Alzheimer's volunteer buddy respite program

Edited by: Lauri Rottmayer
Email: rottmayer@kjrh.com

More than 77,000 Oklahomans suffer from Alzheimer’s Disease. The daily care of a person with Alzheimer's Disease can be challenging and requires many personal sacrifices to ensure a loved one remains safe and comfortable. Caregivers need time off from their caregiving responsibilities to relieve stress and prevent burnout.

To help reduce the stress, the Alzheimer’s Association Oklahoma and Arkansas Chapter is seeking individuals who may be interested in volunteering for a Volunteer Respite Buddy Program. Currently, there are more requests for respite care than volunteers already enrolled in the program.

The Alzheimer’s Association recruits and trains respite volunteers for individuals who are in the early stages of Alzheimer’s disease. After completing training, each volunteer is carefully matched with a caregiving family. The volunteer spends 2-4 hours with the person with Alzheimer’s or related dementia each week, while the caregiver takes a break. Caregivers tell us it means the world to them to know that someone cares enough to help. Respite volunteers tell us this is one of the most meaningful things they’ve ever done. If you are interested in learning more about becoming a respite volunteer, please call 800-272-3900 and ask for Cathy Sullins or Ruth Drew.

Respite care provides a break for caregivers, time when they can run errands, rest, relieve stress, and attend to their own needs. Caregivers who do not receive support and respite often become sick themselves. Some even die due to the strain. Regular respite is essential and lifesaving.

“Respite care provides a temporary break from daily caregiving responsibilities. Using respite services can support and strengthen the ability to continue taking care of a loved one with Alzheimer's in the home,” said Tonda Ames, vice president of marketing and programs for the Alzheimer’s Association Oklahoma and Arkansas Chapter.

The Alzheimer’s Association is the largest voluntary health organization in.......read all of the Alzheimer's volunteer buddy respite program

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Study: 'Old' drug may slow Alzheimer's decline

ajc.com

By Jeremy Manier
Chicago Tribune

Chicago —- Hope is often scarce in research on Alzheimer's disease, but a study released Tuesday at a Chicago medical conference offered tentative hope for a new way of slowing elderly patients' mental decline.

The preliminary study of 321 Alzheimer's patients from Singapore and Britain found that an old drug, previously used for urinary tract infections and other ailments, reduced the patients' rate of mental loss by 81 percent, based on a standard measure of cognitive performance and memory.

The results require further confirmation, but whatever the outcome, some experts are intrigued by the drug's novel way of attacking the disease.

Scientists say the medication, which goes by the commercial name of "rember," may work by dissolving tangles of a protein that collects in the brain cells of Alzheimer's patients.

If true, the therapy could be the first to stave off an underlying cause of.....read more of

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Caregivers need help in war on dementia

Tallahassee.com

Bonnie Holub

Obviously, my cousins and I never saw our grandfather fight the battles of WWII. But we watched him battle hard on another front with as much determination, care, strength and bravery as he must have exhibited to his men. Our grandmother, Alice Smith, became unable to travel to the 807th reunions because of her fight with Parkinson's, one of many diseases associated with dementia. Her fight became our grandfather's fight, too.

Our grandmother passed away at age 89, just a week shy of their 70th wedding anniversary. The last few years were ones of constant care for my grandmother, by my grandfather. Family members, especially my uncle and mother, helped enormously, but the emotional and physical toll on Papo was immeasurable. And yet, he was always positive. Always in an upbeat, if not tired, mood. And he was able to keep his wife at home. A major victory in a long losing war.

One of the reinforcements that helped sustain my grandfather during the most difficult times of my grandmother's illness was his "mornings off," for golfing or fishing with my uncle. Agnes Rodgers, a friend who we now know is as an angel on Earth, cared for my grandmother five mornings a week, so father and son could get away from the responsibilities of caregiving for a few needed hours of recreation. Without this intervention, the toll on my grandfather may have been debilitating, perhaps robbing him of another healthy decade of life. Papo passed away at age 101, after a brief illness, and as mentally sharp as ever.



To stay mentally and physically healthy, caregivers need care, too. Almost everyone knows someone whose family members are doing battle with Alzheimer's or some other form of dementia. And I don't know a caregiver who wouldn't benefit from a little R&R.

Thanks to the Alzheimer's Project of the Big Bend Area, reinforcements are on the way for Wakulla caregivers. Those who are caring for someone suffering from any form of dementia may bring their loved ones to the Respite Care Room at Lake Ellen Baptist Church Fellowship Hall in Crawfordville, two Mondays a month. Trained volunteers and a registered nurse, Project Director Lori Chandler, will provide care free of charge to participants, allowing caregivers a few hours' break.

Recie Culpepper, volunteer coordinator with the Alzheimer's Project of the Big Bend, said participants can enjoy group activities, friendly conversation, walks, games, music, snacks, and meals. Pat Ashley, whose mother suffered from dementia and who established the Wakulla Alzheimer's Support Groups, is instrumental in organizing the Respite Care Room. She asked that anyone who would like to volunteer a few hours each month contact her for training information. She also said contributions to the resources of the Respite Care Room are needed and appreciated. Donations can be in the form of lunches, snacks, paper goods, games, craft materials or cash. "We already have donations from Auto Trim Design and Walgreen's," Ashley said. "And the Catholic Ladies Circle is providing our first lunch for participants on June 15."

