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ENHENLEY11

Mom and her teens care for dad with early onset Alzheimer's

Alzheimer Henley

An English professor struggles to write a sentence. An accountant cannot balance a checkbook. A mechanic does not understand how to use a fork. A mother no longer recognizes her children. 
The face of Alzheimer's disease may vary. It is an affliction that knows no racial, social or intellectual boundaries, and each individual who suffers from it may display different symptoms and behaviors. But its conclusion remains the same and for those who watch their loved ones suffer from the disease, the journey is one of unending sacrifice, financial struggle and emotional pain. 
There is no cure for Alzheimer's. It is a degenerative, fatal disease and the most common cause of dementia, accounting for 60 to 80 percent of all cases. Alzheimer's is most prevalent in those over the age of 85, but five to 10 percent of all cases occur in those under 65 in what is called early or young-onset Alzheimer's. 
There are more than 35 million people worldwide with Alzheimer's and 5.3 million people in the <a href="/topics/United_States">United States</a>, according to the Alzheimer's Association, with more than 55,000 cases on Long Island. But experts warn that those numbers may actually be double, as many individuals go through this disease without ever receiving an official diagnosis. 
Most worrisome, experts said, are the decades ahead. The Alzheimer's Association estimates that the disease costs this country $148 billion annually. By 2050, as the baby boomer generation ages, the number of Alzheimer's patients is expected to surge to between 11 million and 16 million in the <a href="/topics/United_States">United States</a> and to 115 million worldwide. When those who work in the field of dementia talk about the impact this will have on our health care system, one word is repeatedly used: tsunami. 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys (photos may be extremely emotional) </a> 
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<a href="http://longisland.newsday.com/projects/alzheimers/">&gt;&gt;MULTIMEDIA: Click here to see videos, photos, stories of Alzheimer's patients and caregivers, timelines, and more</a> 
"I don't think the government or society is getting it yet," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Geriatric Center in Glen Oaks. "And if they don't, we are about to crush the health care system because there's no way they'll be able to provide the array of services that's required to maintain these guys." 
The <a href="/topics/National_Institutes_of_Health">National Institutes of Health</a> spent $412 million on Alzheimer's research in 2008 and estimates spending $423 million in 2009. But federal funding for Alzheimer's research has remained relatively stagnant in recent years and a fraction of what is allocated for other diseases and afflictions even though Alzheimer's is the sixth leading cause of death in the <a href="/topics/United_States">United States</a>. Since 2004, members of both the House and <a href="/topics/U.S._Senate">Senate</a> have attempted to introduce legislation increasing Alzheimer's funding to more than $1 billion. This year's version of The Alzheimer's Breakthrough Act seeks to bump NIH funding for the disease to $2 billion. 
"I believe the difference is our population can't march into Washington, D.C., and stand on the Capitol steps and demand funding," said Eric Hall, president and chief executive of the Alzheimer's Foundation of America. "The people who have the disease aren't coming, and the families are too busy giving care. This population doesn't have a loud bark, which generally gets the attention." 
Part of the problem is that although it has been more than 100 years since German psychiatrist Alois Alzheimer first described the disease, scientists are still uncertain about the cause of Alzheimer's. 
The key components of Alzheimer's appears to be the development of plaques - a buildup of protein deposits between nerve cells called beta amyloid - and tangles - fibrous entanglements consisting of a protein called tau that form inside nerve cells. Although everyone develops scattered plaques and tangles in their brains as they age, it is the overwhelming abundance that is so striking in people with Alzheimer's. These toxic proteins annihilate nerve cells. Although the common perception is that Alzheimer's disease involves memory loss, the death of brain cells eventually affects every function the brain controls, including swallowing and breathing. 
There are three medications now available to slow the progression of some symptoms of the disease, although there are side effects and the drugs' effectiveness varies for each individual. <a href="/topics/Peter_Davies">Peter Davies</a>, director of the Litwin-Zucker Center for Research in Alzheimer's Disease and Memory Disorders in Manhasset, said this is an exciting time in Alzheimer's research and estimates that every pharmaceutical company in the world as well as some biotech companies are working on a form of drug to battle the disease's progression. 
"What I think we will be able to do over the next five to 10 years is slow the rate of progression," Davies said. "So you really have a group of patients on a drug who look a lot like me, still somewhat forgetful, not entirely sharp and there, but relatively functional both in a social and an occupational way." 
For the families in the throes of caregiving, the how and why of Alzheimer's matter less than the here and now. Trying to get a definitive diagnosis is often the first stumbling block. Experts say there is a dire need for more early diagnosis, but primary care physicians - often the first stop for patients - are rarely trained in dementia. In fact, they say, medical schools rarely offer more than a lecture on Alzheimer's. Similarly, nurses and home health aides are often unaware of the progression of the disease or how to approach Alzheimer's patients. 
"There needs to be education," said Darlene Jyringi, program director at the Alzheimer's Disease Assistance Center of Long Island at Stony Brook University Medical Center. "From the aide right through the physicians . . . there is a need for training." 
According to the Alzheimer's Association, there are 9.9 million unpaid caregivers in the <a href="/topics/United_States">United States</a> providing care valued at $94 billion. Depending on the individual and at what stage the person is diagnosed, the disease can last anywhere from two to 20 years, experts said. Once an Alzheimer's patient moves beyond the early stages, caregiving can become emotionally and physically strenuous. Loved ones suffering from the disease may wander, become aggressive or violent and eventually require 24/7 care, including medication management, dressing, toileting and feeding. 
"Of all of the diseases, I think dementia is the one that will tear families apart over time because even if you can handle it at one point in the disease, it doesn't mean you can handle it at another point and another point," said Teepa Snow, a dementia care specialist and trainer who travels the country giving presentations to caregivers and professionals. 
The strain often leads to caregivers becoming ill themselves, oftentimes dying before the patient. Emotionally, caregivers also bear the weight of having a loved one lose all memories of a spouse or child, experience a change in personality and slowly lose control of their functions. 
"We refer to this illness as a journey of grief," Vogel said. "The families mourn the entire journey with this illness, every time they see another decline." 
On Long Island as in many communities, some families are also part of the "sandwich generation" of caregivers, those trying to raise their own families while caring for a parent. 
"Previous generations didn't face this same challenge," said Elizabeth Geary, director of Day Haven Adult Day Services in Ronkonkoma. "While they might have provided care for grandma at home, grandma died at a much younger age and the caregiving didn't go on for years and years and years. It's a whole different challenge for families now." 
Caregivers also struggle financially. Placing a loved one in an assisted living or nursing facility can cost from $6,000 to $14,000 a month on Long Island. Trying to keep a patient at home can be less expensive but still a hardship, at tens of thousands of dollars a year, experts said. Medicare pays for limited home services after hospitalization, and middle-class families often earn too much to qualify for the more extensive coverage provided by Medicaid. The only other options, experts said, are either spending down to meet Medicaid requirements or private-pay, which can quickly wipe out long-collected savings and retirement accounts. The current recession, which has forced the closure of certain community-based programs, such as adult day care, has only heightened the need for more services. 
"At the end of the day the problem is that families who are caring for someone with Alzheimer's disease need support on a daily basis," said Fred Jenny, executive director of the Long Island Alzheimer's Foundation in Port Washington. "These are services that enable their loved one to stay in the community. They can't defer that care until we get better economic times. So it's not like delaying buying a car. When you need the services, you need the services." 
Those who advocate for more services and funding said they take comfort in seeing an increase in awareness of a disease often referred to as a "silent epidemic." But they also caution that caregivers require more assistance starting now, before the numbers rise and the need reaches catastrophic proportions. 
"I think in another couple of years we might be able to say something more positive because the research is moving in a positive direction," said Mary Ann Malack-Ragona, executive director and chief executive of the Long Island chapter of the Alzheimer's Association in Ronkonkoma. "But right now there's not a lot of hope that we're going to be able to fix any of the issues and they [caregivers]know, there's a realization that these issues are only going to get worse because the disease process is going to continue to get worse." 
<a href="http://longisland.newsday.com/projects/alzheimers/?DOM_id=alzheimers-reporters-cp">&gt;&gt;MULTIMEDIA: Click here to go behind the scenes with reporter Denise Bonilla and photographer John Williams</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q="> Click here to search our resource guide for Alzheimer's groups, topics and Web sites</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-alzheimer-s-a-z-1.1488801"> Click here for Alzheimer's A-Z: Answers to all your questions</a> 
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ENINTROFULL

