good one. Without that one person, this could have been very different. The woman might have gotten lost and wandered far away from her home and family, the police might have arrested her for stealing, but one person knew what to do and changed the outcome.
Do you want to be that one person? It takes about fifteen minutes to do the Purple Cities Training and when you are finished you will know how to recognize someone having confusion, someone who needs help. You can be the person who changes the situation from one of terror to calm and safe.
It’s hard to imagine how it feels to suddenly be lost in a familiar place. It’s hard to imagine how it feels to not understand what used to be a normal everyday experience. But you can be that one person who knows how to approach, what to say and what not to say.
Join The Purple Cities Alliance and learn how to make your community a safe place for your neighbors who have dementia. One day it could be your family member who needs help…or maybe even you!
Be the one! Training is quick, easy and free! We will come to your club meeting, staff meeting, church group…anywhere. Just go to our website and click the contact us!
On March 19, 2016 people all over the world will be hosting events to promote awareness of dementia and those who are dealing with it. In reality we are all dealing with dementia in some way, it could be that we are the ones who have been diagnosed with a form of dementia and are struggling with all that means. Struggling to live a normal life while we wait for it take away our memories and abilities a little at a time. Or maybe we are the spouse of someone who is trying to live with it, and we are forced to watch them suffer losses and struggle to hold onto themselves for as long as possible. Maybe we have a friend or a neighbor that is dealing with it, or we have been on line in the grocery store behind someone with it. No matter where, who or how, all of us, every one of us is affected by dementia. Many of us will one day face that frightening future ourselves.
Last year as I attended the Alzheimer's Walk I was suddenly aware of how many people who stood beside me years ago, were now living with dementia themselves.
This event, World Rocks Against Dementia, is one way to promote awareness. Knoxville is working on plans to join this event and details will be posted as soon as possible. Please look into bringing this event to your own communities. It doesn't have to be a huge rock concert, it can be anything at all. Just do something on March 19 to show your support for people dealing with dementia.
The story of life with dementia is being told by the people who are living it. Finally, we hear about this from the insiders. Not the physicians, nurses, aides or caregivers, we have heard their side. Not from the family, friends and loved ones, we know their stories. No, finally we hear about it from people like Norm MacNamara, Harry Urban, Kate Swaffer, Rick Phelps, the late Dr Richard Taylor and many others. Not afraid of the stigma, not concerned about what people will think, they bravely tell the story of day to day life with dementia. We now have a better understanding of what its like to hear the diagnosis and begin to make decisions for the time when they won't be able to make them anymore. We have listened to the horrors they live with daily. The night terrors, hallucinations, the losses they face as the disease takes its toll. And still through the heartbreak these brave people tell their stories. Their only goal is to help others understand what its like to go from a normal happy, healthy life to one riddled with fear of the future. Their brave fight to continue as long as possible working to bring awareness to a world that doesn't want to know!
Because of these people the world is becoming aware. More and more communities are joining the movement to be more inclusive of people with dementia. More programs are being started, more training and education is available and being utilized. Because a handful of people decided not to retreat to the shadows and instead brought their fight to the forefront we are finally learning how to better live with dementia. None of us know if or when this will be us, many of us working on dementia awareness today, will be the ones who need help in the future.
We all hope for a cure. We all want the research to continue. However we need to work on ways to help those already dealing with dementia. We need to make the world a safer, warmer more inclusive place.
Thank you to those brave souls who have blazed this trail. Thank to everyone working to make this vision a reality.
Keep on talking about it! Have the conversation with anyone and everyone. Let's make this work!
This week Riverside, CA declared itself a Purple City! Their Task Force is excited to make their city Dementia Friendly and raise awareness throughout their community. Surrounding communities are preparing to join them soon.
Seminole, FL is poised to become a Purple City, having begun to put together a training program and their Task Force is also excited to begin the process. We are so very proud to see this movement spreading, We have been contacted by several groups preparing to join us. Purple Cities Alliance has made all our materials available to any group wishing to join us. There is never any fees for using our educational materials, or our logo which was designed to be adapted to other cities.