Joyce Frazier, volunteer coordinator for the Respite Care Room, said, "Most of our volunteers have had a family member with dementia. We know what it's like, and we are here with our arms open wide for those who need us."

"Our goal is to provide this service every Monday of the month if we can get enough volunteer help," added Ashley.

Most of us, at some point in our lives, do battle for something or someone we love. The fight against dementia can be overwhelming, but if we stand with each other in the midst of the struggle, the keys to many hearts will be among our lifetime awards.

To stay mentally and physically healthy, caregivers need care, too. Almost everyone knows someone whose family members are doing battle with Alzheimer's or some other form of dementia. And I don't know a caregiver who wouldn't benefit from a little R&R.

Thanks to the Alzheimer's Project of the Big Bend Area, reinforcements are on the way for Wakulla caregivers. Those who are caring for someone suffering from any form of dementia may bring their loved ones to the Respite Care Room at Lake Ellen Baptist Church Fellowship Hall in Crawfordville, two Mondays a month. Trained volunteers and a registered nurse, Project Director Lori Chandler, will provide care free of charge to participants, allowing caregivers a few hours' break.

Recie Culpepper, volunteer coordinator with the Alzheimer's Project of the Big Bend, said participants can enjoy group activities, friendly conversation, walks, games, music, snacks, and meals. Pat Ashley, whose mother suffered from dementia and who established the Wakulla Alzheimer's Support Groups, is instrumental in organizing the Respite Care Room. She asked that anyone who would like to volunteer a few hours each month contact her for training information. She also said contributions to the resources of the Respite Care Room are needed and appreciated. Donations can be in the form of lunches, snacks, paper goods, games, craft materials or cash. "We already have donations from Auto Trim Design and Walgreen's," Ashley said. "And the Catholic Ladies Circle is providing our first lunch for participants on June 15."

Joyce Frazier, volunteer coordinator for the Respite Care Room, said, "Most of our volunteers have had a family member with dementia. We know what it's like, and we are here with our arms open wide for those who need us."

"Our goal is to provide this service every Monday......read more on Caregivers need help in war on dementia

Here is a great dementia resource for caregivers and healthcare professinals,

Here is information on being the best caregiver you can be

Here are more interesting dementia articles and activities,

Footwear for Those with Dementia Disease

WiredPRNews.com

Companies are teaming up to create a shoe with a built in GPS tracking device.

Wired PR News – The development of a unique type of shoe is in the works, which will benefit those with dementia diseases and their families. As reported by AFP, technology company GTX Corp. and shoe manufacturer Aetrex Worldwide plan to collaborate on the creation of a shoe with a built-in GPS tracker to locate individuals suffering from Alzheimer’s Disease, who may need locating.

Project advisor Andrew Carle of George Mason University, is quoted in the report as stating, “The technology will provide the location of the individual wearing the shoes within 30 feet, anywhere on the planet…Sixty percent of individuals afflicted with Alzheimer’s Disease will be involved in a ‘critical wandering incident’ at least once during the progression of the disease — many more than once.”

Testing for the product is expected to begin during the latter part of the year.

Here is a great dementia resource for caregivers and healthcare professinals,

Here is information on being the best caregiver you can be

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Virtual Dementia Tour Helps Caregivers Further Understand the Disease

KAUZ.com

KAUZ News

Tens of millions of Americans suffer from Alzheimer's and millions more from dementia, and understanding what they go through is crucial. Most Alzheimer's patients live at home where family and friends care for them. Today, those caregivers had a chance to experience dementia by taking a virtual dementia tour. Doctors say learning to create a positive environment for those who suffer from dementia can only come from attempting to walk in their shoes.

Because of the difficult behaviors and symptoms of Alzheimer's, many caregivers suffer from burnout and depression. Studies show these caregivers are not formally trained to provide the support needed for those living with dementia.

"We wanted to let people see what........read the whole story

Here is a great dementia resource for caregivers and healthcare professinals,

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Book Reviews: Adorable Photographs of Our Baby (Susan Berg)-Take your Oxygen First (Leeza Gibbons)

Sharon Brothers MSW and others

Adorable Photographs of Our Baby
Meaningful Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals

In light of recent research, activities should take on a whole new dimension in long-term care. Activities can no longer be thought of as leisure time fillers, but rather, as opportunities to provide mental stimulation. If done thoughtfully, activities can help those with Alzheimer s disease hold on to their remaining cognitive skills longer and enhance mood. In a word, activities should be therapeutic. Susan Berg s book is a treasure-trove of therapeutic activities that can bring joy and purpose to those with a cognitive impairment.
Paul Raia, Ph.D, Director of Patient Care and Family Support Alzheimer’s Association, Massachusetts Chapter --

Families often face the challenge of “what do I talk about” or “what can Mom do” during their visits. I think this book opens a window of opportunities for conversation and pleasant visits for our families and their loved ones.
Sandy Whelan, ADC,Director of Resident Programming,New Albany, IN

