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Hello,

Janet Adkins (the first person Dr. Jack Kevorkian (”assisted”) really believed that everyone was going to die who had Alzheimer’s disease. And not just die, like everyone dies. It would be painful,  dehumanizing, something no one should have to live through. It was a death, she believed that should be avoided, if it could be avoided.

She knew it was a fatal disease. So why, she reasoned in her last letter, bother to suffer the prelude when the movements were so awful to live through, and it always ended with pain, suffering, loss of every ounce/inch of humanity and a whimper?

But then again, everyone is going to die who does not have Alzheimer’s disease. Life is a fatal disease/chronic disability/condition!

Is there unbearable pain attached/guaranteed by the diagnosis? Not that anyone has reported, except for others who do not have it and are in psychic pain watching themselves say good-bye to some who is in their minds slipping away. Except for others whose focus groups have told them if you want to raise money for cure research scare the hell into the donors, not out of them, and then all but promise a pill to assure them they won’t go to or through hell - at least not because of their Alzheimer’s disease, because their support and donation now will create a world without Alzheimer’s disease - soon! “We are so close to pharmacologically bringing a part of heaven onto this earth.” they have been telling us for the past twenty years.

There is pain in the hearts and minds of people living with Alzheimer’s disease, but it comes first from without, not from within. There is fear within that comes first from without. There is pain in the hearts and minds of care partners. There is despair about the future. And whence cometh all this pain and suffering? From the disease? Hell NO!

It all starts, not from birth, not from genes, not from between our own ears. It comes first from listening to and watching TV commercials, press releases, relatives, fund raising campaigns, second and third hand reports about what others think/know what is for sure like to live with Alzheimer’s disease.

One organization preaches that folks lose their souls when they are in the later stages of this form of dementia. Have these prophets returned from heaven/hell with a firsthand report? How do we know the condition of anyone’s soul? Apparently, some of those who clearly should know better and are interested in raising funds for research for a cure know for sure. At least sure enough to make a video and show it to lots of folks claiming second hand knowledge of this loss of soul.

A doctor friend of mine just wrote “it’s time to take off the gloves” referring to his own self imposed restraint when responding to a defense of mind/mood altering/smothering drugs given to so many folks living with the symptoms of dementia.

I believe it is time to take off the gloves when addressing the Alzheimer’s myth builders certain claims of a living hell inevitably engulfing those living with the syndrome of Alzheimer’s disease.

We have all been slapped around to long by the myths and stigmas continually promoted by those who should know better, whose personal interests are well served by the consequences of myth making. And they are hitting harder, more often, and damn it with more success. It’s time to tell the other Janet’s, living with the diagnosis, that life, - purposefulness, love, and all the other deeply felt and yearned for human needs are just as alive in the last stages of life/Alzheimer’s/dementia as they were the moment before they heard the words “you have dementia, probably of the Alzheimer’s type” intoned by someone in a white coat who increasingly doesn’t believe what s/he just told you. At least they don’t believe all the myths, stigmas, advice, and pills that come with those words.

I cannot read the minds, hearts, souls of the folks who perpetuate the myths that first caused Janet to consider suicide as a rational answer to the guaranteed pain and suffering that was guaranteed to be her life living with Alzheimer’s disease.

I just don’t understand these fear mongers. Is any cause worth the suffering they are causing/promoting/tearfully announcing? Even if we all believed Alzheimer’s is a disability that can be cured/appreciably slowed down, is it right to knowingly create pain and suffering in some, so some others will not have to experience it?

Damn it. Let’s all stand up and speak out. Let’s name their names, let’s stop donating, let’s stop swallowing whatever they say is best for “us”, let’s replace them. Let’s show the other Janet’s in the world there is a rational, meaningful alternative to ending your life when you receive a diagnosis of probably Alzheimer’s.

It is living your life. Surrounding yourself with an informed, enabling network of care partners. It is believing in yourself. It is ignoring the sentence and conditions others (who for their own reasons) have assigned/defined to you - “a death sentence.” A soul-less, suffering filled existence leading up to not one but two deaths!

Say hello to the “Janets” in your life. Say hello to yourself. Stand up to the blizzard of claimed  breakthroughs, press releases, promises of a better life through chemistry. Speak out! If we all don’t - look who is speaking for us? Look what they are saying? Look at the consequences of their labels, myths, stigmas on people living with the symptoms of dementia and their care partners.

Stand Up! Speak Out! Take off your gloves and let the naked truth speak for itself.