Alzheimer's tsunami poised to hit Long Island

Karen Henley continues to care for her husband, Mike, at home. Now in his eighth year of the disease, Mike's health continues to slowly decline. He has lost weight and seems to eat more slowly, but he is holding his own for now. Karen continues to worry about his comfort, never wanting him to feel scared or alone. 
In June, Courtney graduated from high school and is now living on campus at <a href="/topics/Hofstra_University">Hofstra University</a>. Even though Courtney received a substantial scholarship, her mother still pays $13,000 a year toward tuition and other costs. The family's rocky financial situation prevented Courtney from attending her dream school, <a href="/topics/Fordham_University">Fordham University</a> - which would have cost $15,000 more per year, Karen Henley says - but Courtney is still working toward her goal of becoming a film director. 
Brandon, who is now a high school junior, has become Karen's second-in-command of caregiving, helping her get Mike ready for bed at night. He has taken on the role with pride and is also forging ahead with his dream of becoming a doctor. 
"There are times that I feel like a failure, for not being there for them 'full time' when they needed me," Karen says of her children. "I second- guess myself all the time, even though Courtney and Brandon tell me they wouldn't have it any other way. I feel like we all missed their childhood." 
Karen continues to struggle to pay the bills and keep her home afloat. On her most trying days, she credits her faith in God as the reason she manages to keep going. 
"I know we will come through this stronger, but these eight years have taken their toll," she says. "I pray that Courtney and Brandon will do well in college and that they are able to pursue their dreams."