As an occupational therapist I appreciate how Susan Berg provides detailed directions on how to use these photographs to stimulate patients who are in different stages of memory loss. The simple and attractive photographs have universal appeal and the large, bold captions make the book easy to use by individuals in the early stages of dementia. Each photograph is accompanied by an idea page that suggests ways to use the photograph to stimulate the patient. This may be as simple as saying "The baby in the picture is being hugged" and then giving each resident a hug or the photograph may be used to initiate a discussion of how hugs make one feel.
This book provides a useful tool for professionals who work in the activities field. Family members or friends of memory impaired individuals may feel more comfortable interacting with a loved one when using this guide book filled with fun activities. Thank-you, Susan!
Barbara Smith, M.S., OTR/L author of Still Giving Kisses: A Guide to Helping and Enjoying the Alzheimer's Victim You Love and The Recycling Occupational Therapist

Take your Oxygen First
I have to admit I wasn't really sure what the title was about until Leeza explains at the beginning of Chapter 1, after a 30 page introduction to her family's story. She reminds us that, at the start of an airline flight, during the instructions on what to do in case of an emergency we're told to "put your oxygen on first, before the child you're traveling with." For Gibbons, this idea applies to caregiving, too:

"If you think about it for a moment, you realize that if you ignore your own need for oxygen, there is a good chance you may be unable to help your loved one, and if that happens, you may put both yourself and your loved one in danger of serious injury or worse...if you don't take care of yourself first, you'll be unable to care for your loved ones in their time of need."

I'm looking forward to reading more in this book. I'll share with you some of the highlights that I find. But for today, this is the message for family caregivers in a nutshell:

It's a tough journey, but rewarding for those who travel the caregiving path.

Your first task - everyday - is to take care of yourself so you can continue to take care of your loved one.
Sharon Brothers MSW
New Caregivers
View FREE training module, Becoming a Caregiver.

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Berks woman finds joy in caring for father with Alzheimer's disease

ReadingEagle.com

A Stony Creek Mills resident lives with her dad, who has Alzheimer's disease. It hasn't always been easy, but she's glad to care for him the way he always did for her.
By Bruce R. Posten
Reading Eagle


Sometimes Penny Chille's 93-year-old father, Matthew Oleskow, recognizes her and sometimes he doesn't.

"Every once in awhile he will say 'I love you,' and I have a glimpse of my father again," said Chille, 66, Stony Creek Mills, a retired delicatessen clerk. "It's a joy to have him with me. I always call him Daddy. Other people just call him Handsome."

Suffering in the latter stages of Alzheimer's, Oleskow, a widower whose wife died of congestive heart failure in 1988, has lived with his daughter for about 10 years.

But he didn't leave his Philadelphia home easily or willingly.

"My father is a wonderful man, a caring person, and was a great role model," Chille said. "He was a strict dad, but he never was upset or depressed. He'd say being like that is just a waste of time."

Oleskow falls into the extreme end of the category of what national gerontology experts refer to as once strong, independent and self-reliant men who, as they age or become debilitated, don't readily admit that they need medical help or family or social support."

Years ago, during the first signs of dementia, the longtime shipper for a car company still wanted to drive his own vehicle even though he often couldn't remember where he parked it.

"I used to go down to Philadelphia and visit my father regularly," Chille said. "He was just disappearing from his home on occasion. He was not eating right. One time, he had packed up the house, went to the bank and intended to move to North Carolina."

Chille said that when her father was hospitalized and diagnosed with Alzheimer's, he was angry.

After medical treatment and legal proceedings, it was thought best that Oleskow live with Chille, while her sister, who lives in Scranton, handles the finances, Chille said.

His primary caregivers now are Chille and her neighbor Patti Rebeiro, who thinks the world of Oleskow, Chille said.

"When Daddy first came here, it was hard: the strain of it all ended my marriage," Chille said. "I had some help from agencies. But my father could walk then and ultimately I had to secure my home.

"One December, he left the house, fell on the rock and just laid outside until we found him."

In the past five years, Oleskow mainly has been confined to his bed.

At first, Oleskow, out of frustration or anger, would reach out to hit his daughter. In more recent years, he's become calmer.

"Strangely, as the disease progresses, it does get easier in some ways," Chille said. "Early on, when my father would break down and cry, it would devastate me because it meant he was remembering. But there are just things you have to get used to."

While Chille feels caring for her aging father is a duty, she believes it is a loving one. That belief comes with the knowledge that her father always cared for her - he adopted her.

"I didn't know that until........read the whole article

Here is a great dementia resource for caregivers and healthcare professinals,

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Computer System For Dementia Patients

ScienceDaily — The labour force in the health services is shrinking, there are more and more old people, and a very high proportion of them are plagued by deteriorating short- and long-term memory. All this has created a need for computer-based solutions that will enable elderly people to live safely in their own homes, but at the same time, the technology needed to take special care of them is expensive. On top of this, different standards for home sensors create problems.

This situation formed the backcloth for the EU’s decision a couple of years ago to launch a series of projects to make it simpler for industry to develop new equipment in this field. One of these projects was called Mpower, and its aim was to create a computer platform that could be used for various purposes and meet a wide range of needs among its target group.