Richard

A friend of mine, and a friend of everyone who lives with the symptoms of dementia, recently presented this at a conference in Belgium. Germany is in the midst of developing dementia-friendly communities. Recently South Korea began a program to educate every one of its citizens (young and old) about dementia. These are the kinds of creative thinking and creative engagements we all need to create and support in our own homes, our own town, and our own country.

Recently my President proclaimed/announced a major step forward in the war against Alzheimer’s disease. Ignoring the fact he still apparently doesn’t grasp the nature of Dementia and it’s many forms, he is forming a committee to write a plan to save our health care system from collapse from the costs associated with the aging of the baby boomer generation (now some are trying to rename it the Alzheimer’s Generation), that is the plan will be written as soon as they find a few dollars to fund the writing of it.

And hands in the audience, please. How many truly believe any plan we write will include, be sensitive to, focus upon the following:

Richard.

Dementia-friendly communities in the society/in Germany

Peter Wißmann

E-Mail: p.wissmann@demenz-support.de
Internet: www.demenz-support.de

Geschäftsführer: Peter Wißmann, Herbert Rösch
Amtsgericht Stuttgart HRB 23057
Sitz der Gesellschaft: Stuttgart
USt.-IdNr. DE 245726688

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What is a dementia friendly community? What does it look like? If you know it, please tell me. I have no definite answer, but I think it’s a good question.

In year 2006 Aktion Demenz has called out to create dementia-friendly communities in Germany. The association Aktion Demenz has resulted from an initiative of the Robert Bosch Foundation. The intention is to look at dementia as an issue that needs to be addressed by the civil society. .

“Dementia is an issue for all members of the society”, that’s the motto. When Aktion Demenz started it had no answer but a question. The question was (and is): How do we transform our villages, cities and communities into better places to live in for people with dementia?

At that time we started we only knew a handful of communities where this question was already being actively addressed by citizens and politicians.

Today we have got a different situation. Under the roof of the concept “Dementia friendly community“hundreds projects have started their work.

This year Aktion Demenz was able for the second time to announce the support program “People with dementia living in the community“. It’s established and funded by the Robert Bosch Foundation. Local projects for a dementia friendly community can get a modest financial support here. About 250 communes and projects have applied and 37 have been awarded a grant. And there are still much more all over in Germany.

Who initiates?

From whom do such local projects start of? There are different approaches:

· The first impulse often comes from professional carers or professional networks.

· Sometimes there are committed citizens who want to do something.

· Sometimes it is the Lord Mayor or another politician recognizing the need to act.

· However, I also know cases in which it was a single person who has taken the first step for example a family member of a person affected by dementia.

Each of these approaches can be successful. But to be honest with you: Sustainable projects depend on a broad alliance of citizens, professionals, politicians and family members etc.

What are activities in the towns and villages?

1. Publicity and awareness raising

Most projects in Germany but also in Belgium or in Austria try to create public awareness in their community. The aims and the objectives of these campaigns are to establish dementia as a topic, but also to focus in people with dementia themselves.

It is crucial to reach those citizens who haven’t come in touch with dementia, yet.

Some Exemplary activities

· Posters and banners all over the city. Motto: In the past, you have helped me, now it’s my turn. We are neighbours.

· Specialized training for police, bank assistants, shop assistants and others. Topic: Understanding dementia.

· Cultural activities like art exhibitions.

· Or a big Dementia Awareness March through the city.

2. Inclusion and social participation

Informing the citizen isn’t enough. What we do need are places and occasions where people with and without dementia can socialise. It is all about social inclusion.

Exemplary activities

exhibitions of art work from people with dementia in public places

• sport activities for and by people with and without dementia
• Public music performances for people with and without dementia
• Some projects address pubs and restaurants in the local community. The objective is to raise awareness about people who seem to be different or to act strange. Are those people welcome in pubs and restaurants? And from our experience the answer is almost always: Yes!

Everybody can do something!

A little town in South Germany, Ettenheim, has come to the conclusion: neither an old nor a person with dementia ought to fall out of the community. The citizens of this village therefore have built up a network of mutual support, and with this aid people with dementia are able to stay in the middle of the community.

3. I speak for myself

All of this is good. Many towns and villages are on their way. But there is still a lot of work to do. My institution, the Demenz Support Stuttgart and other organisations like the Alzheimer’s Associations commit themselves to the aim that people with dementia are encouraged to speak for themselves. What is a dementia friendly community? In Germany we have only just started with this perspective. But I believe: It’s the next task for committed towns and villages to think about ways to involve people with dementia actively in their planning of dementia-friendly communities.

What’s essential?

What is essential if we talk about dementia friendly communities?

1. The dementia-friendly commune must be more than a project managed by professionals.

A few minutes before I said that we need a broad alliance from citizens, professionals, politicians and family members. And I would like to complete: And also from committed people with dementia. All they are indispensable.

