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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

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 decision to place a loved one with Alzheimer's into an assisted living or nursing facility can be a grueling - not to mention financially difficult - decision. In most cases, experts said, family members hold off for as long as possible, waiting until situations reach a crisis point. 
"They feel like failures that they have to resort to a residential placement," said Barbara Vogel program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Geriatric Center in Glen Oaks. "It's done with a huge amount of guilt. It's never done with any kind of joy. It's only done because they absolutely are at the end of their rope."
Paula Rice, 56, of <a href="/topics/Manhattan">Manhattan</a>, said she felt tremendous guilt when she placed her mother Mabel in a facility after several years of trying to care for her at home by herself. 
"I felt like I was letting her down, I should take care of her myself," Rice said. "She took care of me and I'm not a good daughter, all of those things. You feel like you're inadequate in some way."
According to a 2006 survey conducted by the American Health Care Association, a national long-term care trade group, there are more than 3 million people age 65 and over living in assisted living and nursing home facilities in the <a href="/topics/United_States">United States</a>.
The costs of assisted living and nursing home care over the long-term can wipe out a family's savings. 
Most assisted livings - which the Alzheimer's Association said cost a national average of $36,372 a year in 2008 - do not accept Medicaid and have strict requirements for a resident's mobility and medical needs. Nursing homes - which experts estimate to cost between $120,000 to $160,000 a year on <a href="/topics/Long_Island%2C_NY">Long Island</a> - require either private pay or spending down to qualify for Medicaid. 
But for those who place their loved ones in facilities, the benefits to both resident and caregiver can be enormous, experts said. 
As her mother Helen's Alzheimer's progressed, Kim Latkovich, 38, <a href="/topics/Manorville%2C_NY">Manorville</a> tried to help her father, Orlando, care for her, while also caring for her own two young children. She became frustrated and then saw her father's health deteriorating from the strain of caregiving. Earlier this year, she and her father made the decision to place Helen in a nursing home. 
"I couldn't do anything with her besides just come here and take care of those basic needs and feed her," Latkovich said. "I knew that she needed to have interaction . . . I knew that she'd get physical therapy or even just people talking to her and now I'm happy that I can visit her and talk with her and hang out with her . . . I can enjoy being there with her and she can enjoy being with me and I'm not stressed about it." 
Her father, Orlando Gonzalez, is also less stressed, she said. He visits his wife five times a week and plays songs in Spanish that she can still remember from her youth. 
"The nursing home is great, she walks all over the place and it's a good nursing home," Gonzalez said. "Some nursing homes they keep them locked in and they can't do anything. Here, they let them walk and she loves to walk and she feels like she's doing something."
Karen Headley, 52, of <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>, placed her mother in an assisted living facility several years ago. While at first she felt guilt, she said the experience has been good for both women, who had been locked in a mother-daughter struggle during the caregiver process. 
"Our relationship is a lot less tense now because I'm not in a position to keep pushing things on her that she doesn't want," Headley said. "This way, she's in fairly great spirits. . . If I was taking care of her, I'd be more stressed out and I couldn't just come here and have a pleasant visit . . . And they're able to get things done that I wasn't able to get done so that helps with the guilt."
But Headley acknowledges that some guilt lingers because her mother took care of her and was herself a caregiver to her father and grandmother. "But I'm a different generation," she said. "She never worked full-time and I'm not her. Maybe she was more cut out to be a hands-on caregiver than I am."
The guilt from placing a loved one in a facility often lasts for years afterward, experts said, and as the person's condition worsens, the visits become less frequent. 
"I think families finally come to accept that it's a necessity but visiting their loved one in a nursing home is unpleasant," Vogel said. "They go because they have to, they leave as quickly as they can, they go as infrequently as they can." 
In the months after placing her mother in a nursing home, Rice had a similar experience. 
"There was a point when I couldn't even go to the nursing home," Rice said. "I would say 'OK, you've got to visit your mom today' and I would just procrastinate the whole day. I just couldn't go. It got the point where I had to talk to a therapist about it because once two months went by. I couldn't even walk anywhere near the place."
From going to therapy, Rice learned that she was suffering from anticipatory grief, a reaction of grief over an impending loss that mimics the grief process experienced after a death. 
"I didn't want to even look at her anymore," Rice said. "It was just too painful. I didn't want to have to experience any of it anymore. And I would feel guilt about it. Then I started getting anxiety attacks."
Rice found that what helped was having someone come with her to the nursing home, to take some of the pressure off. Afterward, she would go out to coffee with the person to discuss things and alleviate the emotional weight of seeing her mother in the facility. 
But for some caregivers, the anxiety of long-term care facilities stems not from seeing their loved one there, but from the quality of care received. Nursing homes have tried in earnest to move away from the institution-like settings and reputation of neglect that led to widespread reform in recent decades. But with staffing shortages and low-paid and untrained workers, homes are still facing scrutiny, particularly from the loved ones of residents. 
Dorla Walker, 54 of <a href="/topics/Baldwin%2C_NY">Baldwin</a>, who is featured in Newsday's series on Alzheimer's, tried in vain to find a nursing home suitable for her father Thomas but instead found several that she said overmedicated him and did not take proper care of him. Even in those facilities that had specialized dementia units, Walker's father's behavior seemed to only draw the ire of the staff and they would not provide even basic hygiene at times, she said. 
"There's no compassion, they just let them sit there and deteriorate," she said. "They rip up their dignity, their integrity."
Nursing home oversight is shared by both federal and state agencies. After the state conducts a survey of a facility, a federal survey team performs another survey in order to compare the results. 
<a href="/topics/Jeffrey_Hammond">Jeffrey Hammond</a>, spokesman for the <a href="/topics/New_York%2C_NY">New York</a> State <a href="/topics/Department_of_Health">Department of Health</a>, said the state conducts unannounced surveys at all long-term care facilities every 9 to 15 months, and will do additional investigations when complaints are lodged against a facility. The department receives between 9,000 to 9,500 complaints annually, he said. 
Any deficiencies that are found must then be addressed by the facility in a correction plan, which is submitted for review. Most of the time, these plans are accepted by the department, Hammond said, who then go back and make sure problems were corrected. In cases where there are repeated patterns of deficiencies, the department can levy a fine against the facility or place them on the department's "do not refer" list which means the facility is not allowed to take any more residents. Hammond said this is rare, with only three or four in the state. In cases of serious violations, the department can also shut down sites, he said, transferring residents to new facilities. 
