Posted by: snicholef | April 11, 2011

Music Therapy and Alzheimer’s

While looking through other blogs, I came across a blog dedicated to Music Therapy. They had posted an article regarding a study done in Cambridge is 2009. I thought it was very interesting, so I thought I would share a bit of it! It is important to note that there have been many studies done on how music impacts those suffering from Alzheimer’s. Also the part of the brain that is connected to music is one of the last sections attacked by the disease. It is amazing to sit with someone who can not even tell you there name, but when you start playing a song written in the 30’s, they perk up and can sing EVERY word of the song!

Any way here is the article…

“While working as a staff development coordinator in a long-term care facility during the mid to late 1980s I witnessed agitation in persons with dementia (PWD) and the negative effects that these behaviors had on both the caregiver and the care recipient. Published research findings validated the widespread prevalence of this problem. Management strategies at the time focused primarily on chemical and physical restraints which, in and of themselves, were fraught with adverse effects. Shortly thereafter I enrolled in graduate school where I focused my efforts on exploring this problem with a clear understanding that there was a need for alternative interventions that were relatively inexpensive and could be readily and easily implemented by trained staff. These efforts eventually led to the development of individualized music as an intervention for the management of agitation in PWD. Individualized music is defined as music that has been integrated into the person’s life and is based on personal preference (Gerdner, 1992). Extensive clinical experience along with findings from a pilot study (Gerdner, 1992) served as the foundation for the development of intervention guidelines (Gerdner, 1996) and a mid-range theory of individualized music intervention for agitation (IMIA) (Gerdner, 1997). The publication of the original pilot study (Gerdner and Swanson, 1993) generated a considerable amount of interest resulting in further efforts toward testing the effects of individualized music for the management of agitation in PWD (Casby and Holm, 1994; Cohen-Mansfield and Werner, 1997; Devereaux, 1997; Thomas et al., 1997; Clark et al., 1998). The strengths and limitations of these studies were used to design a more rigorous methodology using a larger sample for the purpose of testing the propositions of IMIA and the effects of individualized music when compared to classical “relaxation” music on the frequency of agitation in PWD. The findings of this study were published in International Psychogeriatrics (Gerdner, 2000). As of January 2009, this article has been cited in 91 scholarly publications and was the impetus for additional studies conducted in the U.S.A., Sweden, Japan and Taiwan. These efforts have resulted in an expanding body of research to support the use of this intervention for the management of agitation (Ragneskog et al., 2001; Janelli et al., 2002; Suzuki et al. 2004; Sung et al., 2006; 2008; Park, 2008).”

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Posted by: snicholef | April 9, 2011

Care in the Home

Being a caregiver can be a very stressful and demanding job. Fortunately, there are many resources out there to help someone when caring for a loved one in the home. I am going to list only a few, but you can find a more complete list at either the Alzheimer’s Association or the National Institute on Aging.

žHome health service

What they do

Send a home health aid to your home. They may come for a few hours or stay for 24 hours.

       What to know about the cost
                Charge by the hour
                Medicare covers some home health service cost
                 Most insurance plans do not cover these cost
žMeals on Wheels
     What they do
                Bring hot meals to the person’s home or your home. Delivery staff do not feed the persons
      What to know about the cost
                 The person must qualify for the services based on local guidelines
                 Some groups do not charge for their services. Others may charge a small fee
žAdult Day Care Services
    What they do
                  Provide a safe environment, activities, and staff who pay attention to the needs of the person with AD
                  Provide a much-needed break for you
                  Provide transportation
      What to know about cost
                 Charge by the hour
                 Most insurance plans don’t cover these cost
žRespite Services
       what they do
                    Provide short stays, from a few days to a few weeks, in a nursing home or other place for the person with AD
                     Allow you to get a break to rest or go on vacation
       What to know about cost
                     Charge by the number of days or weeks
                      Medicare or Medicaid may cover the cost of up to 5 days
                      Most insurances do not cover these cost
Posted by: snicholef | April 8, 2011

Legal and Financial information

In life it is a generally a good idea to have updated legal and financial information. When dealing with a loved one with Alzheimer’s, or even yourself, it is very important to update this information as quickly as possible so that they can be done accurately.