ENUPDATE11

A challenging 8 years for Henley family

liALZHENLEYjcw

July 1985 - Karen and Mike Henley begin dating. 
December 1985 - Mike’s mother is admitted to the hospital and a brain biopsy is done. She is diagnosed with Alzheimer’s disease. 
October 1988 - Karen and Mike get married. 
September 1991 - Courtney is born. 
August 1992 - Mike’s mother passes away at the age of 51. 
May 1993 - Brandon is born. 
August 2000 - Mike, Karen and the kids travel to <a href="/topics/Pennsylvania">Pennsylvania</a> and Mike forgets where Courtney is. Karen call this the moment that “my life changed forever.” 
September 2000 - Mike begins seeing a neurologist and undergoing tests, all of which appear normal. 
December 2000 - Mike is fired from his job of 13 years due to poor performance. 
January 2001 - Karen takes Mike to a psychiatrist, thinking he might suffer from depression. 
February 2001 - Mike finds another job. He is fired a month later. 
April 2001 - Mike goes for further neurological testing and is diagnosed with Early Onset Alzheimer’s disease. 
Fall 2003 - Mike begins showing anger and agitation. 
May 2004 - Mike punches a hole in the kitchen wall after getting angry at Karen’s mother and is admitted into a psychiatric facility. Mike spends the entire summer at the facility as his medications are adjusted. When he gets out, he has lost many of his functions and Karen begins using a home health aide. 
Spring 2005 - Mike is rushed to the hospital with multiple pulmonary embolisms. Short after he has his first grand mal seizure. 
December 2006 - Mike is rushed to the hospital on <a href="/topics/Christmas">Christmas</a> morning for a collapsed lung and blood clots. He has surgery for the collapsed lung but when his condition does not improve, he is given last rites. 
 Spring 2008 - Mike has multiple seizures and is rushed to the hospital where he has his medication adjusted. He will have several more hospitalizations in the following months for unexplained fevers and blood clots. 
September 2008 - Karen enrolls Mike into home hospice care. 
December 2008 - Mike is hospitalized for congestion and fever. 
June 2009 - Courtney graduates from high school. 
August 2009 - Mike is hospitalized for a urinary tract infection. Courtney begins college.

ny-enlifeline-story

Henley family’s near decade of dealing with disease

Follow the daily routine of an Alzheimer’s caregiver. In the span of her 17+ hour day, Karen Henley, 48, must juggle work, raising two teenage children and providing care for her husband Mike, 44, who is in the late stages of Alzheimer’s and cannot care for himself. (Note: The following timeline is an approximation and not necessarily reflective of their current routine). 
 6:00 a.m. - Karen and her two children, Courtney and Brandon, get up. Karen helps them with any last-minute homework and helps get them ready for school. 
7:30 a.m. - As the kids leave for school, Karen prepares Mike’s breakfast and morning medicine. Breakfast consists of pureeing pancakes, oatmeal, or French toast with a banana. Then Karen makes Mike’s drink for the day: a bottle of Gatorade thickened with Thick-It so that he can swallow the liquid without aspirating. 
8:30 a.m. - Mike’s home health aide arrives. If the aide is out sick, Karen must take a day off from work. The aide gives Mike a sponge bath, changes his adult diaper and gets him dressed. 
9:00 a.m. - Karen and the aide transfer Mike from the bed to his geriatric chair. It is a two-person job: one person stays at Mike’s shoulders to push and support him, the other person must be at his legs to help pull him down and into a sitting position. Karen usually leaves for work sometime between 9-10 a.m., depending on when Mike is ready. 
9:15 a.m. - Mike begins eating his breakfast and takes his medicine. It can take two hours for Mike to finish his food and the three glasses of his specially-mixed drink that he must consume in order to avoid dehydration. 
12:00 p.m. - The aide shaves Mike. 
12:30 p.m. - Mike is moved from the geriatric chair into a hospital bed in the living room via a hydraulic powered-sling called a Hoyer Lift. The aide cleans and changes Mike. 
1:00 p.m.- 3:30 p.m. - Mike naps. 
3:30 p.m. - The aide cleans and changes Mike and he is taken from the bed back to his geriatric chair via the Hoyer Lift. 
4:00 p.m. - Mike begins eating dinner. His meal consists of pureed meat, potato and a vegetable. Karen purees all of his dinners on Sunday night, places them in individual containers and freezes them for the week, a process that takes nearly an hour and a half. 
5:00 p.m.-5:30 p.m. - Karen comes home and begins preparing Mike’s nighttime medications. Mike drinks another three glasses of his specially-mixed drink. 
5:30- 6:00 p.m. - The aides leaves for the night and Mike takes his medications. 
6:00 p.m. - Karen starts dinner for her and the kids. 
6:30 p.m.-7:30 p.m. - Karen and the kids eat their dinner in the living room, next to Mike. The family watches television and talks about the day. 
7:30 p.m. - Karen and the kids wheel Mike back into the bedroom and lift him into bed. 
8:00 p.m.-8:30 p.m. - Karen cleans and changes Mike and gets him into his pajamas. She puts on an oxygen mask and either one of the kids or Karen stays with him in bed until Mike falls asleep. 
9:00 p.m.- 9:30 p.m. - Karen cleans up the kitchen, puts away wash and walks the dog. 
9:30 p.m.- 11 p.m. - Karen and the kids talk and watch television. They check on Mike, every 15 minutes, to make sure he is OK. The began checking up on him more frequently the past couple of years, after an incident where Mike rolled over onto a down pillow and nearly suffocated to death. 
11 p.m. - Karen goes to bed beside Mike. Karen rarely gets a full night of sleep. She will often get up several times during the night to change Mike, check his temperature and make sure he is comfortable.