The department's surveys are intended to look at "every level of care" Hammond said, including nutrition and whether proper measures are taken to prevent wandering outside. The department does require facilities have annual in-service training, he said, but there is no dementia care requirement. There is also no required staff - to - resident ratio for facilities, he said, and staff levels are evaluated as being sufficient if there is enough staff "to provide an appropriate level of care and meet the needs of residents." 
A 2008 report by the <a href="/topics/Government_Accountability_Office">Government Accountability Office</a> found that "during fiscal years 2002 through 2007, about 15 percent of federal comparative surveys nationwide identified state surveys that failed to cite at least one deficiency at the most serious levels of noncompliance - actual harm and immediate jeopardy." It was 22 percent in New York. 
The report also found that during the same period, "about 70 percent of federal comparative surveys identified state surveys missing at least one deficiency at the potential for more than minimal harm level, and in all but five states the number of state surveys with such missed deficiencies was greater than 40 percent." In New York it was 55.6 percent. 
According to the report, the type of deficiency that was most often missed at the "potential for more than minimal harm level and above," was "poor quality of care, such as ensuring proper nutrition and hydration and preventing pressure sores."
A report that same year from the <a href="/topics/United_States_Department_of_Health_and_Human_Services">U.S. Department of Health and Human Services</a> found that more than 90 percent of the nation's nursing homes were cited for violations of health and safety standards. 
Often cited as a cause of these types of infractions is staffing levels and staff training. Working in this field can often be one of the hardest, most underpaid jobs out there, experts said. The American Health Care Association found turnover rates of 65.6 percent for certified nurse aides in 2007 and turnover rates of 49.9 percent for licensed practical nurses. 
"Typically, our Medicaid funded facilities, and mostly we're talking here Medicaid nursing home beds, are typically understaffed for what they should be," said Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a>. "And, they use lots of medications to try to manage behaviors because they don't know what else to do."
Training in dementia care is rare, experts said, and many aides simply do not know how to handle the behaviors that come with the disease. Snow advises caregivers to continually monitor and advocate for their loved ones. 
"Right now there's no credentialing for dementia caregivers," she said. "There's no standard of what skill set you need to demonstrate in order to be on a [dementia] unit and it's basically as long as you don't get caught doing anything awful, it's wide open." 
Because staff are not trained in the disease and because administrators would rather not deal with the hassle of disruptive behavior, some caregivers speak of their loved ones being "blacklisted" by nursing homes and assisted livings who claim to have no available beds or who discharge residents they consider to be problematic. While some experts said they have never seen an "official" blacklist used by nursing homes, patient reports often give enough information to allow them to be selective, they said.
"If I read . . . that they have episodes of agitation and aggression during personal care activities, I've got plenty of other names on my list," said Snow. "The facilities can be sort of picky about who they bring in because their staff is not well prepared, not well-trained."
Every staff member at Harbor House assisted living is trained in dementia care, said Michele Browner, administrator and director of nursing. That's because the <a href="/topics/Port_Washington%2C_NY">Port Washington</a> facility is entirely dedicated to dementia residents. The only facility of its kind on Long Island, Harbor House separates residents, by floor, according to their level of cognition. 
But, as with other assisted livings, Harbor House must comply with "outdated standards" said former administrator Christine Macchio. Medicaid money often does not go to assisted livings - only three facilities on Long Island are part of a program that sets aside a certain number of beds as Medicaid eligible. And in assisted livings, when residents reach a higher level of care - such as when they become non-ambulatory - the state dictates that they must be discharged, she said, even though the care needed may be custodial care and could be provided at an assisted living. 
"Families are begging for Medicaid dollars and not have their loved ones go to nursing homes and they are forced to go," Macchio said. "If Medicaid is paying $13,000 for a nursing home, they can certainly pay $4,000 or $5,000 for a facility like this."
Browner said Harbor House has been trying since 2005 to receive "special needs" licensure under new state rules, so that it could provide care beyond the boundaries currently dictated, allowing residents to age in place. She said their application has not been executed yet by the state. 
Unlike Harbor House, most nursing homes and assisted livings have only a unit dedicated to dementia residents. Those staff members are not required to be extensively trained in the disease but some do take it upon themselves to get specialized training. 
Doreen Hines, 51, of the <a href="/topics/Bronx%2C_NY">Bronx</a>, has worked at an assisted living facility for 10 years. She acknowledges that at her facility "some workers are rougher than others" with residents and need more patience and training on how to approach those with dementia. "They take away their independence from them, when they can do things," she said. "They say, 'Come on, you're going to take a shower, let's go!' whether they want to or not."
Hines admits it can be frustrating dealing with dementia patients. But after attending a recent professional caregiver course at the New York City chapter of the Alzheimer's Association, she has already started changing her approach with residents and said she has seen positive results. She's trying to teach other staff members as well, she said. 
Hines sought the training because she has grown close to a particular resident, a 50 year-old woman with dementia who does not speak. "She so young," Hines said, overcome with emotion. "She cannot tell you if something is wrong with her, if somebody is mistreating her . . . I'm the one who takes care of her so I'm very attached to her." 
The resident's room is her first stop when she starts her shift, Hines said, and she will go over to hold her hand and hug her. Hines said she hopes to remain at the facility "because I have to pay attention to her. I've got to."
Such attachments are not uncommon, said Terry Devaney of the Long Island Alzheimer's Foundation in Port Washington, especially if staff spend time with visiting loved ones. 
"They begin to care almost like the family members," Devaney said. "They get to know the personal history of this person just by the family involvement. Very often when the person passes away, you'll see nurses and nurses aides go to the wake or the shiva."
Many workers on dementia units are dedicated and spend years there, Devaney said. "There's something in them that makes them feel like this is where they need to be, this is what they should be doing," he said.
But family members said such care and devotion are still rare in facilities. 
"I call them the one percenters," said John Rauh, whose father John lived in a nursing home until his death earlier this year. "They are in this with their hearts, they're not just collecting a paycheck. . . but there's just not enough of them. There's just not enough . . . who are that kind, who are willing to take that extra minute or pay that much more attention to them." 
 