We also learned this week, that our friend and founder of the Purple Angel Global Campaign, Norrms MacNamara has announced his retirement following the world wide Rock Against Dementia Concerts on March 19,2016. So now we have a new goal! Let's put together concerts in our Purple Cities and our soon to be Purple Cities. It can be local Music Groups or big name artists if you can get them but let's all do something to raise awareness and honor our friend Norm!
We have so many opportunities to raise awareness and grow our Purple Cities Alliance. Let's do this!
Purple Cities is completely volunteer based. We have no paid staff. We hold no fundraisers. We rely completely on the kindness of people who give freely of their time and resources to create a community that is prepared to lend a hand to our neighbors with dementia.
We give the basic information at our trainings, which can be 15 minutes long or an hour depending on the requirements of the group. The materials we use are available on the website for anyone to download and use in order to spread our message.
On October 20, 2015 at 8:30 AM our Task Force will meet at Renaissance Terrace for our first meeting since last spring. At this time we will once again "Train the Trainers". The more trainers in the community the more people we can reach! If you are interested in joining us, please come to this meeting. Everyone is welcome! We need you!
There are more and more inquiries from around the country asking how to get started. During the first meetings where we began building what would become Purple Cities Alliance, we had such complicated, huge plans but we quickly realized that simplicity was our best advantage. The idea was to spread awareness, to give as many people as possible a small amount of knowledge about dementia, knowing that once we open the doors people would seek further information. Our first and most important goal was to help the general public understand what it is like for our neighbors who are living with dementia and are still living and working in the community. We saw first hand how many of our friends and advocates who stood with us a few years ago were now living with dementia themselves. We know how many of our friends and families are living with a loved one who is dealing with dementia. What we want is for everyone to understand, welcome and support these people. To understand the determination to live every day to the fullest in spite of a disease that is unrelenting.
If a neighbor has cancer or heart disease we all rally around them, encourage them, offer to help. If a neighbor has a disease that brings dementia we back away, we watch them to see how "bad" it is now, we abandon them and their families and we tell ourselves that they wouldn't want us to see them "that way". The truth is WE don't want to see them that way, we are afraid and we don't know what to do or say. In a Purple City people understand and support their neighbors, we learn how to respond when someone is in a frightening situation due to dementia. We know how to approach, what to say, where to look for help. We are proud to know that there are so many other communities who are ready to make the change and become dementia friendly. We also hope that the simplicity of Purple Cities Alliance, the grass roots, volunteer based initiative which has no money or fundraising attached to it but is simply dedicated to creating a better world for people with dementia, will help those communities to achieve it .
Everything we have done is available to anyone who wants to duplicate it. Our education page and powerpoint can be used by anyone who wants them. The logo we designed is easily adapted to show another city and state. We cannot sponsor any other group since we have no funds but we can support them. We will help in anyway we can. This is a surprisingly easy method to acheive a dementia friendly community. It starts with one or two or ten people who have a passion to make it happen and then it grows! We can do this everywhere! Let's start talking!
From our friend Norm MacNamara:
Pushing My Luck
So, I said to Elaine, we drive up next Tuesday night, stay over, speak, then stay Wednesday night, travel and , speak, stay over and then speak in Birmingham??
NOOOOOOOOO !!!!!! Elaine said, She wanted to scream, I could tell, but she didn’t, for the 11th time she tried to explain to me what we are doing next week, it was right there, written in front of me on a piece of paper, and still I couldn’t see it or understand it.
What can you see that I can’t!! I demanded!! “I have dementia, I am not stupid!! I added quickly, please don’t patronise me. “I`m not “Elaine says, it’s just that you’re getting confused.
Well, talk about a red rag to a bull??
CONFUSED?? CONFUSED?? I shouted!! How dare you!! I can quite plainly see what that says and I cannot understand why you’re having trouble reading it properly. I was shaking with frustration and beginning to get really upset, my mind was in torment as the information on this piece of paper jumped out at me and made total sense to me, Then I glanced very quickly at Elaine, wanting and needing her to say “yes your right darling” but she didn’t, instead, she just put her arms around me, told me not to worry about it and we would look at it later. She had distracted me and I went on with my business on the computer, I started to calm down, my breathing went back to normal, and I could feel my face cool down as it probably turned from Crimson red to its normal colour. Half an hour later, I looked at the same piece of paper, and as you may have guessed by now, it was me who WAS confused, certainly not Elaine. What I saw then and what I was looking at now were two totally different things, to say I HATE this disease is the Understatement of the year.
