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Monday, January 26, 2015

Do you any story's you want to share

The Book

Do you know someone with Alzheimer’s?  
If you do you will know it is a cruel disease which leaves our loved ones a shell of their former self. Amongst the difficult days there are sometimes funny events or actions that make us smile. If you can relate to this and would like to share your story please email me. I am in the process of writing a book and would like to hear from you.
You need to give a brief background of your loved one your funny story and your name, city and age.
Don’t forget to include who you want to dedicate to your story to. I have provided an example below:
My Grandma has always been a special person in my life we idolised each other. A few years ago she started acting different and becoming forgetful. There has been a gradual decline in her health over the years.
 Like a lot of people I love my food. This love of food was destroyed in seconds thanks to Alzheimer’s.
I thought I would do a nice thing and buy my grandma some food take it round to her house and cook it for her. So I turn up with gammon and potatoes and veg. I popped it in the fridge and told her I would be back at 4pm and would cook it for her.
4pm approached I walked into the kitchen to find her cooking. I left her to it and sat down at the table. Within a few minutes I was greeted to….gammon potatoes and vegetables along with rice salad and strawberry strudel and gravy all on the same plate!!
I have never looked at gammon the same since 
Samantha Thompson aged 24 Morecambe
Knowing you are not alone and listening to others sharing their stories can help in normalising your situation.

Sunday, January 25, 2015

Very good free information on Lewy body dementia

This is a wonderful book and it free I order a lot and I pass it this around so people know


40-Page Free Book on Lewy Body Dementia



Cover of Lewy Body Dementia Book
FREE BOOK

More than 1 million Americans, most of them older adults, are affected by Lewy Body dementia (LBD), a “cousin” of Alzheimer’s disease and Parkinson’s disease. Now, you can get your free LBD book from the U.S. government's NIH. It gives insight into caregiving for LBD, with its challenges of cognition, movement, sleep and behavior. Learn about this common cousin of Alzheimer’s & Parkinson’s.




A new publication from the National Institutes of Health (NIH) describes LBD—a brain disorder that can affect cognition, movement, sleep, and behavior—and offers practical advice for people with the disease and caregivers.

Read Lewy Body Dementia: Information for Patients, Families, and Professionals to find out more about:
  • Types of LBD: dementia with Lewy Bodies and Parkinson’s disease dementia
  • Causes and risk factors
  • Symptoms, diagnosis, and treatment
  • Caregiving and living with LBD
The 40-page booklet is jointly published by the National Institute on Aging (NIA) and the National Institute of Neurological Disorders and Stroke, both part of NIH.

Available FREE: 

More on LBD

WHAT IS DEMENTIA WITH LEWY BODIES?

Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features:  (1) pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech; (2) recurrent visual hallucinations,  and (3) parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.   People may also suffer from depression.  The symptoms of DLB are caused by the build-up of Lewy bodies – accumulated bits of alpha-synuclein protein -- inside the nuclei of neurons in areas of the brain that control particular aspects of memory and motor control.  Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies." The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis. In addition, Lewy bodies are often also found in the brains of people with Parkinson's and Alzheimer’s diseases.  These findings suggest that either DLB is related to these other causes of dementia or that an individual can have both diseases at the same time.  DLB usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported.

IS THERE ANY TREATMENT?

There is no cure for DLB.  Treatments are aimed at controlling the cognitive, psychiatric, and motor symptoms of the disorder. Acetylcholinesterase inhibitors, such as donepezil and rivastigmine, are primarily used to treat the cognitive symptoms of DLB, but they may also be of some benefit in reducing the psychiatric and motor symptoms.  Doctors tend to avoid prescribing antipsychotics for hallucinatory symptoms of DLB because of the risk that neuroleptic sensitivity could worsen the motor symptoms.  Some individuals with DLB may benefit from the use of levodopa for their rigidity and loss of spontaneous movement.   

WHAT IS THE PROGNOSIS?

Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration.  There are no known therapies to stop or slow the progression of DLB.  Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability. 

WHAT RESEARCH IS BEING DONE?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to DLB in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country.  Much of this research focuses on searching for the genetic roots of DLB, exploring the molecular mechanisms of alpha-synuclein accumulation, and discovering how Lewy bodies cause the particular symptoms of DLB and the other synucleinopathies. The goal of NINDS research is to find better ways to prevent, treat, and ultimately cure disorders such as DLB.