The New York State Department of Health 24 hour nursing home complaint hotline is 1-888-201-4563. 
 
Assisted living care complaints in New York can be made at 1-866-893-6772.
 
Find and compare nursing homes around the country at: http://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteriaNEW.asp?version=default&amp;browser=IE%7C6%7CWin2000&amp;language=English&amp;defaultstatus=0&amp;pagelist=Home&amp;CookiesEnabledStatus=True

ENNURSING

Struggling with putting loved one in assisted living

As the number of people diagnosed with Alzheimer's continues to grow, those in the field are continually trying to come up with new and better ways to serve this community. Instead of using a rigid, institutionalized setting, adult day programs are being created and tweaked to try new methods of reaching people. 
Cold Spring Hills in Woodbury, for instance, next year will start one of Long Island's only adult evening programs. Having already run a successful day program, the new addition, which will take off where the day program ends and last until 8:30 p.m., is intended to address the needs of sundowning patients. Sundowning is when dementia patients become agitated during the late afternoon and evening hours. 
Many adult day programs, such as the Memory Lane Club at the Long Island Alzheimer's Foundation in Port Washington, use art, music or pet therapy. Others use massage or acupuncture. 
"People with the disease continue to be stimulated and enlivened by music and expressions of art right up until the end," said Rosemary Irving, head of African-American outreach for the New York City chapter of the Alzheimer's Association. "And they also continue to be enlivened by expressions of affection and touching and different kinds of ways of relating and I think that can be very enriching for family members as well as keeping the person with the disease engaged." 
The following are three innovative adult day programs in the area: 
&nbsp; 
Broadlawn Manor 
&nbsp; 
In a dimly lit room at the Broadlawn Manor adult day program in Amityville, a sound machine plays the calming notes of ocean waves crashing against the shore. Ten members of the program sit around a table as a diffuser spreads the scent of lavender oil throughout the room. 
Essential oils have long been known to hold healing powers but certified activity director Danielle Maers doesn't give a lecture on the benefits of the oils - this group is far too cognitively impaired to understand. Instead, she walks around and offers to have the participants smell the scents, holding it under their noses and asking if they like her perfume. If they are agreeable, she'll rub the oils on their pulse points, such as their wrists or behind their ears. 
"Clara, smell this perfume that I have," she offers to an elderly woman clutching a baby doll. "It's nice, do you like it? Would you like some on your wrists?" 
The woman quietly answers yes and Maers puts on some latex gloves and puts the oil on the woman. The woman never looks away from the doll but a smile forms on her face. She is calm now but the woman frequently becomes agitated, Maers said, asking to go home and to see her son, who takes care of her. The oils help, Maers said, and at times the results are quite dramatic. 
Wanderers remain in their seats. Angry participants remain calm after a few drops of lavender behind the ears. "It's not 100 percent but most of the time, it's very effective," she said. 
Kathy Behan, director of adult day services at Broadlawn, has been incorporating essential oils into the adult day program for six years. She became a convert after she began using them on her husband, Jim, who had ALS. After using the oils, Jim came off 14 medications and his physical condition improved dramatically, she said. Behan, who is a Type I <a href="/topics/Diabetes">diabetic</a>, even began using the oils herself and has seen her use of insulin drop significantly since she started. 
Behan said the oils are absorbed through the skin in seconds and are throughout the body in 20 minutes. "The best part of it for me is there are no negative side effects," Behan, a registered nurse, said. "I have yet to have a patient have any adverse effects." 
The use of oils for healing purposes goes back thousands of years but it wasn't until the 1930s that scientists began actually testing oils' medicinal qualities. Because essential oils are natural, Behan said, they cannot be patented and there are no clinical trials on them, unlike prescription drugs. But, she said, pharmaceutical companies sometimes use the oils in their drugs, and the oils are used medicinally by physicians in <a href="/topics/Europe">Europe</a>. 
At Broadlawn, Behan said she has seen some "dramatic" changes using the oils. "I have seen some unbelievable effects on people who traditional medicine has given up on," she said. 
She said she has witnessed patients go from using psychotropic drugs to not using any at all. One man was on high doses of <a href="/topics/Hydrocodone">Vicodin</a> but now uses only a blend of oils for pain relief. Another man was suffering from nausea but after a few drops of peppermint oil, he was eating a full breakfast. 
"It's everyday stuff that can make such a difference just to incorporate them," she said of the oils. 
Behan predicts the use of more holistic treatments will increase as the baby boomer generation ages. "The natural industry is growing," Behan said. "Baby boomers don't want medications, they don't want the side effects, they want more natural things." 
&nbsp; 
MemoryWorks 
&nbsp; 
It's a Thursday morning and Paulette Michaud is her usual energetic self as she picks up a marker and begins writing on white poster paper. Her dozen charges, all with some form of cognitive impairment, are still holding onto their coffee cups and noshing on bagels, as they look up at her expectantly. Michaud draws a hot-pink diamond and announces that they will be doing complex sentences, starting with a two-letter word then building to seven letters before bringing it back down to two again to make a complete, coherent sentence. 
At first the group jokes around but they soon settle into a quiet seriousness, some drawing their own diamonds on notepads as they search their brain. Words are shouted out at random, some the wrong number of letters, some inappropriate for the sentence they're building. Other words Michaud herself is unfamiliar with until she looks them up in a dictionary. By the time they near the end of the sentence, the group is stumped. Suddenly, a woman who had not been participating much quietly offers up the last three words of the sentence, drawing a round of applause from the room. 
"You guys aced that!" Michaud says enthusiastically as she moves onto an exercise that will force the group to use a different part of their brain. 
The group is taking part in MemoryWorks, a brain stimulation program for those with mild cognitive impairment (<a href="/topics/MCI">MCI</a>) and early-stage dementia that Michaud started at the New York City chapter of the Alzheimer's Association nearly two years ago. 
"The thing that we do know is that exercising the brain and keeping the blood flowing, you're not going to go wrong," Michaud said. "I'm not going to make all of these claims that we're not certain about in terms of how much good it does. But we do know that it certainly does good." 
Participants said the brain exercises also provide a self-esteem boost. 
"I still have a mind and here I feel like I'm joining, in, I'm competing with my peers," said Carl Eden, 70, of Jackson Heights. "It's kind of a shot in the arm. When you leave here you feel better about yourself." 
Keeping his brain as active as he does his body when he bikes around the city helps keep him motivated, said Jason Marder, 66, of <a href="/topics/Manhattan">Manhattan</a>, which in turn gives him a fresh outlook on life and his disease. 
"It's a camaraderie," Marder said. "We're all in the same situation. We don't think about that situation much but we understand it and because we're all in this together, it gives us the strength to go on." 
Michaud said her inspiration for the group was Alana Rosenstein's early stage group at the Long Island Alzheimer's Foundation in Port Washington. She said in the past, dementia clients were always in their 70s or older. But in recent years, she said, the association has begun seeing patients in their 50s and 60s. 
"Dementia's horrible, I don't care what stage of your life or what age you are," she said. "But I didn't see the fight in those people that I see in my current clients who are all much younger. They do not see themselves as, 'Well, I'm retired, I'm in the golden years and I'm supposed to sit in a chair.' That could not be further from their views of themselves." 
Instead, these dementia patients are trying to fight back, to remain active and work their brains as much as possible. And being among others with cognitive problems helps takes the pressure off, they said. 
"It's OK if we all say something or if we don't say anything," said Myrna King, 79, of <a href="/topics/Manhattan">Manhattan</a>. "To be in this environment and be among our peers, we feel like we're OK as opposed to apologizing to others for not being able to focus or understand or remember." 
Michaud said programs such as this are rare for this bracket of dementia patients and as a result, when their abilities do begin to decline and they are no longer able to keep up in the group, there are few places for them to go. 
"Most people who transition out of MemoryWorks are not at the stage where an adult day care center is for them," Michaud said. "They are still too insightful. Their self-esteem, their view of the world is still far too highly attuned to put them in an adult day center where people are in the moderate stages." 
The group doesn't really get into deep discussion about their declining cognition, Marder said. "We're trying to just push through it and not dwell on it because that doesn't help anything." 
"We have stopped our early stage support group because a number of people who were in MemoryWorks were in the support group and they didn't want to talk any more in group," Michaud said. "They don't want to spend time focusing on the negatives. They know what's coming, they know that they're having a difficult time. They don't want to dwell on it." 
&nbsp; 
Let's Do Lunch 
&nbsp; 
It's a Friday afternoon and in an upstairs area at the Sid Jacobson Jewish Community Center in East Hills, a group of individuals are hard at work putting together a mailing about the center's adult programs. 
Brian Kammerer, 51, of Massapequa Park, is fastidiously stuffing envelopes, almost robotic in performing his task. Always a perfectionist, before he seals the envelopes he checks each one to make sure all of the necessary components are inside. 
Kammerer displayed this same work ethic when he was chief operating officer of a large <a href="/topics/Wall_Street">Wall Street</a> firm a decade ago. That was before he was diagnosed with early onset Alzheimer's at age 42. 
Now Kammerer spends several days a week at the center, taking part in their Let's Do Lunch program, a physical, mental and social stimulation day program for dementia patients under 60 years old. 
The group of about 20 people perform vocational work, play word games, walk the track and take part in music and art therapy. Unlike the other day program at the center, Friendship Circle, which is geared toward older dementia patients, Let's Do Lunch celebrates the interests and energy level of baby boomers. Instead of listening to <a href="/topics/Frank_Sinatra">Frank Sinatra</a> or <a href="/topics/Jimmy_Dorsey">Jimmy Dorsey</a>, this group listens to the Beatles or <a href="/topics/Led_Zeppelin_%28musician%29">Led Zeppelin</a>. Instead of doing simple seat exercises, these participants play basketball, dance and do aerobics. 
"These are people of a different generation," said Connie Wasserman, program director for senior services. "It's so vital to young people who are physically still vital and energetic, you need activities geared toward them." 
Let's Do Lunch meets four days a week from 9 a.m. to 3 p.m. and costs $60 a day. The program was inspired by Mike Henley, of Westbury who was diagnosed with early onset Alzheimer's at age 36. Forced into the role of sole breadwinner after Mike was fired, his wife Karen called up Wasserman three years later in a desperate plea to accept Mike into her adult day program. Mike was home all day, frustrated and depressed over not working, she told Wasserman, but none of the other day programs would take him because of his age. 
"We tried our very best to help them in any way we could but the truth is a 39-year old man does not fit into a program with people in their 70s, and 80s and 90s," Wasserman said. But then she began to receive more calls from those seeking services for early onset patients and she began to put together Let's Do Lunch. 
Wasserman said that since Alzheimer's is often thought of as a disease exclusively for the elderly - five to 10 percent of all cases of Alzheimer's are in those under 65 years old - those who are younger "have sort of been lost." 
"It helps the clients feel like they are still productive and can give back to society," Wasserman said of her program. "With retired people, they chose to retire. With a younger person in their 40s or 50s, they were forced to leave the workforce." 
The success of the program, coupled with an increased need prompted Wasserman to start Let's Do Dinner, a support group for early onset caregivers and Let's Do Pizza, a program for the children of early onset patients. 
The challenge with all of the Let's Do Programs is funding, Wasserman said. Unlike programs for older individuals, which often receive grants through the federal Older Americans Act, programs for early onset clients rely on private donations. 
"We beg and we beg," Wasserman said. "And through the generosity of people we have been able to run the program. We do charge a fee but we also provide financial aid for more than 75 percent of the fees because this is not a population that can afford to pay." 
Early onset families are often under a tremendous financial strain, she said. Many patients are fired from their jobs, ineligible for benefits and depressed over not being able to work or help out at home. Many of these families have young children, she said, and the spouse must continually work to support them. 
"It is a devastating illness at any age but when it affects the younger families it's a tragic illness," Wasserman said. With so few resources available to this group, she said, programs such as hers, which she said is the only one on Long Island, become essential to both patient and caregiver. 
"For spouses being able to work and know their husband or wife is in a safe, stimulating environment - I don't think there's anything money can buy that would give them that peace of mind," she said. 
For the patient, being able to get dressed each day and go out with a sense of purpose can be an enormous boost. 
"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel," Wasserman said. "They leave here with a feeling of something good, a belonging, feeling productive, empowered, respected."