ny-entimeline-story

A day in the life of a caregiver: The Henleys

The job of caregiver is one of endless struggle, and those who work with Alzheimer's caregivers say it is a struggle that is too often ignored by policy-makers. 
Now, with experts predicting a surge in the number of Alzheimer's cases in the coming decades, advocates worry that the needs of patients and caregivers could overwhelm the health care system. 
"We don't have enough infrastructure right now to handle what we have," said Eric Hall, president and chief executive of the Alzheimer's Foundation of America. "If we're not ready for what we've got ... when do we start building an infrastructure for what we know is coming?" 
The six families profiled in Newsday's recent Alzheimer's series represent only a tiny fraction of those struggling against the disease while grappling with government services and the health care system. 
There are about 5.3 million Americans with Alzheimer's - 55,000 on <a href="/topics/Long_Island%2C_NY">Long Island</a> - and nearly 10 million caregivers. Estimates are that by 2050, Alzheimer's cases will surge to as much as 16 million. 
Alzheimer's is a degenerative, fatal disease and the most common cause of dementia. It is most prevalent in those over 85 - where it may strike 1 out of 2 people - but 5 percent to 10 percent of all cases occur in those under 65 in what is called early- or young-onset Alzheimer's. 
There is no cure but researchers hope in the next 10 to 15 years to find new ways to stave off the disease's progression. 
"What are we going to do for the next 15 years or more?" asked Hall. "How do we support those people?" 
Change from ground up 
Those in the field want to see change from the ground up, starting with physicians. 
"The field has now reached about 7,000 certified geriatricians for a country that needs at least 14,000 and will need in excess of 30,000 within the next two or three decades," said Dr. Gisele Wolf-Klein, director of geriatric education for the North Shore-LIJ health system. 
To that end, Wolf-Klein said many geriatricians are acting as mentors to other doctors, teaching them about elder care. Hall said his group is also creating an advisory board to make curriculum recommendations to medical schools. 
Mary Ann Malack-Ragona, head of the <a href="/topics/Long_Island">Long</a> Island chapter of the Alzheimer's Association in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>, is working with the New York State <a href="/topics/Department_of_Health">Department of Health</a> to examine a possible additional level of care for dementia patients. Right now, hospitals and facilities such as nursing homes are unable to care for a dementia patient who exhibits aggression. Instead they are often sent to psychiatric wards. 
Malack-Ragona is also part of the state's Alzheimer's disease coordinating council. The council was formed in response to town-hall forums held by the state <a href="/topics/Department_of_Health">Department of Health</a> last year to assess caregivers' needs. Some issues they are looking into include: increased home health care training, mandated cognitive testing as part of a physical exam, and streamlining the process of Medicaid assistance. 
The Alzheimer's Association estimates 9.9 million people in the United States are unpaid caregivers providing care valued at $94 billion. For families, the cost of caregiving can be devastating. Assisted living and nursing facilities cost $6,000 to $14,000 a month on <a href="/topics/Long_Island%2C_NY">Long Island</a>. 
Keeping a patient at home can run tens of thousands of dollars a year. Medicare pays for limited home services after hospitalization, and many families earn too much to qualify for Medicaid coverage. 
Slow response so far 
Advocates say response to the Alzheimer's crisis on both federal and state levels has been slow. Long-term care and cognitive issues were largely absent from the debates over health care reform, experts say. One of the more ambitious bills that has not been acted on would create an Office of National Alzheimer's Project within the <a href="/topics/White_House">White House</a>, coordinating research and care. 
On <a href="/topics/Long_Island%2C_NY">Long Island</a>, Malack-Ragona is trying to raise money to create an Alzheimer's resource center. The center would include a cafe, recreation area and classroom space for training programs. She hopes to have doctors, lawyers and social workers available. Malack-Ragona said the association has raised $1 million but still needs another $2.5 million. 
Fragmented network 
The eldercare network is still extremely fragmented, said Fred Jenny, executive director of the Long Island Alzheimer's Foundation in <a href="/topics/Port_Washington%2C_NY">Port Washington</a>. Caregivers remain isolated, he said, and often wait for a crisis before reaching out for help. 
"What ultimately happens is the family member can't cope and the person needs to be placed," Jenny said. "We don't have enough nursing home beds and assisted-living beds to take care of everyone who's going to need that care. So we're going to have to put a lot more emphasis on being supportive of the family caregiver and giving them assistance in maintaining their loved one in the community." 
TO READ Newsday's series on Alzheimer's disease and caregivers, and to see photographs and video of the six families profiled in the series, go to newsday.com/<a href="/topics/Alzheimer%27s_Disease">alzheimers</a>. The Web site also contains nearly two dozen articles on various aspects of the disease, a comments section, a link to our <a href="/topics/Facebook_Inc.">Facebook</a> page where people can leave tributes to loved ones and a searchable database of hundreds of local resources and links to Web sites containing more information about Alzheimer's. 
TO FIND help locally, call the Long Island Alzheimer's Foundation at 516-767-6856; the Long Island chapter of the Alzheimer's Association 631-580-5100, or its 24-hour helpline at 800-272-3900; or the Alzheimer's Foundation of America 866-232-8484. 
TO TAKE PART in the Nov. 22 C.A.R.E Day Symposium at the Sid Jacobson Jewish Community Center in <a href="/topics/East_Hills%2C_NY">East Hills</a> - an all-day educational program for professionals in the field of aging and those who are caring for a loved one with dementia - call 516-484-1545. 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q="> Click here to search our resource guide for Alzheimer's groups, topics and Web sites</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-alzheimer-s-a-z-1.1488801"> Click here for Alzheimer's A-Z: Answers to all your questions</a>