What is being tested out in Norway today is a simple communication system based on a computer screen, aimed at elderly people who live at home but whose memory is failing. No keyboard is needed, only a touch on the..........read the whole article

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Witnessing Alzheimer's: A Caregiver's View

Seattlepi

from: Keri Pollock, Alzheimer's Association (800) 848-7097
Western and Central Washington State Chapter of the Alzheimer's Association

Playbook for Alzheimer's Caregivers: A Practical Tips Guide
Free "How-to" Guide Helps Caregivers Address the Challenges of Caregiving

Currently there are over 110,000 Washingtonians with Alzheimer's and related dementias, ten percent are under the age of 65. That number is expected to triple by 2050. With major cuts in state funding for healthcare and Adult Day Health Services, how do families cope with the challenges of caregiving?

The 2009 Alzheimer's Disease Facts and Figures, released in April by the Alzheimer's Association, states some startling statistics:

• Every 70 seconds, someone develops Alzheimer's disease
• Currently, 5.3 million Americas have Alzheimer's or a related dementia
• That number is expected to triple by 2050 if a cure or treatment isn't found
• Alzheimer's is the 5th leading cause of death of those 65 and older in the U.S.
• In the next two years, the first baby boomers will reach their 65th birthday
• Of the 70 million baby boomers in the U.S., 10 million will develop Alzheimer's disease
• There are 10 million Americans (family, friends and neighbors) providing unpaid care for a person with Alzheimer's or a related dementia

The Western and Central Washington State Chapter of the Alzheimer's Association -- -- headquartered in Seattle and serving 23 counties, knows the number of people with Alzheimer's and related dementias is growing, the challenge it poses on family and friends, as well as the looming public health crisis that this could eventually create. And with the recent cuts in the Washington state budget for adult day health services, families will be grappling on a deeper level with caregiving issues.

Caregiving for a person with Alzheimer's can be particularly stressful and often compromise the health of caregivers. To help address this issue and provide effective solutions, the Association is making available, free of charge, the concise, purposeful Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Tips Guide which includes a portable "Pocket Reference of Tips and Strategies".

Coach Broyles is the former Athletic Director for the University of Arkansas Razorbacks, and this "playbook" evolved from his experiences of caring for his wife, Barbara, who had Alzheimer's and passed away in 2004. This insightful, comprehensive guide covers the gamut of topics from communicating with your loved one's doctor to communication tips with your loved one as his or her disease progresses, as well as dressing, wandering, home safety, eating and general survival.

The Western and Central Washington State Chapter offers other resources, available for download at http://www.alz.org/alzwa/in_my_community_13905.asp in addition to their 24-hour-a-day/7-day-a-week toll-free Helpline at 800.848.7097.

Helpline specialists are available to answer questions, provide resources, as well as lend an ear when times gets stressful. Helpline can also link families with the Chapter's Connections Care Consultation Program, providing individualized guidance to families and individuals in addressing immediate needs and planning for the future, with ongoing support throughout the course of the disease. The Chapter offers a variety of Support Groups, trainings and workshops to help in the journey as well.

To receive a copy of the Coach Broyles' Playbook, call the Chapter's Helpline at 800.848.7097 and tell the specialist you would like to have a copy of the PLAYBOOK mailed to you.

Aging and Disability Services of Seattle/King County has generously provided the Alzheimer's Association with a grant to underwrite the cost of mailing the Playbook to residents of King County.

The Western and Central Washington State Chapter of the Alzheimer's Association is headquartered in Seattle and serves 23 counties. Our vision is "A world without Alzheimer's disease." Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. For more information about Alzheimer's disease, visit www.alzwa.org or call 800-848-7097.

Here is a great dementia resource for caregivers and healthcare professinals,

Here is information on being the best caregiver you can be

Here are more interesting dementia articles and activities,

Guilt and the family caregiver

Sharon Brothers MSW

When my kids were little, they'd get sick and I'd start stressing. Should I take them to the doctor? Should I let the bug run its course?

Either option seemed to generate a bucket full of guilt. If I called in to the advice nurse the advice was - without fail - bring them in. I'd get to the doctor, and hear what sounded to my ears something like, "Don't worry so much. All kids get bugs from time to time. Don't be such an anxious mom." The doctor would give me the "lots-of-rest-and-plenty-of-fluids" advice, and I'd be home thinking about the time I'd wasted and the expense of taking a kid to the doctor - again - who didn't really need to go.

So the next time a kid got sick I'd say, "We're going to just let this bug run its course. We'll get plenty of rest and lots of fluids. I'm sure in a day or two she'll be fine."

A day or two later, the bug is no better so I finally take the child to the doctor. This time I hear, "Oh my god. Why on earth did you wait so long to bring the child in? She could have died!"

No matter which choice I made, I felt profound anxiety and guilt.

Caring for our aged parents seems to be much of the same: equal parts anxiety and guilt, no matter what we do.

As I read about Brooke Shields' response to reporters finding out about her mom's move into an assisted living community I thought about guilt.

It's easy to let guilt guide our decision-making. It's easy - but not wise. Just like my parenting guilt could have led me to take the kids to the doctor with each sniffle and sneeze, I learned to accept that either decision would most likely result in guilt. And then I made the decision that seemed, based on the facts as I knew then, to be the most appropriate.

With our aging parents we need to make decisions based on facts, too. We need to set feelings of guilt aside and ask ourselves - and our loved ones - what best meets their needs.