ENUNIQUE

Alzheimer's programs give 'strength to go on'

Newsday profiled six families in its series on Alzheimer's disease and caregiving. Since the series concluded earlier this month, the families say they have been inundated with phone calls and letters from neighbors, long-lost friends and family as well as complete strangers. Many have offered money, meals and other forms of help. 
In addition, Alzheimer's workers from across Long Island have reported a surge in the number of calls and e-mails they have received since the series started running. People are looking for information and guidance, they said. 
Below are some of the responses that the families said most surprised and touched them. 
&nbsp; 
COMMUNITY SUPPORT 
Karen Henley said she has been humbled by all of the offers of money, food and other assistance that have come her way. Among the offers: A neighbor she had never met held a garage sale and gave all of the proceeds to the Henley family, and the residents of Sunrise Senior Living in Plainview are making and selling <a href="/topics/Thanksgiving">Thanksgiving</a> centerpieces as a fundraiser for the family. All of the positive feedback has inspired Karen to take part in the Alzheimer's Association's Public Policy Forum in Washington, D.C., next year to lobby for more funding for Alzheimer's research. "What touches me the most is that almost every person has said how much of an inspiration our family is for them," she said. "It's comforting to know, that even when I am having a really bad day, I can at least know in my heart, that I have given hope to someone else." 
&nbsp; 
OLD FRIENDS REACH OUT 
Harriet Garzero said the series has "unleashed waves of encouragement, support, prayers and comfort" to her and her husband, Edward. The couple has heard from neighbors from 35 years ago, their granddaughter's teacher in <a href="/topics/Vermont">Vermont</a>, a scenic artist who worked with Edward years ago and even the owner of the paint store in <a href="/topics/Manhattan">Manhattan</a> he bought supplies from decades ago. They've also had strangers approach them with questions about the disease, and even gifts: The Consolation Ministry of the Lutheran Church of Our Savior in Port Washington sent a beautiful hand-knit lap robe for Edward and a knit prayer shawl for Harriet, with a note assuring the couple of their prayers. 
&nbsp; 
OFFERS OF ASSISTANCE 
Dorla Walker received an e-mail from a nurse who had read her story and who remembered Dorla's father from a hospital stay. The nurse offered to help in any way she could. People from her church have also offered their assistance as well as words of encouragement. One woman who is related to a home care agency administrator is looking into getting her help at night. "I strongly believe we [caregivers] have brought forth such an awareness to this disease," Dorla said. 
&nbsp; 
THANKS FROM A CAREGIVER 
Lynn Decker was surprised at the number of e-mails she received from total strangers. One of the most touching, she said, was from a woman who works in a nursing home who thanked Lynn for allowing such an intimate look into their lives. "I have always tried to be the compassionate caregiver to both my patients and their families as well as an educator," the woman wrote. "Your piece in a few pages said everything and did everything I have ever hoped to do in my career." 
&nbsp; 
EDUCATING OTHERS 
Gloria <a href="/topics/Richmond">Richmond</a> has been amazed at the number of people who have contacted her to say they didn't realize everything she was going through taking care of her husband. She said many people have commented that, until they read her story, they did not know "all of the things that happen with the person with this disease and how it takes the best of them" and how much stress it is on the caregiver. "I hope they were able to get something out of it, that they know now," she said. "At the beginning, I didn't know anything, I was lost, so I hope this helps someone." 
&nbsp; 
ADMIRATION FOR DEVOTION 
Bob Schreibman said he has been "in shock" over the phone calls and letters he has received. A 16-year-old from Long Island called to tell him how much he admired his devotion and care for Marge all those years. The two spoke for some time and the teen asked if he could call again in the future to check in on him. Not long after, Bob received a call from a woman telling him that she had read parts of Bob's story to her father in <a href="/topics/Florida">Florida</a> and the man realized that he knew Bob from their time in the Army. Bob and the man had not spoken in 63 years but they recently talked on the phone, sharing old memories and vowing to get together in the spring. 
<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 LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">&gt;&gt;PHOTOS, VIDEOS and FLASH: Alzheimers on Long Island, the love and the heartbreak -- Six families opened their doors to Newsday journalists for nearly three years</a>