NIH Patient Recruitment for Dementia With Lewy Bodies Clinical Trials

Lewy Body Dementia Association
912 Killian Hill Road, S.W.
Lilburn, GA   30047
lbda@lbda.org
http://www.lbda.org External link
Tel: Telephone: 404-935-6444 LBD Caregiver Link: 800-539-9767
Fax: 480-422-5434

For more information about Alzheimer’s and other dementias, visit NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center at www.nia.nih.gov/alzheimers/topics/other-dementias.

SOURCE:
NIH NIA Alzheimer’s Disease Education and Referral (ADEAR) Center

Monday, January 19, 2015

When is the right time to put your love one in assisted living

How to Recognize Signs It’s Time for Assisted Living

Posted On 29 Dec 2014

Sometimes caring for a loved one with dementia begins to take too much of a toll on the caregiver. We asked a psychologist for tips on how to recognize when it’s time for assisted living.
How to Recognize Signs It's Time for Assisted Living
More than 15 million Americans devote time and energy to caring for a loved one with Alzheimer’s disease or other dementia, according to the Alzheimer’s Association, but sometimes the cost of caregiving becomes too high. Caregivers find themselves unable to bear the burden of providing home health care without suffering from stress and illness themselves. At that point, it may be time to consider whether to move a loved one into assisted living if their health needs become too much to handle at home.

Signs that Your Loved One May Need Assisted Living

Moving a family member into residential care is never an easy decision. However, there are some telltale signs that caregivers can look for in order to recognize when it’s time for assisted living:
  1. Wandering: In later stages of dementia, the risk posed by wandering becomes much greater, notes Rita Vasquez, M.A., an MFTI Clinician at Quail Lakes Counseling Center in Stockton, California. “They can wander even if you just take the time to go to the bathroom,” she says, and the probability of falls and injuries increases.
  2. Sundowning: Sundowner syndrome“—very agitated behavior that becomes more pronounced later in the day—is a common characteristic of those with Alzheimer’s. Vasquez says that this can take a heavy toll on caregivers, and when it begins to severely disrupt family routines, this may be a sign that the caregiving burden is too hard to handle.
  3. Aggression: Verbal, physical, and even sexual aggression frequently happen in those with dementia, and caregivers and other family members may suffer or begin to feel resentful. “I tell people when they’re getting to that state, it’s time to start considering placement,” says Vasquez.
  4. Home safety issues: Ask yourself honest questions about your senior family member’s health and your own abilities to care for them. Is the person with dementia becoming unsafe in their current home?
  5. Escalating care needs: Is the health of the person with dementia or my health as a caregiver at risk? Are the person’s care needs beyond my physical abilities? If you’re answering yes to those questions, it might be time to have that tough family conversation.
  6. Caregiver stress: Stress and other caregiver symptoms can be just as telling a sign as the dementia behaviors described above.

Caregiver Stress May Indicate a Need for Help

An article in the New York Times discussed the psychological costs of caregiving and of making difficult care decisions, which some professionals are likening to the effects of post-traumatic stress disorder. Caregivers may experience symptoms like “intrusive thoughts, disabling anxiety, hyper-vigilance, avoidance behaviors,” and more.
Rita Vasquez attributes these symptoms not only to the pressures of caring for someone with dementia, but also to the disruptions to normal sleep and eating patterns that result when one is spending so much time on caregiving: “When the brain is always on alert, many things are going to happen—you’re not going to eat well, your nutrition is going to go down,” and physical health suffers.
The emotional, mental and physical toll of caregiving can be particularly pronounced for spouses of those who need care. In one of the families Vasquez works with, the wife and primary caregiver is 80 years old.
“She’s taking care of her 85-year-old husband and it’s draining her,” Vasquez says. “When he fell recently, she couldn’t pick him up and had to call the paramedics.”
In cases like this, it might be clear immediately when the demands of care become too great. In other cases, it might not be so obvious. However, if you are feeling isolated and alone, or if you begin to feel resentful of your loved one, it might be time to examine the source of those feelings, says Vasquez.
“Sleep deprivation, anger, resentment, all those things will become part of what happens to a caregiver,” she says. “And, of course, the guilt, when you think, ‘I’m not doing enough.’” When that happens, it’s important to recognize how much you’ve been giving to your loved one, and perhaps tell yourself, “Okay, I’m not living a life for myself anymore, I’m living for that person.”

My Loved One Needs More Help Than I Can Give—What Now?