Make sure the following are up to date:

1. Durable Power of Attorney for Finances
          Gives someone power to make financial decisions
2. Durable Power of Attorney for Health Care
           Gives someone power to make health care decisions for the person with AD
3.Living Will
           States the persons wishes for end-of-life health care
4. Do Not Resuscitate Form
           Tells health care staff how the person wants end-of-life health care managed
5. Will
           Tells how the person wants their property and money divided among those left behind
6.Living Trust
           Tells someone how to distribute a person’s money and property
Posted by: snicholef | April 7, 2011

Stories

I think it is important for everyone to know the many faces of Alzheimer’s. Through sharing personal stories, we can learn in a way perhaps otherwise not possible.  Only through the real life stories can you truely understand the disease known as Alzheimer’s

My dad’s journey

“We didn’t realize something was wrong until dad began to have gait problems and hallucinations. He was diagnosed at stage 4. His decline was very rapid and was most likely the form of dementia known as Diffuse Lewy Bodies. Within the time frame of three years he changed very quickly.

“It seemed each week he was losing some skill or memory. His journey and the impact it had on our lives compelled me to write a book. I gathered as many experts as I could find and included the stories of three Alzheimer’s patients and their families. My book is entitled Into the Mist because that was how the disease made us feel.

“He was drifting into a mist and we could not follow. My dad’s journey began when he was 74 with a bright full life ahead of him. It ended when he was 77. Those three years were the most amazing, heartbreaking and lesson filled years of my life.” – Deborah U

38 and diagnosed with Alzheimer’s…

“In August 2002, I was diagnosed with Early Onset Alzheimer’s Disease… I was only 38 years old! Organic Brain Disease was the diagnosis from the Mayo Clinic and the diagnosis was confirmed by an excellent Neurologist in my hometown who diagnosed me with Early Onset Alzheimers Disease etiology unknown, possible FTD.

“My family and I were blessed with the medications Exelona dn Namenda as they have given me a little more time and quality of life with them. I have taken this horrific diagnosis and turned it into the best that it can be if there is such as thing.

“I have written 2 books about the disease with one of those being a children’s book co-authored by my now 11 year old son. My husband and I have become very big advocates in speaking out against this disease through conferences and Public Policy and so many others experiences. There is so much more to tell but little time.” – Tracy M

Still going strong – Wednesday, August 8, 2007 6:50 AM

“I’m Patrick R, just like to tell you we are still going strong as we enter our 13th year. Best of all please God we’ll celebrate 52yrs married and two teeks later she’ll be 73 and a day later I’ll be 76.

Though she’s not able to move, is stiff and falls to one side, I lift her into the car and take her shopping twice a week. Just got back from a 3 mile walk with her strapped legs and waist in w/chair.

Sure it’s hard work being up every day at 04.50hrs but a very rewarding experience learning to be a man in a woman’s world. All the housework, shopping, cooking, washing etc etc, more men should try it! It makes me appreciate what she’s done over 40yrs.

I’ve only had 12years of it! I’ve also managed to write a book in the past 18 months, due to be published soom.

Add to the story above. We’re still going strong and had our birthdays last week, wife Jean, 73yrs and I 76yrs. In addition we celebrated 52yrs married last month. Though she still can’t move (very rigid) nor speak she’s in good health.

As we enter the 13th year of her illness, I find I’m more content and happy with my life as a lone caregiver. It’s only four years ago I was being advised by her Doctor, not to sit holding her hand over night, as she was likley to pass away when i visited the bathroom. As I held her hand I told her it’s OK to let go and meet her folks, I’d be along later’. God willing I’m be back in an other two years to report we’re still here.” – Patrick R

Posted by: snicholef | April 7, 2011

Remembering the caregivers

I can’t help but stop thinking about the caregivers of loved ones with Alzheimers Disease.  The day to day routine can be so draining for caregivers, that  they quickly  are burnt out. As a caregiver in a adult day care that specializes in Alzheimers , my mind often drifts to the caregivers that care with the adults on a everyday, all day basis. I know at times the few hours I am working, that I find myself drained and watching the clock for when I can go home. But that is not the case, nor option of full time caregivers. I think about their personal stories, situations, and life beyond Alzheimers, and my heart aches and prays that they will have the strengh to continue to give their loved one the care needed.

I found the video, entitled “Remembering the Caregivers“, and I thought the insight and information provided is important for all to understand. You never know when life might take a turn and place you in a simular situation. I especially love the honesty of the couple interviewed. They do not try to show a peachy perfect life, but one of daily recognition, reflection, patience, and understanding.

Posted by: snicholef | April 7, 2011

Caregivers

Becoming a caregiver of a loved one with Alzheimer’s disease can be  draining both physically and emotionally. It is important that caregivers understand how to deal, cope, and relate when being a cargive of someone with Alzheimers’s. The following are education tips on being a caregiver.