ENREAC15

Comforting Alzheimer's caregivers

Henley

Probably the most common perception of those with Alzheimer's is that of a confused, feeble person. But for those in the early stages of the disease, this picture could not be further from the truth. Many of these people are active, vibrant members of the community, experts said, saddled by the misperception that they are incapable and somehow "less than" because of Alzheimer's. But as awareness of the disease has grown, they said, so has the resilience of early stage patients to push back against this image. 
"It's in the early stages that they understand that they are in the fight of their lives," said Paulette Michaud, director of early stage services for the NYC chapter of the Alzheimer's Association. "They are so aware of what's going on with them and they know it's only going in one direction. The caregivers know that, too. So, there's that continuous kind of battle with this disease that they're not willing to go quietly." 
<a href="/topics/Richard_Taylor">Richard Taylor</a>, a retired psychologist who has been living with Alzheimer's for eight years, wrote the book "Alzheimer's From the Inside Out" in 2006 and continues to produce a monthly newsletter. Taylor, 65, of Cypress, Tx, travels the country speaking about what it is like to have the disease and is a passionate advocate for the inclusion of Alzheimer's patients into the program development of Alzheimer's groups. Taylor said the common notion that Alzheimer's is a "long goodbye" is false. 
"Every day I wake up and I say 'Hello, I'm me, I'm Richard, I am a whole person," he said. "There's nothing wrong with me . . . I may be different than I was yesterday, I might change in the middle of the day but I am a whole human being. Friends, as soon as they find out about your diagnosis, begin to say goodbye to you. They look at you to see what's gone." 
Even those with the disease may have an inaccurate perception of dementia, experts said, and as a result, hesitate to reveal their condition to others. Alana Rosenstein, director of early stage programs at the Long Island Alzheimer's Foundation in Port Washington, said the topic comes up frequently in support groups. 
"The disease may not be that apparent yet so there may be the issue of 'People aren't noticing what's going on with me do I chose to tell them or do I not chose to tell them? How do I try to cover or do I not try to cover?" she said. 
Inevitably, there is acknowledgment of the stigma of the disease, she said. Experts said this stigma -- present with most conditions associated with mental cognition -- can lead patients to isolate themselves and try to "cover up" for as long as they can pull it off. 
"There is this unspoken belief that it has something to do with a lack of character and that couldn't be farther from the truth," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Geriatric Center in Glen Oaks. "These are real illnesses and they need to be treated like any other illness that would effect any other organ in the body." 
But because Alzheimer's involves cognitive function, experts said, loved ones sometimes forget that the changes occurring in patients are beyond their control, a situation that results in frustration on both ends. 
"You wouldn't say to someone who's <a href="/topics/Diabetes">diabetic</a> 'Just try harder, you can make your pancreas secrete insulin,'" Rosenstein said. "And yet someone might say to someone with Alzheimer's disease 'Oh just think, try harder you can think of it.' It's not the person with Alzheimer's disease's fault that they have these symptoms anymore than it is anyone else with any physical illness." 
Nancy Noel, 66, and her husband Lincoln Werden, 73, of Manhasset have struggled with the changes brought by Noel's Alzheimer's. 
"I feel, like a loss," Noel said. "Like I'm not what I was. And I also feel for my husband that he has to do a lot more than he would have had to do if I was still who I was." 
Werden said he is frustrated with his wife at times, attempting to be sensitive to her condition and yet wanting to continue to function at the same level they have maintained throughout their marriage. 
"It's kind of a weird thing for me because she's still a functionally intelligent woman in many ways yet there's a lot of basic stuff, stuff a kindergartner could handle, that she suddenly is wiped out of now . . . just remembering phone numbers and dates and just to be able to spell even certain basic words is now a problem for her." 
Noel takes comfort in the early stage support group she attends at the Long Island Alzheimer's Foundation, where she is surrounded by those walking in similar shoes. 
"We talk about how we miss what we don't have anymore," she said. "We talk about how much fun we have together and how great it is to be able to talk about it because you can't do that in the real world." 
Also thirsty for the rapport only a fellow patient can provide, Taylor said he loves meeting others who share his disease. 
"You have no idea of the sense of connectedness . . . because we're so alone," he said. "There's a kind of existential loneliness to having Alzheimer's. Because I feel the distance. We are growing apart. I can't always define it, I'm not always aware of it. But I know it's getting deeper and deeper and deeper." 
Noel said her support group members lean on each other but that while the group has serious discussions it also shares laughter over their memory loss. 
"We make jokes about it," she said. "We can do it because it's ours."

ENEARLY

Early stage Alzheimer's patients wage fight of their lives

They fight with the government, they tussle with health insurance companies and they struggle against the medical establishment. Caregivers for Alzheimer's patients deal with many types of confrontations but one of the toughest battles they often face takes place within their own families. 
Complicated, sometimes fractious family histories have a tendency to re-emerge after a medical diagnosis such as dementia, experts said, with long-held resentments, anger and jealousies spilling over into caregiving. Adult children who cannot bear to see their parent transformed, siblings who don't want to be primary caregivers yet who want a say in the kind of care the parent receives and disagreements over how money - and potential inheritances - are spent are just some of the clashes that erupt. 
Ellen Eichelbaum, a Northport gerontologist who often counsels families in conflict, said the strain of caregiving - both money and duties - can break up marriages, cause fractures in otherwise healthy relationships and leave caregivers angry and depressed. Because families so rarely plan ahead, she said, it's only when an emergency arises that these issues emerge. 
"When a crisis comes up, 90 percent of the time at the very beginning siblings say 'I'll be there, don't worry,'" Eichelbaum said. "But then later on, we have family members who live in the same house who don't give care. That's how down and dirty it gets." 
Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a>, said of all diseases, dementia is the one that ultimately tears families apart over time. Snow said the first time the tensions rear up is when getting a diagnosis, with family members disagreeing with the diagnosis or in denial about a loved one's condition. The next time things get strained, Snow said, is when behavioral issues arise, such as wandering or driving and family members disagree over how to handle these problems. And then finally, Snow said, family members butt heads over end of life issues, whether to let go or continue care and in what fashion. 
"Typically we find that either families pull it together and get their act together and deliver the care well or there's this continuing struggle," Snow said. 
Long-standing, assigned family roles take on a new dimension with caregiving, Snow said, and can hinder the process. For instance, she said, a man who has dementia may want his son to handle all money matters and his daughter to provide the caregiving because those are the gender roles he became accustomed to during his life, even if they aren't accurate. 
"We may have a son who is a poor money manager," Snow said. "Now he's in charge of dad's money. Well, he doesn't really want to spend the money on dad's care, he wants to hold on to it just in case for inheritance. Well, the daughter is wearing out . . . she would much rather hire somebody, but he controls the money." 
John Rauh, 41, of Yaphank, found himself at odds with family members when he took in his parents, who were both diagnosed with Alzheimer's. Even though he was serving as primary caregiver, questions began arising about the decisions he was making and the money he was spending on their care. 
"One thing you learn when you go through something like this, your family and friends around you, they're either going to rise and help you and protect you or they're going to fail you spectacularly," Rauh said. "Mine failed me, huge. I have family that I'm not even speaking to at this point. " 
Rauh said his "soul hurts" after a year of caring for his father John, 84, who passed away in January. 
"You have the people that tell you or tell other people in your family what should be done, how you should be handling it," Rauh said. "Yeah, you get it all. What you don't get a lot of is, 'I know you're doing everything you can.'" 
Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Hospital in Glen Oaks, said that she can understand the difficulty adult children have in facing dementia and providing care. 
"This disease is very frightening for many people," Vogel said. "Watching your parent revert back to a child is not an easy thing to watch and the kind of care they require - not everyone has the strength to provide that." 
Because of this, she said, she has seen the tensions that rise, particularly among siblings. "I've dealt with families that had 10 and 12 siblings," Vogel said. "One is providing care and the rest of them just can't deal with it. And the one who's providing the care is angry and needs the support." 
Even stickier is when the healthy parent begins dating while the spouse with dementia is in a nursing home or assisted living facility. 
"When the healthy parent chooses to 'move on' and create a new life for themselves, adult children feel torn between maintaining old relationships - 'for better or worse' - and recognizing that their well parent has normal needs and desires for companionship and love," Vogel said. 
Pat Moffett, 62, of Great Neck, said tensions first arose with his children when the time came to admit his wife Carmen, 66, to a nursing facility in 2003. Even after doctors explained to them that their mother could not be safe at home, "I still became the bad guy who threw mom away," Moffett said. 
Adding to the rift was Moffett's later desire to begin dating again. "You really have to move on with your life," he said, echoing his therapist's advice to him at the time to help with his depression. But while three of his children have been accepting, for the two already upset with his decision to place their mother in a nursing home, it is a betrayal. 
"And we haven't spoken in years," Moffett said. "So it just breaks up families like that." 
Dating while still married to an Alzheimer's patient is an issue that comes up frequently, Vogel said. "I have spoken with many spouses over the years and have given them 'permission' to go on with their lives, especially the spouses of young onset patients," she said. Vogel said she tries to diffuse the anger of the children by telling them that the decision to move on is "a tribute to the relationship that their parents had when all was well." 
For caregivers who feel resentment toward family members perceived as not pulling their weight, silence can be the greatest enemy, Vogel said. When caregivers feel overwhelmed they need to make sure to delegate duties, she said, and seek specific help. "The one thing I always advise them to do is to ask," Vogel said. "If you don't ask you won't get. Be very specific with family members, what kind of assistance you need. Ask somebody to take over the financial piece. Ask somebody else to do the medication piece, make the doctors appointments." 
The advice that Eichelbaum gives to families who have not yet reached a crisis point, is to begin talking about the future and planning care. "Have the siblings talk about 'what do we do if mom gets sick,'" she said. "That way, when something happens, you won't be in such a mess."

