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DEMENTIA

Clear Evidence Showing That The Reasons For Treating Alzheimer's Patients With Respect And Dignity Go Beyond Simple Human Morals

(Source: University of Iowa News Release)

"What this research suggests is that we need to start setting a scientifically informed standard of care for patients with memory disorders. Here is clear evidence showing that the reasons for treating Alzheimer's patients with respect and dignity go beyond simple human morals."

Informed Caregivers Can Improve Quality Of Life Of Alzheimer's Residents

(Source: McKnight’s)

Why are people who are diagnosed with Alzheimer's, the seventh leading cause of death in the United States, not being cared for the way they should be? We wanted to find a way to improve the quality of life ("QoL") of the resident with Alzheimer's living with a debilitating disease.  This idea formed the basis of a research study at Signature HealthCARE LLC that revealed a direct correlation between the quality of life for individuals diagnosed with Alzheimer's disease and their caregivers.

Alzheimer's disease (AD) is a silent killer that gradually destroys a person's memory, ability to learn and communicate, and the ability to carry out daily activities. As AD progresses, individuals can experience other weakening side effects, including anxiety, irritation, and possible hallucinations. AD patients experience side effects that ultimately impact their quality of life, which is defined as being in a state of complete physical, mental and social well-being.

The question that lingered throughout this research study was whether the implementation of a training model for caregivers positively impacts the quality of life of older adults who have been diagnosed with AD and reside in a nursing home. To test this question, a training model was designed to promote a positive change in the caregiver, while also increasing the knowledge of the caregiver and improving the clinical application of care to the resident with dementia…

Once the research was completed and analyzed, the team determined that the quality of life for Alzheimer's residents had improved, and was directly related to the caregiver and resident relationship… This study also proved that the previously assumed notion that individuals with AD were not able to rate their own quality of life was incorrect. These individuals were able to rate their own quality of life well into the progression of the disease…

The resident's quality of life is about more than the resident participating in activities. Rather, it is about being in a state of complete physical, mental and social well-being…  MORE

Dementia Should Be No Barrier To A Good Quality Of Life

(Source:  Medical News Today)

 

Only 13 per cent of people believe a person with dementia can have a good quality of life at all stages of their condition according to Alzheimer's Society research released today (Thursday, 15 April).  However a new report by the charity found a better quality of life is possible for people with a dementia diagnosis. It highlights simple things such as having someone to talk to or being able to practice a faith that can have a huge impact.

My Name is Not Dementia, draws on the views of people with dementia including author Sir Terry Pratchett who has written a foreword for the report. It aims to break down misconceptions by showing a person's identity does not disappear because of a dementia diagnosis.

Research also shows more than half (54%) of people think a diagnosis of dementia would have a bigger impact on their quality of life in later life than cancer (19%) or a physical disability (16%). Over half of people (52%) believe dementia has a stigma attached to it.

Award winning author Sir Terry Pratchett who has posterior cortical atrophy, a rare form of dementia, said, 'Dementia is undoubtedly a cruel and debilitating condition. However a diagnosis does not strip a person of their identity. That person still has a voice and they deserve to be heard. Dementia requires not just care but also understanding. There is an opportunity here to give the lie to some of the clichés of care. We have to learn to be good at it.'

Ruth Sutherland, Acting Chief Executive of Alzheimer's Society, said, 'All too often dementia is seen as an insurmountable barrier and a diagnosis is seen as a death sentence. This doesn't have to be the case. By listening to people living with the condition, as this report does, we can better understand what is important to them and how they would like to live their lives. We need to learn to see the person not just the dementia.'  MORE

More With Dementia Wander From Home

(Source: NY Times)

“It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said…  Searching for them often also means learning a patient’s life story as well, including what sort of work they did, where they went to school and whether they fought in war. Because Alzheimer’s disease, the leading cause of dementia, works backward, destroying the most recent memories first, wanderers are often traveling in time as well as space.  MORE

Close your eyes for a moment and imagine spending the rest of your life surrounded by a thick, towering glass wall. You can see the people around you but you can’t understand what their saying. You try to speak out and tell them you’re scared and feel like you’re going crazy but you can’t remember the words even though you still feel the emotional pain.  Months and even years go by and nothing has changed except the people outside no longer bother to look at you. Even your children give you an emotionless stare implying you’re probably already dead but your body just doesn’t know it yet.