2. Not the sick person but the citizen with dementia must be the focus of our perspective.

People with dementia are citizens like every other member of the society! We have to transfer the ideas of the UN-Convention on the Rights of Persons with Disabilities into our countries. We need a change of perspectives!

3. We do need information campaigns and public awareness. However, first of all we need actual inclusion on the spot! There we have to create good ideas!

4.Money is useful, but money is not everything! Many local projects in Germany have shown that you can have a remarkable impact without big sums, as long as other resources are available such as the creativity of the citizens! It is simple, it is creative and it works!

Patients take action on early Alzheimer’s
USA Today chronicles the life of Richard Taylor, July 24th, 2007

Reaching Out `From the Inside Out’
Claudia Feldman writes about Richard Taylor in the Houston Chronicle, May 15, 2008, 5:30PM

If you suspect, smell, think and/or worry about if you might have the early signs of dementia, mild cognitive decline, Alzheimer’s - and you want a doctor to confirm or deny your suspicions because you hope some doctor or researcher might be able to delay, and/or cure you suspicion -  please consider first applying for long term care insurance before you go to the doctor. Begin this process at least a couple of months before you go to the doctor, so you can apply for three or four long term insurance polices and complete the application process before you go to the doctor. You will probably be rejected by some of them and they won’t tell you why so apply for a bunch of them and then you decide which one(s) you want to accept.

Insurance is a bet. You bet you might get something and need a certain type of insurance. They bet you won’t get it and will just get to keep your premium. Most long term care applications ask if you have ever been told by a physician you have dementia? If you have ever taken any medication for Alzheimer’s or dementia? Just the word “dementia” can be a reason for you to be rejected for this insurance. Just a musing on your chart by your doctor “check to see if he/she may or or may not have some form of dementia” is a reason to scare most all long term care insurers away from you.

In reality they are in business to insure against things that won’t happen, or if they do,  they won’t qualify under your policy. This is not a savings plan for you, this is a profit plan for them. They have figured out ways to insure themselves against the very risks they claim they are protecting you from. They sometimes require that you not be covered for something for which you bought the insurance in the first place.

This is not legal advice. Don’t seek to defraud your prospective insurance agent. However, realize realize they made up the rules. Follow the rules, but wait until you are good and most important ready.

~Richard

A friend of mine is having increasing difficulty getting her loved one to take a shower (I think he is in the mid stages of dementia). Without getting into a deep (and useless) psychological investigation of his early years, I have been asking friends of mine who are living with dementia for ideas on how to enable people with dementia to take their own showers, assisted as needed by a caregivers.

Here are some of our best ideas. Remember these all came from people who are living with the symptoms of dementia:

Arrange for him take a shower while seated on a familiar and chair?  So what if over time the chair gets ruined? Does it really matter?

Encourage him to wear his underwear? If you are helping him you wear yours too.

Ask if he wants to wear his shoes?

Start off with a quick rinse, and work up to a full shower.

Take a cane or walker into the shower, even if he really doesn’t use it all the time?

Put up railings in the shower if it will make you feel safer taking a shower with him.

Ask him to wash you! Tell him you need help showering, too!

Sing in the shower, either to him or with him?

Play favorite songs or music before you get into the shower.

Initiate some form(s) of intimate contact in the shower (that was the most polite way I could come up with for an idea many, many people suggested and probably hoped for in their own showers).

Make up a game about how fast he can shower and time him?

Prepare and eat a snack he likes or drinking something he enjoys while in the shower?

Watching TV or listening to a favorite piece of music while in the shower?

Video tape the two of you taking a shower and show it to him?

I am not the shower expert, these are just some ideas to distract him from whatever it is he fears. My general impression is carers are too focused on us showering-sometimes every day! If it is a medical necessity - we need to wash off fluids and substances we have involuntarily passed - and you cannot do it with a sponge bath in bed, then I guess immediate showers are a necessity. Otherwise - let’s all try to make them more fun and less functional.

~Richard

If only I were a nude mouse I wouldn’t expect anyone to listen to what I had to say about my various symptoms. If only I were a nude mouse I wouldn’t have to engage the symptoms of dementia, except when it came time for me to remember not to get shocked, or which lever to push to eat!

However,  I’m not a nude mouse! I’m a whole person!

With the recent demise of the second in what was hyped to be a pipeline full of new approaches to delay the as yet to be chronicled progress of dementia I’m even more pumped-up about the disproportional attention being paid by the Alzheimer’s Study group to psycho social research (Newt Gingrich and Sandra Day O’Connor, et. al). There seems little interest in including a BIG chunk of ear marked money for psycho social research in the new “National Strategy.”