ENCARE12

Alzheimer's could overwhelm health care system, experts say

ENHARRIET18

Alzheimer's hits a couple after half-century of marriage

Harriet Garzero

ENPARENTS

Ravages of Alzheimer's turn children into parents

Thomas Rowe

ENBOB01

Alzheimer's: A devoted husband says goodbye

Alzheimer's Schreibman 7

ENGLORIA01

Love, long bus rides and Alzheimer's 

Gloria Richmond

The offers started coming in Sunday morning. As readers picked up Newsday and saw Karen Henley's story of caring for her husband, Mike, who was diagnosed with Alzheimer's at age 36, many felt the need to do something, anything, to ease her burdens. 
"The most surprising fact about all this is how much people really care," said Karen Henley, who lives in <a href="/topics/Westbury%2C_NY">Westbury</a>. "Everyday people, who are struggling themselves, just want to reach out to help. I didn't think that many people cared about Alzheimer's disease, but I think Mike's age shocked everyone." 
Henley, along with her two children, Courtney, 18 and Brandon, 16, has been caring for her husband for eight years. Now in the later stages of the disease, Mike is immobile and nonverbal, unable to feed, wash or dress himself. Sunday's story, the first in a Newsday series on Alzheimer's and caregiving, gave readers a look at life inside the Henley home, including the financial and medical struggles. 
Readers reacted. Visits to Karen's blog have skyrocketed since the story ran. The family has already received money as well as meals. There have also been offers to come by and help with Mike Henley, walk the family dog, clean the house and go grocery shopping. Newsday has also received many phone calls and e-mails from people wanting to help the Henleys with money, food, clothes, adult diapers - even Courtney Henley's tuition costs at <a href="/topics/Hofstra_University">Hofstra University</a>, where she is a freshman. 
"I am deeply touched that so many people have reached out to express their comfort at seeing the love and compassion my family has for Mike," Karen Henley said. 
Local Alzheimer's groups have also seen an increase in phone calls and e-mails since the series started, with some looking to help the Henleys and others seeking information and advice for their own situation. 
"The Newsday articles have come up in our caregiver and client support groups," said Tori Cohen, a social worker at the <a href="/topics/Long_Island%2C_NY">Long Island</a> Alzheimer's Foundation in <a href="/topics/Port_Washington%2C_NY">Port Washington</a>. "Caregivers have expressed the hope that the heightened awareness from the articles might lead to positive action to help families living with the disease, particularly surrounding the financial crunch that many caregivers experience." 
A woman wrote Karen that she understood the need for "many hands" to help carry the burdens she faces and offered to help with the cooking, cleaning and shopping. A man called Newsday to say that he has terminal cancer and is living on food stamps but, after reading about the Henleys' struggle, wanted to donate whatever he could spare, since he too knows about struggle. 
"What amazes me always is that the people that don't have are the people willing to help," Karen said. "Younger families face unique obstacles and hardships and I sincerely thank everyone, from the bottom of my troubled heart, for trying to lift our burdens." 
Those looking to help the Henleys or any of the other families featured in Newsday's series should earmark their donations for a specific family and send them to the Alzheimer's Association, 3281 Veterans Memorial Hwy., Suite E13, <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma, NY</a> 11779, or call 800-272-3900. 
<a href="http://www.newsday.com/news/health/alzheimers/a-challenging-8-years-for-henley-family-1.1504104">&gt;&gt;UPDATE: Click here for an update on the Henley family today</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">&gt;&gt;MULTIMEDIA: Click here to see videos, interactive graphics, more stories of Alzheimer's patients and caregivers, timelines and more</a> 
Join us at noon on Thursday, Nov. 5, at newsday.com for our next live chat about Alzheimer's disease. Until then, scroll down and click on the box to read the questions and answers from our previous chat. 
<iframe scrolling="no" height="550" frameborder="0" width="470" src="http://www.coveritlive.com/index2.php/option=com_altcaster/task=viewaltcast/altcast_code=86ba1c19da/height=550/width=470">&lt;a ( 'http://www.coveritlive.com/index2.php/option=com_altcaster/task=viewaltcast/altcast_code=86ba1c19da/height=550/width=470" ) href="http://www.coveritlive.com/mobile.php?option=com_mobile&amp;task=viewaltcast&amp;altcast_code=86ba1c19da"&gt;Alzheimer's ( http://www.coveritlive.com/mobile.php?option=com_mobile&amp;amp;task=viewaltcast&amp;amp;altcast_code=86ba1c19da&amp;quot;&gt; ) on Long Island live chat&lt;/a&gt;</iframe>