ENFAMILY

Family relationships take hit after diagnosis

liALZjcw

When Charles Tang's wife Amy, 76, was diagnosed with Alzheimer's several years ago, he started looking for a support group for himself. He was shocked to find that of the more than 300 Alzheimer's support groups in the metropolitan area, none were available in his native Chinese language. 
"Every time I was attending the education meetings at the Alzheimer's Association, NYC chapter, I found that I was the only one who was Chinese or even Asian," said Tang, 84, of <a href="/topics/Manhattan">Manhattan</a>. 
It wasn't until several months ago that Fai Lin Lau, working with the NYC chapter of the Alzheimer's Association, was able to drum up enough interest to start a support group for Asian caregivers. Lau said her biggest obstacle has been trying to educate those in the Asian community that Alzheimer's is a disease of the brain. 
"The first misconception is they think this is a mental illness," Lau said. "The second is they think this is a normal part of aging and the third is they think this is from something they have done wrong in their past life." 
As difficult as it is to educate the public about Alzheimer's, experts said it's even harder when outreach efforts collide with cultural roadblocks. Hispanics, African-Americans and Asians are still widely underrepresented in support groups, adult day programs and nursing homes, experts said. 
The reason often begins with minority communities' perception of the disease. A 2007 survey done for the Alzheimer's Foundation of America found that African-American and Hispanic caregivers possess many misconceptions about Alzheimer's. The survey found that 70 percent of African-Americans and 67 percent of Hispanic caregivers were likely to attribute the symptoms of Alzheimer's disease to old age, compared to just 53 percent of respondents in other groups surveyed. 
The poll also found that 67 percent of African-American and 63 percent of Hispanic caregivers said they did not know enough about Alzheimer's to recognize the symptoms, compared to 49 percent of caregivers of other groups. 
Lau said the same is true in Asian communities. "We have to change their perception and say that this is a disease like <a href="/topics/High_Blood_Pressure">hypertension</a> or <a href="/topics/Diabetes">diabetes</a>," she said. 
Even when minority groups recognize there is a problem, there is often resistance to reach out for help, experts said. 
"Some of it has to do with the 'I can do it' pride point of view and some of it has to do with 'How can I know to trust the information that I am going to get?'" said Rosemary Irving, head of African-American outreach for the NYC chapter of the Alzheimer's Association. "And some of it has to do with a level of empathy that traditional methods are valuable within the family and so I think there's an allowance for it." 
Immigrant groups in particular tend to be very insular, Irving said, and it takes several generations before a group will move into the mainstream in this country. They tend to address situations as they did in their previous country and it takes some time to get the message across to them that there's a different way to deal with these issues. 
For many minority groups, the family unit is relied upon for all issues, including medical care, and it is unheard of to reach outside of the family for assistance. 
"It's part of our cultural ideology that we're going to be caring for one another within the nuclear family," said Licet Valois-Gonzalez, head of Latino outreach for the NYC chapter of the Alzheimer's Association. "So we're not just going to be running out asking other people to help us, when we're supposed to be taking care of our family." 
More immediate, tangible medical issues that plague African-Americans and Hispanics at higher rates than other groups can also take priority over Alzheimer's, which can take years to fully manifest. 
"We've got <a href="/topics/High_Blood_Pressure">hypertension</a>, we have <a href="/topics/Diabetes">diabetes</a>, we have obesity," Irving said. "Those diseases are the diseases that put people at risk. . . . And they are the ones that get the attention first." 
But outreach workers said there is also a larger problem of stigma. For many communities, the words Alzheimer's and dementia are associated with being mentally ill. 
Lau said that when she first began her outreach efforts, she had to beg senior centers and organizations to allow her to speak because the subject was considered taboo. "If I announced the talk was about dementia or Alzheimer's, they would not come," she said. 
Paula Rice, a former caregiver to her mother who now gives speeches on Alzheimer's in the African-American community, said that the stigma over mental illness is only part of the equation for African- Americans. 
"I think it's compounded because there's a stigma with being African-American period, of overcoming the stereotype of being second class, of not being smart enough, attractive enough or whatever. " Rice said. "So you've got two stigmas that you're dealing with . . . and you really don't need to be trying to overcome two things so one of them we're going to ignore and that's the dementia. So I think the denial is even greater in the African-American community and that's really a shame because it makes that early diagnosis even more problematic." 
Getting past this denial becomes even more crucial because, while research on ethnic populations and Alzheimer's remains limited, indications are that groups such as Hispanics and African-Americans are at higher risk for the disease. Researchers believe this may be due to these groups living longer and also being predisposed to vascular disease risk factors, such as diabetes. 
This past summer, Rep. Linda Sanchez (D-Calif.) introduced the La Cura Act of 2009, public health legislation that asks for an emphasis on education and outreach in Hispanic populations. Many adult day centers and nursing homes around the country are also making efforts to support the various ethnicities in their communities. 
The Gurwin Jewish Nursing and Rehabilitation Center in Commack has implemented a Spanish-language section of their adult day program. Director Joyce Flynn said it's the fastest growing component of their program in the past seven years. Out of 220 participants, about 70 to 80 speak Spanish, along with several staff members, and activities are often tied into Hispanic culture. 
Hispanic coordinator Maria Rodriguez said she usually meets resistance when she first brings up the subject to patients. "They think I'm going to put them in an institution," Rodriguez said. "I have to literally sweet talk them to make them understand but when they come in the first day, they're hooked." 
At the NYC chapter of the Alzheimer's Association, Valois-Gonzalez has started a Spanish-language newsletter, along with support groups. Because of its efforts - and the rarity of information on Alzheimer's being available in Spanish - the organization's helpline gets calls from around the country, as well as other countries. Often the calls are from family members worried about loved ones having the disease and receiving services. 
Valois-Gonzalez said making information available in Spanish is one step but there must also be an increased awareness of the differences within the Latino community. 
"People have to make the efforts because as time goes by and we see that the Latino community is the largest minority . . . to deal with the Latino community is not only about being bilingual, it's not only the language, it's the culture," Valois-Gonzalez said. "We all come from different countries and we all have our own characteristics that make us different. Within each different culture, we might have different methods to cope with Alzheimer's." 
Meanwhile Lau is hoping to start groups in Brooklyn and Queens and Irving is stepping up her visits to senior centers and churches around the city. 
"I see more inquiry, more willingness to talk about it," Irving said. "But it's still a drop in the bucket."