Can you think of anything more horrifying? Can you imagine anyone living such a hopeless and frightening existence? There are thousands living this nightmare everyday – they’re severely-impaired dementia patients! They have lost their ability to communicate, but they still hear us, they just can’t answer back. How many times do you think a dementia patient has heard, “Don’t worry your mother doesn’t understand a darn thing we’re saying.” “There is no one home upstairs.” Then they look over at mother and she is trembling and crying uncontrollably. She wants to tell them she is aware but her brain won’t allow her to.

Judy Berry lived this experience when her mother was stricken with dementia. Judy’s mother was labeled as an “aggressive-behavior” patient because she would trip caregivers and patients when they walked by. In 7 years her mom was thrown out of 12 separate facilities because of her behavior. She spent her last year of life tied up to a chair and drugged into oblivion to keep her compliant. During this period of time, Judy wasn’t able to find a facility that could make a positive difference in her mother’s life because they all thought her mom was irretrievably lost to her illness, and they would only provide custodial care to keep her clean and fed.

At 55 years of age Judy Berry gave up a successful career and made a lifelong commitment to change the Face of Dementia Care in our society and to be an advocate for all seniors with dementia in a quest to maintain their Basic Human Rights to Dignity, Choice and Quality of Life until death. With a handful of skillfully trained and experienced health care workers and a modest savings account, Judy took the first step in fulfilling her promise and opened Lakeview Ranch for Specialized Dementia Care.

These are Judy’s words, “With the help of 15 seasoned health care workers I started this project 8 years ago. The Lakeview Ranch Model of Specialized Dementia Care has proven that these unspoken and unmet needs are the underlying cause of most challenging and aggressive behavior and the #1 reason for all the rampant unnecessary hospitalizations and overmedication that has sent healthcare costs spiraling out of control to say nothing of robbing our seniors of the dignity and quality of life they so deserve.”

 The Lakeview Ranch Model of Specialized Dementia Care gives her residents the tender-loving care she wished for her mother. Right now there are 80 caregivers for 30 dementia care residents. The care is intensive, very personal and immediate.  With the appropriate care, and attention from the caregivers the aggressive behavior begins to fade away because ALL of the resident’s needs are being met, especially the emotional ones. “These patients are really scared and confused because they don’t know what is wrong with them. Once we gain their trust and develop a bonding relationship they begin to respond to us positively in a lot of ways,” said Judy Berry.  MORE…

 

To learn more about Judy Berry’s work please Lakeview Ranch.  You may also learn more about their foundation, the Dementia Care FoundationMore

 

 

Hats off to Anne Basting for this FABULOUS blog post – with response by Richard Taylor.  It’s time to wake up folks!!!

A blast from 1983

(Source:  by Anne Basting, forgetmemory.org)

This … cover of Time Magazine gave me vertigo.  I was spinning backwards several decades to a story in the early 80s, that used nearly the same catastrophic language.  In the 80s, Alzheimer’s was just coming into public parlance.  And with the shock, the most predominant image was of the “fade”, the person we know/knew is half there and slowly fading into oblivion…

We don’t do this here.  We have walks for the CURE.  We have add campaigns that feature advocates, not people diagnosed.  We rely on the tragedy of the disease to fuel donations for medical research.  We don’t spend enough on ANY research, medical or social.  We are making the whole thing WORSE.  

Pushing for medical cure is fine.  We should.  But it needs to be matched by an equal push for the cultural cure at the same time.  Which means we can no longer stop at the “fade.”  People are living with the symptoms of dementia and Alzheimer’s for 15 years!  If we can’t SEE them, how can we properly CARE FOR THEM? 

Response from Richard Taylor

…Don’t we each and all have a moral responsibility to support others who cann’t fully support themselves? We support children because they can’t always do everything for themselves. We support elders who can afford to pay for others to do somethings for them that they cann’t do for themselves. For the rest of the folks living with dementia we offer a bed in a nursing home in which they can deal with their own slipping cognitive abilities and memories, while the medical community hovers over them taking care of a body that doesn’t need nursing home type taking care of, and ignoring the mind that does require our attention and support.

Forget memory? Hell we are trying to forget people with dementia, we are trying to forget our own futures, we are trying to forget others and take care of ourselves. Whales, elephants, dogs, dolphins, wolves, and the list goes on…all take better care of each other – especially as they grow old – than do many many human beings. Is it time for us to regress, rather than “progress?” I’m not as sure of that answer as I once was….  READ WHOLE BLOG HERE

Alzheimer's Disease Health Scare Experiment Reactions

The Doctors try to fight back tears as they react to the powerful images from Dr. Sears’ Alzheimers disease experiment

(Source:  The Doctors)

Alzheimer's disease, the seventh-leading cause of death in the United States, is an irreversible, progressive brain disease that slowly destroys memory and thinking skills. Symptoms often begin to appear after age 60 and can make performing even the simplest of tasks difficult. It is the most common cause of dementia among the elderly, with one in 10 men, and one in six women being at risk for Alzheimer's.