Long Island

Nassau

ENFOLO16

Readers reach out to Alzheimer's patients, caregivers

Henley

As the disease process worsens for those with Alzheimer's, loved ones often have to make a decision about how they will handle additional care needs. A common first step is to bring in a home health aide, although accepting outside help can be difficult for patients at first. 
"It's a lot to ask someone to open up their door to strangers when they already feel vulnerable," said Karen Headley, 52, of <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a> who struggled to persuade her mother to let an aide come in several times a week. 
The aides may work a few hours a week or become live-in caregivers. For many families, these aides become not only a crucial part of a loved one's care but also close, trusted friends. For these aides, taking care of others, and in some cases, particularly taking care of those with dementia, is thought of as a calling. "I love to take care of people and make them feel like themselves and know they're not alone," said health care worker Joan Parker, 52, of <a href="/topics/Queens%2C_NY">Queens</a>. 
For other families, trying to find and hold onto properly trained and motivated aides becomes an exercise in frustration. Caregivers speak of home health care workers who show up late, or not at all, who steal or use items and eat food in the house without asking. 
"I've had things taken from me," said Ellen Smith, whose husband, Irwin, has Alzheimer's. "I've had people use things in my house, like my washer, dryer, without even asking. And you just don't know who's in your house with you. Every week there's different people coming in and out of here. It's very difficult." 
In addition, finding aides who are knowledgeable of dementia and how to properly approach and engage patients is extremely rare, caregivers said. "I have asked the agency, do you have someone with experience, and they don't," said Smith. "They don't get training in taking care of Alzheimer's patients. Most have no experience at all." 
Some caregivers also become frustrated with the high turnover in aides, something that leaves many patients confused by the parade of new faces that come through the door. 
"As soon as he gets adjusted to one, wham! They call me up and tell me another one is coming," said Mary Williams, 66, of <a href="/topics/Elmont%2C_NY">Elmont</a> of the caregivers for her husband, Calvin, who has Alzheimer's. "And I tell them you can't keep doing this because it takes him a while to warm up and adjust to the person . . . But they all want more hours, and we can't get more hours." 
Aides need a certain number of hours to qualify for health benefits, but many caregiversare limited by Medicaid in the number of aide hours they receive per week. 
The job is also low-paying. <a href="/topics/Forbes_Magazine">Forbes Magazine's</a> annual list of the 25 worst-paid jobs in America always includes home health care aides. This year, the profession ranked No. 13 on the list, with an average salary of $19,690, behind short order cooks, parking lot attendants, maids, gas station attendants and bartenders. 
"It is one of hardest jobs anyone can have, and yet it is one of the lowest paid and least recognized," said Mary Ann Malack-Ragona, executive director and chief executive of the <a href="/topics/Long_Island%2C_NY">Long Island</a> chapter of the Alzheimer's Association in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>. "We need to change that, there's no question about it." 
Taryn Birkmire, executive director of Recco Home Care Service, Inc. and president of the <a href="/topics/Long_Island%2C_NY">Long Island</a> chapter of the <a href="/topics/New_York%2C_NY">New York</a> Association of Health CareProviders, a trade association, said she doesn't think there is a lack of dementia-care training in aides. "I think we're all doing the very best we can with the means we have to work with," she said. 
Home health aide services are formed by a doctor writing an order and a nurse creating a care plan that tells the aide what to do each day, Birkmire said. Aides cannot do anything that is not specifically listed on the care plan. 
At the end of each day, the aide reports the tasks that she did that day. If an aide notices a change with a patient's condition, the nurse often will consult with the physician and bring the family in to all discuss the next course of action, she said. If there are complaints about the aides, a nurse supervisor will work with the aide to bring them up to par, she said. 
"I think it's really a team approach and how each agency addresses it in their policies and with their health-care team," Birkmire said. "We do everything possible to keep the patient home for as long as possible." 
The state department of health has a standardized curriculum for training, Birkmire said, set at 75 hours, including 16 hours of supervised practical training, with eight of those hours required to be in a patient care setting. These guidelines are generalized and not specific to any one condition, such as dementia. But, Birkmire said, "Many agencies extend their training above and beyond what is required just to make sure their aides are trained properly." 
Nancy Hendley a dementia-care trainer for the <a href="/topics/New_York%2C_NY">New York</a> City chapter of the Alzheimer's Association, disagrees. 'These guys have no training," she said. "They have a three hour video that they watch one day. That's all that's required." 
"But if you call an agency and ask if they have dementia training, they'll say yes," she said. "It's not the aides' fault that they don't have training because they don't get the training but the family thinks they should and do. So it's a very bad situation." 