ENCULTURE

Culture, language pose challenge in dealing with disease

The only way to get a one-hundred percent accurate Alzheimer's diagnosis is an autopsy. But, experts said, using various diagnostic tests, an accurate assessment can be made 95 percent of the time. The problem, according to experts, is that the majority of those with Alzheimer's are already years into the disease process by the time they receive a diagnosis. 
There are several factors in this delayed diagnosis. One is that symptoms of the disease can be difficult to recognize and many attribute them to the normal signs of aging. Another is that even when symptoms are recognized, there exists a large amount of denial on the part of both the individual and their family members. Finally, experts said, even if the symptoms are recognized and acknowledged, many primary care physicians are largely untrained in the disease and may not check cognitive function or direct patients toward further testing. 
"This is a very slow, insidious kind of illness, it starts off in a very subtle kind of way," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Hospital in Glen Oaks. "I think when somebody's in the earlier stages of the illness, they have some awareness that they're not operating quite as they used to, but they're not ready to admit that something is really going on and they're holding on with both fists trying to control their lives rather than admitting that they're having some difficulty and looking for some assistance." 
Because those in the early stages can "cover up" so well, it often takes family members some time to catch on to the changes brought by the disease. But denial plays a part as well, said Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a>. 
"There's still that, 'So what am I supposed to do?' They're looking for the magic silver bullet," Snow said. "They're looking for that, 'How can I make this go away? How can I make this better? Is there no cure?' And that's a really hard thing. They come often still wanting to know, maybe mom doesn't have it. Maybe this is just real bad forgetfulness." 
But often, getting a formal diagnosis can be a tremendous relief, said Darlene Jyringi, program director of the Alzheimer's Disease Assistance Center of Long Island in Stony Brook. 
"They think, 'I'm going crazy, something is wrong, I'm going crazy, I'm losing my mind," she said. The minute that the person is told that they have an illness that is causing the symptoms, it sort of takes that fear out of what's happening. 'Oh, there's a reason why it's happening, I'm not going crazy, I'm not losing my mind." 
Still, some family members try to protect their loved ones from the news, which is a mistake, Jyringi said. 
"Some family caregivers think, 'Well, if the person knows they have this disease they might give up hope," she said. "I think it's important if the person is able, especially for long-term planning. If the person is still in the early stage, they can have a say into what's going to happen to them down the road." 
Even some doctors are hesitant to make the diagnosis, experts said. 
"It has been said that because there is no cure physicians don't want to go to the trouble of coming up with a diagnosis and leave with the families with this new label," said Dr. Gisele Wolf-Klein, director of geriatric education for the North Shore LIJ health system. "But we don't have cures for a lot of diseases that we deal with.. . . I think in many ways it is incumbent upon the physician to come up with a diagnosis that will explain some of the patient's symptoms." 
Wolf-Klein said it's also important to get an early diagnosis so that the patient can be started on drug therapies that can slow down the progress of the disease. 
"What I tell my families is if I can slow down the progress so that mom is not that much worse a year from now than she is today, would that be all right for you?" Wolf-Klein said. "And of course families are delighted with that." 
But many physicians are untrained in diagnosing Alzheimer's or even in the nature of the disease itself, Wolf-Klein said. 
"The medical schools are so overwhelmed by the demands of the curriculum that geriatrics is often relegated to the back burner," Wolf-Klein said. "They could go through four years of training without ever having had a lecture on Alzheimer's disease. So when they move on to their residency problem, they just have absolutely no insight as to how to proceed with a diagnostic work up and the management of a patient with dementia." 
Even the methods which doctors use are limited, experts said. Many begin their assessment of cognitive skills with a 30-point test known as the Mini-Mental State Examination (MMSE). The questions include asking the patient the date, to count backward from 100 by sevens and to copy a drawing of two interlocking pentagons. 
Although this test has become the de-facto standard first-step in diagnosis, it can be inaccurate, said Jennifer Manly, associate professor of Neuropsychology in Neurology at the G.H. Sergievsky Center and the Taub Institute for Research on Alzheimer's Disease and the Aging Brain at Columbia University. 
"The problem with it is . . . people who are culturally different don't do well on it and it has nothing to do with whether they are demented or not. People who have lower education - nothing to do with whether they are demented or not," Manly said. "People who are culturally in the dominant culture, people who are well-educated, they all do well on that test, even if they have dementia. As a screening measure it's not very sensitive but it is very specific in the people who it's meant to be administered to - well-educated, white, older people." 
Doctors and patients alike need to have an understanding that this test is not intended to be a complete diagnostic tool but simply a screening measure, Manly said. "The standard of care is a full neuropsychological test battery and that really is the best thing to do if you have worries about your memory," Manly said. 
Tests such as the MMSE can be useful to begin that initial dialogue about dementia, experts said, and it's one of the tools used in the Alzheimer's Foundation of America's National Memory Screening Day. During this event - which takes place on Nov. 17 this year - various sites around the country offer free, confidential memory screenings to those concerned about memory loss. 
"If we start this process earlier, it makes the whole course of the illness easier," Vogel said. "If they're not so confused and they're not so threatened and they start to accept and find the right caregiver or we find the right program, the rest of this journey is far simpler." 
&nbsp; 
To find a site for National Memory Screening Day: http://www.afascreenings.org/

ENDIAGNOSIS

Screening for Alzheimer's can be complex process

Troubling Behaviors 
Intro 
When Ellen Smith's husband Irwin, affectionately called "Smitty," was diagnosed with Alzheimer's nine years ago, she knew there would be changes coming. But nothing she had learned about dementia prepared her for the behavior she began to witness. 
First came the agitation and aggression. Her beautiful home in Holbrook became a disaster: drawers pulled from dressers, stereos and televisions thrown down, blinds torn from windows. Smitty would often stare into mirrors and threaten his reflection before ripping the mirror off the walls. Ellen could no longer take her husband out. Sometimes he would have hallucinations that people were trying to kill him. Other times he would refuse to get back in the car with her and she'd have to chase him around a parking lot. Neighbors often called the police. 
Then came the violence, directed almost solely at Ellen. 
She had watched him run outside and was concerned for his safety. But when she went to the door, she saw him turn around and flash a malicious grin. "I'm going to kill you," Smitty bellowed at her, charging at her as she quickly retreated into the house. Her husband pounded relentlessly on the door of the Holbrook house they had shared for 36 years. "I knew if he got in, he would do it, he would kill me," she said. She called her son who came over and calmed his father down. 
But there have been other times when she has not been able to escape unscathed. Her husband of 49 years has punched her, slammed her against the wall and pulled out clumps of her hair, all while threatening to kill her. She began sleeping in another room and for a time, her son and daughter took turns sleeping at the house in order to keep their mother safe. A gentle man who had never raised a hand to his wife, Smitty was now unpredictable: no one knew when he might have an outburst or how far he would take it. 
"How someone you've been with so many years can have the ability to do this," she said. "I said, 'This is not Smitty anymore. This is someone else in his body.'" 
For Smith, who's in her mid-60s, the fear of living with a violent husband has subsided. Doctors were finally able to get the correct medications and dosage to control his aggression and he is much more calm, she said. Once in a while, the old Smitty, 71, will pop out. He'll come over to Ellen and give her a big kiss and a hug. Then the next day he pushes her away. 
"To know this is someone you spent your whole life with and they've done such wonderful things, you're so saddened by it," she said. "Because you know who the person was and you don't know who this new person is." 
The behavioral changes that come with Alzheimer's and related dementias can be startling and frustrating for caregivers. In some cases, the behavior can also be dangerous. The following offers information and resources on some of the more common changes experienced by those with dementia. 
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ENBEHAVIORINTRO

Alzheimer's: 'You don't know who this person is'