When my mom needed 4 people to help her to the bathroom, I had no option. I felt guilty about helping her into a nursing home, but I would have felt guiltier - and been a less responsible daughter - if I would have brought her to my home and then left her with no one to help while I attended to my own work and family needs.

While we're not parenting our parents, we are making choices and decisions, often without their input, on matters that affect nearly every aspect of their lives.

Try these questions to help you check whether you're making decisions based on fact - or on emotions like guilt:

Who can help? If your parent moves into a care community, someone will always be available to help. Often, more than one person will be available. Usually someone will be awake and ready to help even during the night. In a good care community, those helpers are trained and supervised by experienced caregivers. If you choose to leave your parent at home - yours or theirs - can they get the same level of attention and care?

What's my role? Often I hear from family caregivers that are exhausted from nighttime demands, or from caring for their own family, doing their own work, and then trying to do the tasks their loved one needs. Sit down and chat? Go through an old family photo album together? Who has time for that?! If your caregiving tasks demand all the energy you have available, who can provide the companionship and company to your loved one?

Is there joy? I'm a profound believer in finding joy in caregiving. Yes, a lot of the care we provide to loved ones - whether 2 or 102 - not a lot of fun, but is necessary. At the same time, we find ways when we're bathing the baby to laugh, make bubbles and sing together. What about when we're caring for an elderly loved one? Is there joy being shared? Laughter? Find a way to discover the joy in the relationship, or get help with the tasks so you can find new ways to a joyful relationship.

Caregiving, like parenting, will naturally have moments of guilt, anxiety and despair. But if we're caring because we're family, caregiving can also be filled with deep satisfaction and joy.

Are you a new dementia caregiver?

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Help a man with dementia and the Alzheimer's Association this Father's Day

Dear Friend and Loyal Follower,

Here is a dementia book that is a great gift fora man with dementia on Father's Day

Finding the right gift for the man with dementia this Father's Day is easy. There are many wonderful items you can buy or make that will make the time you spend together meaningful.

A pefect dementia book for you to get is a book by Susan Berg called: "Adorable Photographs of Our Baby -- Meaningful, Mind-Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals". This book features baby photographs that men with dementia will love. This book shares a plethora of ideas and resources for you, the gift-giver. Men with dementia do love babies.

Thr author is donation a portion of the proceeds to the Alzheimer's Association
Another gift a dementia dad will fancy is a classic musical video or DVD. He will enjoy watching something from the good old days and singing the songs played throughout the picture. Here are a few suggestions: Top Hat, Swing Time, Follow the Fleet, or Shall We Dance.

Next is a sing a long CD or audio cassette of his favorite songs. One with Mitch Miller is a wonderful choice. You may want to get a sing a long video where loved ones can see and hear performers singing songs they love. A good seies is the Sing Along with Frank Woehrle series.

Here is another idea. Give him hand lotion, a manly scent, of course. Just be aware of any allergies or pain issues he might have. Give him a relaxing hand massage talking about how good the hand massage feels and maybe about the good old days, as well. Yes, men love hand massages

If you cannot afford or do not have time to get these gifts, give the gift of yourself. No matter how hard it is for you to visit, he will appreciate your company even though he may not be able to express it. Take him for a walk. Sing some favorite songs together. Give him a hand massage. Just share some quality time with him. You will both feel better.

Do remember to be upbeat animated and excited about visiting. No arguing, please.

These gifts are simple, inexpensive or free, and can be enjoyed by all.

Caregivers and healthcare professinals, dementia resource awaits your viewing


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Here is an interesting dementia activity

Lewy Body Dementia Webinar

Alzheimer's and Dementia Weekly

This live discussion on Monday, 15 June 2009, from 12 noon to 1 p.m. EST will be carried out in Webinar format and will feature short slide presentations by Ian McKeith, Brit Mollenhauer, James Galvin, James Leverenz, and Walter Schulz-Schaeffer, with audio provided via a telephone line. Lewy Body Webimar.

Dementia with Lewy bodies (DLB)—a disorder at the interface of AD and PD—competes with vascular dementia for second spot (after AD itself) on the list of most common causes of dementia among the elderly. If you just said “Huh!” to yourself, you are not alone. Most people wouldn’t know how frequent DLB is, judging by the vastly smaller amount of attention it receives across the board, from neurologists, psychiatrists, scientists, and funders. But this may be changing. Twenty years after DLB came to be recognized as a clinical and pathological category in its own right, a growing number of researchers from both the dementia and the movement disorder fields believe that AD and PD—formerly viewed as separate domains—are connected across a spectrum, and that DLB links the two. Investigators who formerly focused on one of the two established diseases at either end of the spectrum are now developing an active interest in this mixed disease. In DLB, patients suffer from various combinations of Alzheimer and Parkinson signs, which are compounded by frustrating fluctuations in symptoms, visual hallucinations, visuospatial impairments, and, in many cases, rapid decline. “DLB may provide a link between AD and PD that will help us understand both disorders better,” said Ian McKeith of Newcastle University, UK.