Hendley calls the current system "Draconian" and thinks proper dementia training should be mandated at the state level. "It's criminal to send people in when they don't have training," she said . "And family members get furious about it, and who do they get furious at? Them [the aides]. So then they get a bad reputation and family members have a bad reputation with them. It's a very poor system." 
Hendley is doing her part to prepare workers in the field by teaching a six-week training course for professional caregivers at the <a href="/topics/Manhattan">Manhattan</a>-based New York City chapter of the Alzheimer's Association.In a recent session, Hendley demonstrated how to help dementia patients sip from a glass of water. Rather than shoving the glass in the person's face and forcing them to drink - a move often met with resistance - Hendley shows the health care workers how to have the patient grip the glass so that the aide merely guides it, and the patient stays in control of the water. 
Hendley has the workers act out both ways of doing it, having them experience for themselves the sensation of being fed water involuntarily and then being allowed to control it themselves. 
"So much of this kind of work, people are just doing things to people," Hendley said. "It's not empowering for the person with the disease, it doesn't give them dignity and respect." 
The exercises she does with the health aides aims to give patients the ability to function at their optimal level, she said. 
The course is 50 hours total, with training taking place for eight hours, one day a week. Those who attend are motivated to make a difference, Hendley said. "The compassion and the love you see in here will make you cry," she said. 
Home health aide Cyrina Murrey, 42 of <a href="/topics/Brooklyn_Bridge%2C_NY">Brooklyn</a> said the methods she learned "could get you through a lot of tight spots." 
Murrey said she wants to broaden her experience further by doing volunteer work with dementia patients. "I think this may be my calling in life," she said. "You have to like it to do well at it." 
The unique characteristics of dementia require specialized training, Hendley said. It is a disease that looks very much like mental illness, she said, and it can present itself differently in each patient. 
"You can be the best home-care worker in the world, but if you don't have the specific tools you need to deal with a person with Alzheimer's disease you are sunk," she said, "Because they do things that a cancer patient doesn't do, and they try your patience.And in some ways I think they're some of the most difficult people to take care of." 
But, aside from a small stipend that the association pays the workers, even this kind of extensive training offers no financial or career advantages, she said. Home health care agencies hands are tied also, said Bob Callaghan, a spokesman for the <a href="/topics/Long_Island%2C_NY">Long Island</a> chapter of Association of Health Care Providers. 
"We're seeing severe cuts on the federal level with home-care reimbursement, and that's trickling down to the state level and eventually to the county level," said Callaghan. "So there's a lot of lip service being paid to home care, but on the other hand, where are the dollars to fund and support that home care?" 
Malack-Ragona said she wants to get the state Department of Labor involved in reform efforts, to raise compensation for workers. On Long Island, most home health care workers' earnings are mandated by the living wage, which in <a href="/topics/Suffolk_County%2C_NY">Suffolk</a> County is $10.69 an hour with health benefits and $12.17 an hour without health benefits. In <a href="/topics/Nassau_County%2C_NY">Nassau</a> County it is $11.50 an hour with benefits and $13.10 an hour without benefits. 
Recently too, Callaghan said, the part of the workers' rate that was a trend factor - similar to a cost of living index - was eliminated because of budget cuts and a revenue tax as well as an <a href="/topics/MTA">MTA</a> tax on employerswas added. 
"The unfunded mandates keep coming along, but the reimbursement doesn't follow along which is what creates this squeeze," he said. 
Adding to the financial strain, Birkmire said, is a reimbursement lag. When an agency submits a list of expenses, they are not reimbursed until two years later. 
"There is no question in our mind that these aides do a tremendous amount of hard work and we'd like to recognize that, but we're limited because of the reimbursement issues that are attached to the industry," said Birkmire. 
There are also retention issues, and the job is one that can create burnout. Hendley spends part of her training talking to the workers about stress and self-care. "These guys don't have support groups, there's no place for them to vent their feelings," she said. 
Workers are in the trenches, she said, isolated in homes for long stretches performing emotionally and physically draining tasks. 
"They work in peoples' homes, and sometimes people will say 'Do my dishes and clean the cat box and also take care of my mom with dementia,' " Hendley said. "And a lot of the time, they're willing to do that, they're very giving folks." 
She said workers can call the association's 24 hour helpline for assistance. 
Teepa Snow, a dementia-care trainer recognized around the country for her innovative approaches to dealing with dementia patients said professional caregivers need to learn new methods of caregiving to face the influx of patients expected in the coming years. 
"We need people who develop skills, who become experts, who are excellent at this and know how to share it," she said. "We need longevity." 
The Alzheimer's Association's 24=hour hotline is 800-272-3900 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q="> Click here to search our resource guide for Alzheimer's groups, topics and Web sites</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-alzheimer-s-a-z-1.1488801"> Click here for Alzheimer's A-Z: Answers to all your questions</a>