1. Educate yourself about the disease

2. Understand the experiance of your loved one: Be Patient, and adjust your expectations

3. Avoid caregiver burnout: Make time for yourself. Join caregiver support groups. Pursue interests beyond your caregiving role, such as exercise, hobbies, journaling and art

4. Discuss the situation with family and friends: Support systems of critical

5. Think Positive: Focus on your loved ones remaining strengths and enjoy your relationship while your still able to

Finally it is important to understand the importance of daily routines. Daily routines are sacred for most people. When caring for individuals with dementia, sticking to a routine is not only sacred, but a necessity.Since change is difficult for individuals with Alzheimer’s disease and related illnesses, a structured schedule can meet two objectives: relieving caregiver stress and helping individuals maintain their abilities.

           

I am excited to say that early onset Alzheimer’s has been added to the Compassionate Allowance list in 2010. This gives those living with the disease fast access yo social security disability insurance, and supplemental security income. This is important, because too often Alzheimer’s is associated with only the elderly, and this is not the case for everyone. People as young as 30 have been diagnosed with Alzheimer’s and it is important that they have access to life sustaining aid.

Posted by: snicholef | April 6, 2011

Recent Congressional Acts

In 2009 a landmark legislation was endorsed. The National Alzheimer’s Project Act is the largest legislative victory in many years for the Alzheimer’s cause. Here is a direct quote from the Alzheimer’s Association about this incredible piece of legislation.

“The National Alzheimer’s Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer’s advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer’s Association and its advocates led us to the historic legislative victory for the Alzheimer community”.
Posted by: snicholef | April 6, 2011

Memory Walk

I recently learned that Utah has 2 Memory Walks this year. One in Salt Lake and the other in St. George. Memory Walk is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research. And it calls on people of all ages to take action in the fight. Year round, our participants are involved in efforts to help defeat theis devastating disease. Through participating in a local Memory walk, together was are on the MOVE to end Alzheimer’s.

There is no memory walk in your area? Well you can still help the cause by participating in a virtual walk. No matter where you live you can join in the fight against Alzheimer’s. I think this is a great cause for all. I cant not think of a better way to spend my morning, afternoon, or evening, joining in a cause that is so devestating to so many around the globe. This year I might even possibly look in to the possibility of joining a team, or creating one myself. If you intersted let me know!

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Posted by: snicholef | April 4, 2011

Continued Reasearch is Key

Continued reasearch into the cause, and care of Alzheimers is key. Around the world, scientist are working around the clock to unlock the secret of Alzheimer’s that is preventing a cure. Part of this reason, is that only have death, have scientist been able to view the damage and workings of a brain suffering from Alzheimer’s. This make’s research and testing very difficult. However, with growing technologies, we are coming closer to finding some much needed answers.

In December of 2009, a study of realeased that helps bring us one step closer. The report is about how Amyloid Deposits in the brain, may predict Alzheimers Disease. Here are some highlights from that report.

“For people free of dementia, abnormal deposits of a protein associated with Alzheimer’s disease are associated with increased risk of developing the symptoms of the progressive brain disorder, according to two studies from researchers at Washington University in St. Louis. The studies, primarily funded by the National Institute on Aging (NIA), part of the National Institutes of Health, linked higher amounts of the protein deposits in dementia-free people with greater risk for developing the disease, and with loss of brain volume and subtle declines in cognitive abilities.

The two studies are reported in the Dec. 14, 2009, online issue of Archives of Neurology. The scientists used brain scans and other tests to explore the relationship between levels of beta-amyloid, a sticky protein that forms the hallmark plaques of Alzheimer’s disease, and dementia risk in cognitively normal people. John C. Morris, M.D., who directs the NIA-supported Alzheimer’s Disease Research Center at Washington University in St. Louis, and his team conducted the research. Martha Storandt, Ph.D., also of Washington University in St. Louis, directed one of the studies.

“Previous studies of brain pathology, cognitive testing, and brain imaging have for some time suggested that Alzheimer’s pathology causes changes to the brain many years before memory loss, confusion, and other symptoms of the disease are apparent. But it remains difficult to accurately predict whether a cognitively normal person will—or will not—develop the disease,” said NIA Director Richard J. Hodes, M.D. “These new studies suggest that beta-amyloid measured in the brains of cognitively normal individuals may be a preclinical sign of disease.”

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