Deciding between assisted living vs in-home care is never easy, and caregiver guilt and grief are common reactions to moving seniors out of their homes. As Rita Vasquez puts it, “We lose our family member twice: once to the disease, and again when they pass.” Caregivers may wonder if they could or should have done more; they may feel separation anxiety in moving their loved one to another location. If family dynamics are difficult—if, for instance, a caregiver caring for a parent had an unhappy childhood—that may further complicate the decision process.
This is why planning ahead is so important: “If you know your family member is in the early stages of [illness], first and foremost you want to get all your paperwork together,” Vasquez says. “It’s in our culture that we don’t want to talk about those things,” but before dementia begins to affect your loved one’s cognitive health, it’s important to have someone help them collect the right paperwork and make those critical decisions, whether it’s a friend, family member, or physician. Planning ahead, getting informed, and involving the appropriate persons in the decision will ultimately help ease the process when it’s time to move your loved one into care.
The best way to be there for them, Vasquez says, is to know that they are in the proper place for getting the care that they need. Visit communities before choosing one, and make sure they have activities and medical support appropriate to dementia patients. Ultimately, she says, try to remember that if you’ve done that research “They are going to thrive wherever you send them.”

Caring for the Caregiver

As a caregiver, it can be difficult enough to find time to care for your senior loved one, let alone yourself—even if your family member is in residential care. But staying healthy is one of the best things you can do to provide the support your loved one needs. Arranging a short stint in respite care is one way to get some time to rest and recuperate, especially if you are caring for someone at home.
Taking care of your mental health is also critical, and there are many benefits to seeking out a circle of support to bolster you when times are difficult. Counseling, therapy, and support groups all exist to help family members going through transitions relating to Alzheimer’s and dementia. Check with the facility that your loved one is moving to, suggests Vasquez, who has led caregiver support groups and coordinated family services at a local residential care facility. Many care homes, she says, offer support groups and other resources for families. These resources can help you come to terms with the idea that sometimes the best decision for the health and happiness of both parties is putting your loved one into care.
“We have to know that as a human being, we can only do so much without taxing our health,” says Vasquez.
We want to hear from readers, too—what advice would you give to caregivers struggling with the decision to put a loved one in assisted living? Let us know in the comments.
Related Articles:
How to Recognize Signs It's Time for Assisted Living by 
About the Author
Sarah J. Stevenson is a writer, artist, editor and graphic designer living in Northern California. Her visual art has been exhibited around California, and her writing has appeared in a variety of web sites and print publications. In addition to writing about older adults, she also writes for younger ones--her first novel for young adults, THE LATTE REBELLION, was published in 2011 by Flux. For more information, please visit: http://www.sarahjamilastevenson.com View .

Friday, January 16, 2015

What are Lewy bodies


What are Lewy bodies 

In 1912, while Frederick Lewy was examining the brains of people with Parkinson's disease, he discovered irregularities in the cells in the mid-brain region. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as Lewy bodies. Since that time, the presence of Lewy bodies in the mid-brain has been recognized as a hallmark of Parkinson's disease. In the 1960s, researchers found Lewy bodies in the cortex (the outer layer of gray matter) of the brains of some people who had dementia. Lewy bodies in the cortex are known as cortical Lewy bodies or diffuse Lewy bodies. (That's why Lewy body disease is sometimes called cortical Lewy body disease or diffuse Lewy body disease.) Cortical Lewy bodies were thought to be rare, until the 1980s when improved methodologies showed that Lewy body disease was more common than previously realized.
People with Lewy body disease have Lewy bodies in the mid-brain region (like those with Parkinson's disease) and in the cortex of the brain. It's believed that they usually also have the "plaques and tangles" of the brain that characterize Alzheimer's disease. Conversely, it's believed that many people with Alzheimer's disease also have cortical Lewy bodies. Because of the overlap, it's likely that many people with Lewy body disease are misdiagnosed (at least initially) as having either Parkinson's disease or Alzheimer's disease. A big factor in the misdiagnosis might be that Lewy body disease is relatively unknown.

Treatment

Treatment

Right now, doctors prescribe drugs to treat four major features found in Lewy body disease 
  • Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
  • Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
  • Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.
  • Depression. In cases of depression, an antidepressant, such as Zoloft or Prozac, might be prescribed.

Symptoms of Lewy body disease

Symptoms of Lewy body disease

People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:
  • Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
  • Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
  • Visual hallucinations, usually occurring early on. Delusions may be common too.
It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

Different stages of my mom start off in 2011 to now

This one was taken in spring of 2011

This one was taken in summer of August 2013




This was taken this fall 2014 and that Sophia