Pediatrician Dr. Jim Sears' grandfather suffered from the disease, so in an effort to better understand it, Dr. Sears undergoes an unconventional experiment using the Second Wind Dreams Virtual Dementia Tour.

WATCH THESE!

See how even the simplest tasks become extremely difficult for someone with Alzheimer's.

The Doctors try to fight back tears as they react to the powerful images from Dr. Sears' experiment.

Alzheimer's and Aging:  This Fall, First Steps toward a Statewide Plan in Wisconsin

(Source:  Helen Bader Foundation)


What will Alzheimer's care look like in Wisconsin in 2020? In November, the Helen Bader Foundation is launching a yearlong statewide listening tour to help identify concerns of professionals, family members, and others who face the impact of the disease on a daily basis.  At the state level, there is currently no central plan for approaching the disease's many facets, from diagnosis to dementia-friendly housing to its financial impact on families. The ultimate goal is to inform planners about what's already working in the state, and create a framework for the State of Wisconsin's approach to a disease. Over the next decade, the disease is expected to reach more and more families as the Baby Boom generation enters the ranks of older adults.

The listening tour is being held in conjunction with the Wisconsin Department of Health Services and the Planning Council for Health and Human Services. Titled "A Hand in the Plan: Shaping Wisconsin's Approach to Alzheimer's," the tour features engaging guest speakers who will share their perspective on the disease.  The talks will be followed by a moderated discussion on what the state can do about the issue for all those it affects. The Department of Health is using a two-year, $145,000 grant to lead the planning.  A new online survey is now available to help Wisconsinites share their perspective on the condition, with segments added monthly to reflect the topics of the discussion sessions.  Go to planningcouncil.org to start the survey.

The state Office on Aging is developing a state plan to address Alzheimer’s disease. The Committee for a Wisconsin Response to Dementia is charged with developing a set of implementable recommendations to expand current resources, make effective service and support programs widely available, enact legislative changes for systems improvements, and identify sources of funding to embed the changes in the system permanently. The state Office on Aging, the Helen Bader Foundation, and the Planning Council for Health and Human Services seek your input on the major topics around Alzheimer’s disease. Outcomes from this series of surveys will be used by the Committee as they draft Wisconsin’s plan to address Alzheimer’s disease.  MORE HERE  

Publicity About Alzheimer's Has Led To Confusion For Some: Many Ask Is It Alzheimer's or Dementia?

(Source:  by Carol Bradley Bursack, Editor-in-Chief, eldercarelink.com)

Alzheimer's activists have been educating the public about Alzheimer's disease and encouraging research to prevent and treat the disease. This activism has resulted in substantial publicity about Alzheimer's. However, this same publicity has lead to some confusion among people who ask about differences between Alzheimer's and dementia. What many don't understand is that Alzheimer's disease is a type of dementia.

Hindsight tells me that my mother-in-law, Alice, was already suffering from dementia while she was the primary caregiver of my very ill father-in-law, Milton. I still remember one of the times when I was keeping Milton company while Alice drove off to the grocery store. Milton and I were having a good time, at least as good a time as one can when pending death is the third presence in the room. We knew we were "closing up shop," as we called it. During these visits, we talked of many things and cemented our already good relationship.

However, Alice took so long running her errand that particular day that we both began to worry. Eventually she came home, but she told me she had gotten lost on the way. Alice had gone to a nearby grocery store which she had frequented weekly for decades. I was puzzled, but glad she was okay, and didn't think too much of the situation as I was on my way to see one more of the many elders under my care, and needed to do this before I picked up my sons at school…

Now, it's different. Today, when people ask me, "Is it Alzheimer's or dementia?" I not only tell them that Alzheimer's is is dementia, I tell them an early diagnosis can be vital. Now, a diagnosis as early as symptoms appear could mean, for some people, months or even years of a better quality of life than they would have without treatment.

If it's dementia of another type, there may be something that can help, or there may not be. The only way to find out is to get a diagnosis to determine what type of dementia is present and go with the advice of a doctor trained in treating dementia.