This disease is not just about forgetting things, but in certain types of dementia , like mine, Lewy body’s, it can make you see things that aren’t there, read writing that isn’t what’s written, and talk about things that may never have happened. I am getting progressively worse, and that’s a fact. I am coming up to my 8th year now and for the last few months I have felt as if I am pushing my luck, but PUSH IT I will , for as long as possible, and when I run out of luck I hope you, my dear friends, carry on pushing the same luck until we win
Much love and tons of respect to all, Norrms and a very understanding “ANGEL” Elaine
Diagnosed with Dementia aged just 50 yrs old,
7 yrs ago now
Purple Cities Alliance is the result of work that was begun in Torbay England by a man named Norm MacNamera. Norm's life was as ordinary as anyone else's. He worked, spent time with his family, enjoyed his life until the day he heard the diagnosis of Alzheimer's Disease (a few years later the diagnosis would be revised to Lewey Body). As one might imagine, in that moment the world stood still. How could this be happening to him? He realized he had some cognition issues but Alzheimers? He was only 50 years old and that is a disease for old people not someone who was only 50 years old. It was true, he had dementia and he and his family would have to deal with that.
Daily life became more challenging. Things that were simple and routine became strange and frightening at times, with no warning at all he would be lost in his home town, confused about what was expected of him and afraid of the people around him. He had dementia. He realized that nobody in his home town understood what he was dealing with. And so he began, just Norm and his wife Elaine, going from retailer to retailer, visiting restaurants, libraries, anywhere people would gather. He told the owners, managers and staff what he was going through, how they could help people like him simply by knowing a little bit about dementia. People in Torbay listened. The Torbay Dementia Action Alliance was formed. Within a few years Norm was spreading the word all over Britain. He met with the Prime Minister and members of Parliament and they listened too. The UK began working on dementia awareness and leading the rest of the world toward understanding people with dementia.
The movement spread across Europe and to Australia, Asia, India, Canada and the USA.
If one man with dementia could make such an impact on the world, how much more can we do when we all join with him and follow his lead.
Purple Cities Alliance has begun with Knoxville/Knox County TN. We hope other cities and communities across the country will join us and begin working on creating places where people with dementia can live happily and safely, surrounded by compassionate, understanding neighbors prepared to help when confusion becomes a problem.
Purple Cities Alliance was formed to help educate people about how to respond to someone with dementia. We are totally volunteer based and we do not accept donations. We are a group of people who just want to help change the way people with dementia are viewed and responded to.
One example that Norm shared with us recently will illustrate how this little bit of knowledge can change everything. There was a woman at the grocery store doing her shopping, everything was okay until she got to the check out. She became very upset, was unable to complete her purchase, suddenly lost and afraid, she didn't know where she lived. A young employee had recently completed his short training session and immediately recognized what was happening. He intervened, gently inviting the woman to come sit with him on a bench for a few minutes. His calm approach soothed her and once they were seated and away from everyone else he was able to find out who he could call to come for her. This incident could have had a far different outcome, if the woman panicked and left the store alone, she might have been lost or hurt. Instead her family came to pick her up and she went home safely. This situation and others like it are happening every day all over the world. More and more people are dealing with dementia and many of them are unaware of it.
Purple Cities goal is to give a lot of people just a little knowledge about dementia and how to help. For those who want more information we have a resource page on our website. Our one page handout or our powerpoint presentation (both available for download on our website) will give people some do's and don'ts for dealing with someone who has dementia.
If you are a member of an organization or business that would like to join Purple Cities please fill out the form on our website. Training can be done online or volunteers can come to your meetings and do the training there. We are also available to train members of your organization to do the training for the rest of your group.
For more information email firstname.lastname@example.org or submit the contact us form on our website.
Please help us make the world a safer place for people with dementia.