ENWORKERS

Home care for dementia -- a system with problems

The Numbers 
&nbsp; 
&nbsp; 
An estimated 33 million people worldwide have Alzheimer's disease. Of these, an estimated 5.3 million are in the <a href="/topics/United_States">United States</a>, 330,000 in New York State, and 55,000 on Long Island. Between 5 and 10 percent of these cases are early or young-onset Alzheimer's. These numbers are only the diagnosed cases. 
In the <a href="/topics/United_States">United States</a>, someone is diagnosed with Alzheimer's every 70 seconds. By 2050, there will be an estimated 11 million to 16 million people in the <a href="/topics/United_States">United States</a> suffering from the disease. Alzheimer's is the sixth leading cause of death in the <a href="/topics/United_States">United States</a> and costs the country an estimated $148 billion each year in medical expenses. 
Nationwide, there are 9.9 million unpaid caregivers taking care of Alzheimer's patients. In 2008, these caregivers provided 8.5 billion hours of care valued at $94 billion a year. According to a 2002 study, it costs businesses $36.5 billion in indirect costs for employees taking care of a person with dementia. 
As many as 1.4 million of these caregivers are considered "long-distance" caregivers, living an hour or more away from the patient. 
In 2008, the average cost of home medical care was $144 for an eight-hour day. The average cost of adult day services was $64 a day. The average cost of an assisted living facility was $36,372 a year. The average cost of a nursing facility was between $69,715 to $77,380 a year. 
According to a 2004 study, the average per-person payment that year for health care and long-term-care services for Medicare beneficiaries with Alzheimer's or dementia is $33,007 - three times that of a person without dementia. 
As of 2005, Medicare costs for beneficiaries with dementia was $91 billion. It cost $21 billion in 2005 in state and federal Medicaid costs for nursing home care for those with dementia. 
From a 2009 report of The Alzheimer's Association, 
headquartered in Chicago.

ENFACTS11

On LI, 55,000 reported Alzheimer's patients

For nearly two years, reporter Denise M. Bonilla and photographer J. Conrad Williams Jr. followed six families in order to chronicle the agony of Alzheimer’s disease and to provide an inside look at the role of the caregiver. 
The families all have different circumstances and loved ones at different stages of the disease. 
On many occasions, Bonilla and Williams arrived at the families’ homes early in the morning, often leaving late at night, as they observed the hour-to-hour, day-to-day struggles of caring for someone with a disease so debilitating it robs its victims of any knowledge of a life once happily lived. 
The stories Bonilla wrote and Williams photographed are as much love stories as they are stories of hardship and struggle. 
&nbsp; 
<hr>
 
&nbsp; 
The online project 
Lead Editor: Jamshid Mousavinezhad 
Lead Developer: David Holland 
Creative Manager: Michael Aguggia 
Lead Designer: Matthew Cassella 
Designers: Ray Shahriar, Matthew Hogeboom 
Copy Editors: Martha Guevara, Rosemary Olander, Liisa May 
Interactive producers: Adam Abramson, Amy Larson 
Photo Editor: Jeff Schamberry 
Multimedia Editor: Arnold Miller 
Video editors and researcher: Brendan Awerbuch, Daryl Thomen, Susan Elder 
Newsday.com Editor: Emilio Guerra 
Associate Managing Editor: Jonathan McCarthy 
Data input: Kathy Diamond, Dorothy Levin, <a href="/topics/David_Cassidy">David Cassidy</a>, Laura Mann, Iris Quigley, Judy Weinberg, Ann Smukler, Mary Beth Foley 
Graphics and Science: Rod Eyer, Delthia Ricks 
Interns: Bobby Bonett, Anastasia Economides 
Email us at <a href="mailto:alzheimers@newsday.com">alzheimers@newsday.com</a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">&gt;&gt;MULTIMEDIA: Click here to see videos, interactive graphics, more stories of Alzheimer's patients and caregivers, timelines and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q=">&gt;&gt;RESOURCES: Click here to search our guide for Alzheimer's groups, topics and Web sites</a> 
<a href="mailto:alzheimers@newsday.com">&gt;&gt;EMAIL: Give us your feedback at alzheimers@newsday.com</a> 
&nbsp;

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Alzheimer’s on Long Island: About this project

Alzheimer's on Long Island: The Henleys

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