Don't let that window of opportunity close while you wonder. Take advantage of the ever growing bank of knowledge and be proactive. It could make a world of difference to the people with the disease and their families.  READ ARTICLE HERE  

(Source:  By Angil Tarach-Ritchey, Alzheimer's Reading Room)

I recently became friends with a wonderful man named Norms. We aren't face to face, meet for coffee kind of friends, but we are friends, nonetheless. We are current day pen pals, meaning we write to each other in emails, and messages.....  Norm has been diagnosed with Early Onset Alzheimer's Disease.  Norm is 53 years old, and lives in the UK.  He, like Richard Taylor, is brave enough to share with the world, what it's like living with Alzheimer's Disease.  He also is a strong voice as an advocate, an author and speaker, just like Richard, and many others.

I feel a special privilege to be friends with these gentlemen, and honored by the comfort Norm feels, sharing his thoughts, fears, and accomplishments, with me.  I am learning a lot about Alzheimer's through Norm's and Richard's perspective.  I have always known that the best way to provide care is through an empathetic perspective, and they allow me and all of you to be in their shoes, being diagnosed with Early Onset Alzheimer's, and what it's like living with Alzheimer's, every day.

I asked Norm if I could share some of what he shares with me, because I would never disrespect him or his privacy.  He has been gracious enough to allow me to share.  Today I am sharing a poem Norman McNamara, who likes to be called Norms by his friends, shared with me early in our communication.  It's called "Frightened Little Boy".  The words Norms has written is a very telling tale of life with Alzheimer's.  My hope is it causes everyone who reads it to gain empathy when meeting, treating, or caring for a person with Alzheimer's.

Frightened Little Boy

As I tell my tale of Alzheimer`s, Through smiles and heartfelt joy,

When really, somewhere deep inside I`m just a frightened little boy,

I’ve faced many things in my life, Some things too hard to tell,

But Alzheimer`s and all it brings, Makes my life, a living hell,

Every day a piece of me, Is lost, forever gone,

It won’t give up I know, Until memories I have none,

So when you see and hear me, Chatting about my day,

My head rocking back with laughter, And smiling all the way,

Please spare a thought of who`s inside, Behind the warmth and joy,

Sitting there with head in hands, Is just a frightened little boy.

I don't know what or how much I'll share about my conversations with Norms.  If or when I do, it will only be with the deepest respect, and only for the possibility of changing and improving the treatment, and care of those affected by Alzheimer's and other dementia's.  To learn more about Norms and to read directly what he wants to say I invite you to his blog, or to read his book, "Me and my Alzheimer's", by Norman McNamara.  Let's all try to learn from people like Norms, and Richard.  Let's open ourselves to understanding, and advocating on their behalf and the behalf of millions affected by Alzheimer's Disease.  We will all become richer people because of knowing these men.  They are offering the lesson, please take it.  LINK HERE  

Seeking to End the Stupor

Instead of treating behavioral problems with antipsychotic drugs, the Ecumen chain of 15 homes is using strategies including aromatherapy, massage, music, games, exercise and good talk. The state is helping out.

The aged woman had stopped biting aides and hitting other residents. That was the good news.  But in the North Shore nursing home's efforts to achieve peace, she and many other residents were drugged into a stupor -- sleepy, lethargic, with little interest in food, activities and other people.  "You see that in just about any nursing home,'' said Eva Lanigan, a nurse and resident care coordinator at Sunrise Home in Two Harbors, Minn. "But what kind of quality of life is that?"...READ MORE

Inside a Dementia Ward

(Source:  Maja Daniels photographs residents, Andrea Gillies reflects on the journey there and what lies beyond the locked door, )

Am I alone in being reminded by these photographs of a nursery – or, even more poignantly, an orphanage – in which children are locked in a room without any toys?

The damage to the door around the lock as people have tried repeatedly to break out: that’s a devastating image. No one would suggest that people with dementia are like children. Indeed, that’s the point: these are people who’ve raised children and worked at jobs, run households and offices and farms. In their minds, many of them still do.

Andrea Gillies is the author of Keeper: Living With Nancy – A Journey Into Alzheimer’s, published by Short Books at £7.99. It won the 2009 Wellcome Book Prize, and the 2010 George Orwell Book Prize.

THESE PHOTOS ARE A MUST SEE!  

PLEASE WATCH THIS CLIP AND THINK ABOUT IT…  THIS IS A VERY IMPORTANT MESSAGE