Since 1995, a series of targeted workshops have focused on DLB, and on its neighbor on the PD end of the spectrum (Parkinson disease dementia, aka PDD). The workshops have sharpened the clinico-pathological picture of these diseases to crisper definitions that are applicable in the clinic. Clinicians know now that DLB and PDD patients respond especially favorably to cholinesterase inhibitors as was predicted from their postmortem neurochemical pathology. This past March, the latest in this series of small meetings, held in the German city of Kassel, broke new ground by proposing working groups that are charged with hammering out a collaborative research agenda for both biomarker development and presymptomatic diagnosis. Another priority the scientists set is molecular pathogenesis research that aims to unravel how the three main proteins known to underlie this disease spectrum—amyloid-β, tau, and α-synuclein—conspire in various ways to drive an individual person’s disease. What’s more, a new player on the DLB/PDD/PD end of the spectrum recently burst on the scene in the form of glucocerebrosidase, an enzyme of lipid metabolism whose gene appears to underlie a significant number of cases, and whose modus operandi in disease urgently needs to be figured out.

The Alzforum this past week began an ongoing series of daily stories that summarize recent advances on this topic. They form the background material for this Webinar discussion. So that you can come armed with questions about the latest and greatest, consider reading the introduction about spectrum neurodegeneration, tau in Parkinson’s, dementia with Lewy bodies, oligomers in DLB, AD, brain imaging markers, fluid α-synuclein markers, fluid progranulin markers, Parkinson’s gene reshuffling (to be published Monday), GBA as DLB and PD gene (Tuesday).

Buoyed by such and other advances, the DLB/PDD scientists hope to disabuse the field at large, as well as physicians who see these patients, of the entrenched but quite possibly outdated notion that DLB is rare (they say it’s not), vague (ditto), of indeterminate relationship to AD and PD (ditto), and complex (yes, but tractable). Join us for slide presentations and subsequent discussion.

Here is a great resource dementia for caregivers and healthcare professinals,

Here is information on being the best caregiver you can be

Here are more interesting dementia articles and activities,

Alzheimer's Disease - Garden Grove CA (Clinical Trial 5582)

Clinical Connection

We are currently conducting a year long research study for participants diagnosed with Alzheimer's disease. Visits are typically once a month with compensation for qualified participants. Visits typically include meeting with neurologist, vitals, ecg, and possible laboratory panel.
Qualified participants must: • Be at least 50 years of age or older
• Have a caregiver (someone who sees the patient on a daily basis)
• Be currently taking Donepezil (Aricept) 10mg for at least 4 months
Participants will receive: Compensation for travel and participation, transportation to and from office (if needed), and medical attention and care.
Study is available at: CNS Network, Inc.
12772 Valley View St. #3
Garden Grove, CA 92845

If you meet the above criteria and live within 50 miles of this clinic please enter your information below and click “I Am Interested In This Study” to be contacted by the study coordinator.

Here is a great resource dementia for caregivers and healthcare professinals,

Here is information on being the best caregiver you can be

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Chess and Alzheimer's

ChessNinja.com
By Mig

In an interview with the local León paper, event organizer (since 1997) Marcelino Sión relates a conversation with Leontxo Garcia about chess as a means of combating Alzheimer's Disease. (Garcia has long promoted the benefits of chess in this area.) There are various studies about the effects of various cognitive pastimes -- crossword puzzles, sudoku, etc -- delaying the onset of Alzheimer's and other types of aphasia and deterioration of mental faculties. Sión relates Leontxo's question and I'll pass it on to you: Have you ever known of a strong chessplayer with Alzheimer's?

I haven't, and I would extend that not only to strong players but also to weak-but-dedicated amateurs who continued playing regularly deeply into their senior years. Surely that's a better test of the theory anyway. On the other hand, Miguel Najdorf, who was very strong well into his 70s, and quite clear-headed if rather cantankerous, was told by his doctors to stop playing speed chess because it was rough on his weak heart. Another plus for classical chess!

David Shenk's book "The Immortal Game" discussed this topic and he was interviewed about it on ABC News a few years ago. Video here, ChessBase article on it here. You can get more googling.

32 Comments
dmcw | June 5, 2009 4:58 AM | Reply
You cannot rule out the possibility that those who start developing dementia as they get older will stop playing chess. So the aged population of amateur chess players without dementia may be self-selected to be resistant. I think this is known as the "healthy worker effect".

Perhaps the Gandmaster anecdote is better. This obviously suffers from a smaller sample size and none of them will have "normal" brains, but they are selected at an early age when pre-dementia changes should not have happened.

I will not say too much, as I have not read any of the literature about this and so may be barking up the wrong tree.

Dan

chess and Alzheimer's

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New FDA approved medical food product to combat Alzheimer's Disease

Examiner.com

David Lindberg

When I first began reading about this new approach to fighting Alzheimer’s Disease, my first thought was that this was probably a vitamin supplement product, like the thousands of supplemental products that may or may not do what they promise. I started doing some research and discovered that there is actually an FDA category for medical food, which is what this new product is, named Axona. Axona is a product of Accera, Inc.

NOTE - (This is not an endorsement of a product, but a presentation of a new therapy in the fight against Alzheimer's Disease)

The first interview was with P. Murali Doraiswamy MD is professor of psychiatry at Duke University and co-author of The Alzheimer’s Action Plan.