Would you please offer your .02 cents worth of what the National Strategy for Congress should be/include/fund? And send it to contact@alzstudygrop.org.

~Richard

Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really don’t know what to say. I’m not them. I don’t live with or in them. I’m still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And if we don’t know sure for sure, we should ask, we should listen, and we should just be.

Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.” “I’ll be back in five or ten minutes”

Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by other’s attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there any more. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often.

Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really doesn’t need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It’s how we decided to react emotionally to the words we ourselves utter, think about, and tell each other.

We all need to keep constantly reminding our selves and each other of this. We need to enable everyone to be themselves, to understand themselves, to love and to feel loved.  The medical community, society, culture, history are all trying to convince us who we are, and we aren’t - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer.

Perhaps the right answer for me is the wrong way to frame it. I need, we need to find a right answer, the right thing to say for us. We need to stop looking for right and start talking to each other about what meets my needs, your needs, our needs.

~Richard

I just read that Alzheimer’s disease has moved up the list of the causes of death of Americans.  It should not be news, nor a surprise that more and more and more people are dying because of this or that consequence of some form of dementia. More and more people are reaching the ages during which the probability of acquiring one or more of the diseases of dementia rapidly increases. What should be news is how little is being done to research how to add value to their lives prior to their deaths and after their diagnosis. What should be a surprise is how little research and research dollars are earmarked for psycho social research into the impact of the disease on individuals and their families.

We need another pipeline of support, not more pills, not more maybe promises, not more of more, we need different. We need to understand how to communicate with individuals in the later stages of the disease. We need to understand how to adjust and support someone in cognitive decline in ways which enable them to still feel they are living an accomplished and accomplishing life. They still need to find/have a clear sense of purpose and means to achieve it. They need to maintain their dignity, self worth, sense of today, and privacy.

We need to understand people are still home….even though others seldom knock on our doors because we either don’t answer, or answer in ways others don’t understand. When we forget your name does that mean we have forgotten you? We no longer have a need to give and receive love? When we become confused, when we wander, when we become agitated - these are all your labels, not ours. What can you do to support us and make us feel good about ourselves? You already seem to know what you can do to us to make yourselves feel good about us - drugs, secure facilities, restraints, and did I mention drugs!

We need more research, more research dollars to fill a psycho social pipeline of information, strategies, insights, support, enabling behaviors. It’s not dying that is the issue for me; it’s the living until then! The solution to the dementia problem is not prevention or a cure, the solution is learning how to successfully, to fully live with the process and consequences of relatively declining cognitive skills. We know, we have studied these issues even less than we know about the physiological processes - and we know so little about those processes, even after 100 years of researching the brain.

It’s not that more and more people are dying of the disease, it’s that more and more people are living with the disease. Words like cure, eliminate, halt, reverse, delay serve the ends of fund raisers, self interested parties, and well intended supports, but not people with dementia.

Why do so many of us have to die before how we live becomes important to politicians, researchers, professionals? Even if the baby boom didn’t exist, even if more people weren’t dying this year than last of the diseases of dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring out how to live with it more important than dreaming of a world without Alzheimer’s? A world without hunger? A world without war? All are wonderful dreams, in the mean time how can the lives of the people and families living with Alzheimer’s/dementia, the hungry/starving people, the collateral losses of human life in war - how can these people’s problems be researched, supported, lessened? Why must we wait for the dream to be a reality? Most of us now alive will be dead. Those who are then alive when the cures come around, if they come around will still live with the wounds of dementia, hunger, and war. What’s the plan for researching and improving their lives?

Our needs today take a back seat in the minds, dollars, budgets and research of our champions, organizations who use our disease on their letter heads. Research for a cure, a delay, a slow down doesn’t just take precedence over research for a more fulfilled life - bench research/drug company research (as my Grand daughter would say) “RULES”! The suffering, the destroyed families, the damaged caregivers, the folks who die because of the disease - these real and now living human beings apparently must die in larger and larger numbers to catch the attention of everyone so they can try harder, spend more. Not to meet the needs of living people, but to meet the yet to be experienced needs of people, many of whom are yet to be born. What has happened to our priorities?  Our humanity? Our love and respect for life, not our fear of death.

Richard

Well, last night I had the strangest dream. I dreamed the leaders of the Alzheimer’s Associations, Researchers, Congressional Leaders, and a host of other professionals all sat down and agreed to sit around the table until they came to some consensus on how to lead this Nation through the greatest public health crisis of the first half of the 21st century.

I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:

The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,

Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease -

Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!

Richard