Q1.) Can you tell me a little about Axona, what you’re role is in this discovery and what you’re general thoughts are about Alzheimer’s research going on right now?

The answer and much more

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Caring for a difficult parent

Sharon Brothers MSW

Are you a new caregiver?

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Brooke Shields shares
Her name was Kathy, and she visited her father, faithfully and unfailingly three times each week.

Her father had advanced COPD, which meant he lived on oxygen, and frequently had difficulty with even the smallest chore. I've heard advanced COPD described as a feeling of drowning, as breathing becomes more and more difficult.

Kathy watched her father struggle more and more to breathe with each week that passed. One day she stopped by my office; I'll never forget our conversation.

"My father was an alcoholic when I was growing up," she began. "I never remember a time when he acted like he even cared about us kids, let alone wanted to help us succeed in life.

"He was often violent and brutal to us. I lived in fear of him until I finally got out of the house to go to college."

Kathy told how she had distanced herself from her father and refused to let him become a part of her own children’s lives.

And then, somehow, the hospital had found her and contacted her when her father was admitted from home, no longer able to live alone and care for himself.

Kathy became the primary family caregiver. She helped her father move into our assisted living community, and she faithfully visited him three times each week. None of us knew about her history until that day when she finally shared it.

We cried together as she talked about her experience with an alcoholic dad, and the strange twist life took leaving her with the responsibility to now ensure his care.

I’ll never forget Kathy’s story, nor her brave efforts to build a relationship with a father with whom she’d never had a real relationship before.

Over the years, though, I learned that Kathy is not alone. Many, many adult children have become steadfast, loyal caregivers to parents who were never dedicated caregivers to them as children.

Brooke Shield’s story of caring for her mother who now has Alzheimer’s disease is just one high-profile example. Shields shares her painful decision to place her mother in an assisted living community after a reporter checked her mother out for lunch last week, causing Shields considerable anxiety and distress.

Shields had apparently planned to keep her mother’s move to the assisted living community private. It is personal, but here’s my message to Brooke and to the many other adult children of individuals with high care needs and strained relationships.

Do not be ashamed of finding a good care community for your loved one.

Be proud that you care enough to find good care for your loved one. Know that what you are doing – caring for a person who may not have cared best for you when you needed her most – is honorable and right.

I don’t know if I could have done what Kathy did, investing so much time and energy on a parent who made my childhood a living hell.

But Kathy’s caring – and Brooke Shields’ actions – give me faith that we can overcome our history and build relationships with our aged loved ones, and become better, stronger people as the result.

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Alzheimer's drug study in Orlando area offers hope to patients

Orlando Sentinal

An experimental drug, bapineuzumab, is being tested in the Orlando area and coordinated by Dr. William Honeycutt of Neurology Associates.

By Fernando Quintero | Sentinel Staff Writer

Sandra Thomas would have done anything to get her father back.

The Lake Mary resident lost him to Alzheimer's disease in 2007. During the final stages of the disease, she watched him slowly deteriorate from someone with a quick wit who played golf three times a week into a helpless man who could barely walk or speak.

"Alzheimer's stole my father from me. That's a tough thing to have to live with," Thomas said. "I want to find a cure for this terrible disease."

Although there is no cure for Alzheimer's disease, a new investigational drug aimed at slowing its progression is being tested in the Orlando area.

A call for people to take part in the study is offering hope to an estimated 40,000 Central Florida residents affected by the debilitating disease.

Current medications for Alzheimer's disease, a disorder characterized by progressive loss of memory and cognitive function as brain cells are lost, are mostly aimed at making the most of remaining brain activity.

Scientific evidence suggests........read the whole story

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Fife trials device to help dementia sufferers

Fife is to pilot a hi-tech device to help people with dementia enjoy safer, more independent lives.

STV
Fife is to pilot a hi-tech device to help people with dementia enjoy safer, more independent lives.

The scheme is to be run by Fife Council in partnership with NHS Fife and Fife Police.

John Honeyman, training and marketing adviser with Fife Telecare Programme, said in a statement: "Many people with dementia prefer to stay in their own home and live as independently as they possibly can.

"We aim to help our more vulnerable residents do this by offering technology that can manage many of the risks associated with independent living."

Family carers often feel that their relative with dementia might become lost while going out for a walk or even leave their house during the night and go missing.

Fife's Community Alarm Service has a tried and tested system that addresses this fear. Electronic door contacts give an early alert if someone with dementia leaves their home during the night.

Prompting from a specialist call handler over the alarm intercom system is often enough to encourage the person to stay safely at home until morning.

The new technology uses global positioning system (GPS) to locate someone carrying a sensor.

The matchbox-sized sensor gives confidence to someone with early-stage dementia to get out and about knowing that a family carer can offer assistance when appropriate.

Beth Wallace, from Kirkcaldy, whose father Jim started using his GPS device, explained that the family has much more peace of mind over his safety.

Although Jim suffers from early on-set Alzheimer's, he is determined to remain active and independent. He often travels on his own to Edinburgh and Glasgow.

Ms Wallace said: "With the GPS device I know exactly where he is. I can help look after him no matter where I am."

Inspector Jim Smith, NHS liaison officer with Fife Police, said: "Thankfully, very few people affected by dementia do go missing for extended periods of time but by introducing the technology at an early stage, we might prevent a distressing incident in the future."

Brittany Ellis, dementia strategy leader, said.......read the whole thing

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Is there a program to pay me for taking care of a family member?

Caring.com

by Joseph L. Matthews a Caring.com senior editor, an attorney, and the author of Long-Term Care: How to Plan & Pay for It and Social Security, Medicare, & Government Pensions: Get the Most Out of Your Retirement & Medical Benefits.
It's possible to get regular payments for providing care for a housebound family member, depending on the family member's income and assets, need for care, and the state he or she lives in. Public assistance programs in many states can provide payment directly to a low-income person who is determined to need in-home care. The person who receives this payment may use it to pay a relative, or anyone else of that person's choosing, to provide care. The care can be provided in the home of either the caregiver or the person who needs care.

This type of direct payment for in-home care comes from a program often called Cash and Counseling (though it has different names in different states). It is usually run through the state's Medicaid program. If your housebound family member has low income and few assets other than a home, he or she might qualify for Medicaid coverage of in-home care.

Normally, Medicaid would provide that kind of care through a certified home care agency. But these special programs instead directly pay the person needing care -- the payment is same amount Medicaid would pay an aide from a home care agency. The person receiving this payment may turn around and use it to pay a family member, or anyone else, to provide the in-home care. In many programs, the money may also be used to make home improvements for safety or comfort, or to buy personal care items


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Virtual dementia demonstration in Fort Myers

news-press.com

Step inside the mind of an Alzheimer's patient
By JENNIFER BOOTH REED • jreed@news-press.com •

Caregivers of Alzheimer's disease patients can get a glimpse into the deteriorating worlds of their loved ones Thursday at a dementia demonstration in Fort Myers.
The Virtual Dementia Tour replicates the sensory loss that victims of Alzheimer's and related diseases experience. The simulator will be at Magnolia Park at Health Court, a skilled nursing facility for dementia patients.

Neuropsychiatric Associates, a Fort Myers medical practice and research center operated by Dr. Frederick Schaerf, is organizing the event. It is financially sponsored by Abbott Labs.

"You've got to remember they are not perceiving the same things we are," said Melissa Schaerf, director of the practice's research division. "(The simulator) allows the family member or caregiver to actually experience what it's like."

The event will feature a mock bedroom and challenge participants to get out of bed and move about the room. Following the virtual tour, participants can talk to Dr. Schaerf and representatives from organizations such as the Alzheimer's Association and Alvin A. Dubin Alzheimer's Resource Center.

Alzheimer's affects....read the whole post

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Study Finds Caregivers Are Struggling Even More During Recession

The ledger

By Fernando QuinteroThe Orlando SentinelORLANDO | Looking back, Tom Brinkmoeller is glad he and his wife took that day in 1969 - two years after they were married - to look at their financial situation.

"We said to ourselves, 'Holy cow!' " recalls Brinkmoeller. "I wasn't doing a very good job at keeping the books, and she took over from there." Forty years later, Linda's financial-planning abilities have been put to the test.

Brinkmoeller left his job as marketing director for Orlando Opera to care full time for Linda after she suffered a stroke in 1999. To pay her medical bills and their other living expenses, they rely on her Social Security disability payments, have dipped into their 401(k) savings and are planning to take out a reverse mortgage on their home in an Orlando suburb.

A study shows family caregivers such as Brinkmoeller are facing increased financial and emotional hardships as they struggle to continue providing care to loved ones with chronic illnesses or disabilities.

The survey, conducted by Evercare, a national care-coordination program of UnitedHealthcare, and the nonprofit National Alliance for Caregiving, reveals that more than 40 percent of caregivers have taken a pay cut or have been forced to work fewer hours as a result of the recession. Fifteen percent of caregivers have lost their jobs as a result of the downturn. And nearly half of all caregivers have exhausted their savings.

Linda's stroke was not the last of the Brinkmoellers' health troubles. Last year, she was diagnosed with breast and ovarian cancer. And four months ago, Tom was diagnosed with prostate cancer. Meanwhile, the economy continued its downward spiral.

Brinkmoeller says all the financial planning in the world wouldn't have helped him prepare for these unexpected turn of events.

"The recession has had a huge impact on caregivers, who represent a $375 billion annual value in the care they provide," said Heidi Wold, executive director of Evercare Florida. "In Florida, they represent $20 million in care costs that would otherwise be passed on to the health-care system."

Nationwide, there are.....read the whole article

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Exelon Patch: Less is Better

Alzheimer's and Dementia Weekly

Sometimes less is more: Lower doses of an Alzheimer’s drug delivered via skin patches improve cognition with fewer serious side effects than higher doses, researchers have found in an updated review.

The drug is rivastigmine, known in the U.S. by its brand name, Exelon.

“Is there any advantage of giving patients higher doses of rivastigmine? There doesn’t seem to be any,” said lead review author Jacqueline Birks, senior medical statistician for the University of Oxford, in England.

Previous studies had shown that high daily doses of rivastigmine (also known by its brand name, Exelon) of between 6 and 12 milligrams improved cognitive functions, such as memory, language and ability to perform simple daily living tasks, in patients with mild to moderate Alzheimer’s disease.

However, adverse events often.......read the whole story


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