Alzheimer Decker 14

Sexual Acting Out 
One behavior that Alzheimer's patients may exhibit, and which is very common in those with Frontotemporal Lobe dementia, is a lack of inhibition. This can manifest verbally - calling someone inappropriate names in public - or physically. 
Certain parts of a dementia patient's body become more sensitive, said Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a> who travels the country giving presentations about the disease. One "hot spot" is the mouth and they may begin humming or grinding their teeth. They also may resist a caregiver trying to shave them or touch their mouth. Genitalia also become more sensitive and patients may wince at being cleaned. Those with Alzheimer's tend to savor their sense of touch, leading to clapping, grabbing and even pushing. 
This heightened sense of touch can also lead to one of the least-discussed Alzheimer's behaviors: sexual acting out. This is made worse by older patients with macular degeneration. 
"You're looking at somebody who's gonna be using their hands a lot to explore the environment because they lack their central field of vision and they have no sense of what's the language processing that's going on so they're going [to] be touching and feeling," Snow said. "They're also going to do a lot more self-stimulation . . . . because they can't pay attention to the environment for stimulation so they're going to be focusing on their own bodies. And they aren't going to know where they are." 
This can lead to stripping and masturbation in public, as well as inappropriate touching. Sometimes, the object of affection may be a stranger or even a son or daughter caregiver. "They can't figure out who you are to them; they think they're younger than they are and they don't realize you're the daughter, they think you're the spouse," Snow said. "So they're treating you like that because you're giving care like that and you don't realize that's the role you've taken over." 
A heterosexual patient may even initiate a same-sex relationship. "Does it mean I've developed homosexual tendencies? No," Snow said. "What it means is I have my sensory needs and I want to be close to somebody. I'm lonely, I'm lost, I don't know where I am, I don't know why I am and I'm looking for comfort. . . it's being human and having this disease." 
Sexual acting out can trigger some of the more visceral responses from caregivers, Snow said, and as with all Alzheimer's behaviors, reaction is everything. 
"It is incredibly tough because this has all kinds of emotional registers that it hits with us and it makes us uncomfortable, it makes us nervous," she said. "We get angry, we get upset, we get vindictive, we get mean, we get vicious. We just overreact because it scares us." 
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ENBEHAVIORSEX

Acting out sexually may accompany Alzheimer's

For those attempting to keep their loved one at home, adult day care can be a saving grace, providing patients with social stimulation and allowing caregivers needed respite and time to perform errands they may not be able to get done with their loved one around. 
"Just that part of getting up, getting out, keeping the normalcy in your routine can be very, very therapeutic for the individual and essential for the caregiver," said Elizabeth Geary, director of Day Haven Adult Day Services in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>. 
Most adult day centers operate several days a week for up to 12 hours a day. They have trained staff supervision and often provide meals, outings and personal care services. Some also provide transportation. Fees vary, but according to the Alzheimer's Association, the average cost is $64 a day. 
Some day care centers are intended for the public but many are becoming more dementia-specific, experts said. Adult day services are divided into medical and social model. Medical model services, in which medical services are provided and participants must have a diagnosed medical need (a diagnosis of Alzheimer's does not qualify) are largely funded by Medicaid. Social model services, in which no medical attention is given, typically rely on a combination of local government and private funds. 
Geary said the key to successful dementia-specific day programming is to have small groups and make activities simplified while also adult in nature. "It's supporting their sense of themselves in the midst of their struggle to hold on to as much functional capacity as they can and as much normalcy as they can," she said. 
The cognitive and social stimulation that day care provides can often delay admission to assisted living facilities and nursing homes, experts said. Similarly, there are mental and physical benefits for the caregiver. "We have caregivers who end up with medical complications far in advance of the moment when they place their loved one in a nursing home," Geary said. "And that's because the physical strain on them was too much for too long and they had a heart attack or they had a stroke." 
But social model programs such as Geary's often teeter from year to year on local budgets and private donations or grants. Many are forced to limit or reduce their hours or days so that those seeking five or six-day a week services must go to multiple day care centers. A state Office for the Aging grant helps pay for the dementia-specific programming at Day Haven, as well as case management services. But the grant was cut from the state budget this year so now the center is trying to find alternative funding to continue the programming. 
Broadlawn Manor's adult day services in <a href="/topics/Amityville%2C_NY">Amityville</a> housed both medical and social model day programs until this past April when director Kathy Behan was forced to close the social model portion. The closing of the program, which had been in operation since 1997, left 54 participants with nowhere to go. Six managed to get a medical diagnosis to qualify them for Behan's medical model service but that program is now filled to capacity and, like many day care programs across <a href="/topics/Long_Island%2C_NY">Long Island</a>, has a waiting list. 
"There's no funding for social day care," Behan said. "There's no way you can support the kind of program that we ran. It's too costly and you can't put that on the backs of patients." 
Fred Jenny, executive director of 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> said adult day care is an underutilized "hidden treasure" service. "A lot of times folks know that their relative might be forgetful, that they might have a tendency to wander . . . they might not eat properly and that they might be isolated and lonely," Jenny said. "But if you were going to try and look for the service to take care of all that in the Yellow Pages, what would you look under?" 
Rosalie Silver, 54, of <a href="/topics/Port_Washington%2C_NY">Port Washington</a> wants to keep her mother, Bella Temer, 81, at home for as long as possible and she credits the <a href="/topics/Long_Island%2C_NY">Long Island</a> Alzheimer's Foundation's day services as being a crucial part. Bella attends the Foundation's Memory Lane Club program which is designed for those in the mid to moderate stages of the disease. 
"For me, it's a godsend," Silver said. "I don't know what I'd do without them." 
In addition to allowing her to get work done from her at-home travel business, Silver said she enjoys witnessing the effects the club has on her mother, giving her cognitive stimulation and "that little spunk" that lights her up. 
"Sometimes I go there and she's laughing or singing," she said. "It's nice to see." 
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ENDAY

Adult day care can also offer relief for caregiver

Alzheimer Henley

Experts point to the following programs as helpful in locating dementia patients who wander: Safe Return In the Alzheimer’s Association’s Safe Return program, individuals are registered with an ID number and given a bracelet or necklace identifying them as having a cognitive impairment. When they go missing, their family can call a hotline number and the organization immediately disseminates the missing person’s photo and biographical information to local police, fire and media. Those who find a person wandering can call the toll-free 24-hour emergency response number on the bracelet and the individual’s family or caregivers are contacted. 
The enrollment kit for Safe Return costs $49.95 plus a $25 annual renewal fee. The kit includes among other things, a MedicAlert Identification bracelet or pendant and a Personal Health Record Summary as well as safety tips. The Alzheimer’s Association’s Mary Ann Malack-Ragona said she gets Safe Return calls for missing family members at least once a week. 
 But the bracelets can be problematic for those with some awareness and recognition of the stigma that still surrounds the disease, said Det. Lt. Joseph Williams, commanding officer of the <a href="/topics/Suffolk_County%2C_NY">Suffolk</a> Police Fugitive and Missing Persons Unit. Williams had a family member with Alzheimer’s and said there is often resistance on the part of the patient. “It was difficult to have this woman wear it . . . it was like a mark of something. ‘I’m not wearing anything like that.’” 
But Malack-Ragona said that for people who do take part in the program, 99% of wanderers are reunited safely with loved ones. Project Lifesaver 
An initiative recently introduced in <a href="/topics/Suffolk_County%2C_NY">Suffolk</a> through the Sheriff’s Department is Project Lifesaver. With Project Lifesaver, clients wear a “watch-type” wristband transmitter worn on the wrist, ankle or as a necklace, which emits a tracking signal. Each person is given a unique VH frequency “like a fingerprint,” said Deputy Sheriff William Weick. 
When a caregiver calls the <a href="/topics/Suffolk_County%2C_NY">Suffolk</a> County Sheriff’s Department Project Lifesaver line to report a wanderer, a search team responds and while in route, activates the vehicle’s mobile locator tracking system. A hand-held unit is used to search for clients in areas inaccessible by vehicles. 
They put the frequency into the receiver so that it can pick up the signal and use a directional antenna. Officers divide the area into grids, then narrow the search area as they pick up the signal. “It’s simple but effective technology,” said Undersheriff Joseph Caracappa. 
The department said they currently have nine clients. Local nursing homes and adult day services have also shown an interest, Caracappa said. The national organization states that more than 900 law enforcement agencies in the <a href="/topics/United_States">United States</a> and <a href="/topics/Canada">Canada</a> have used the equipment to find more than 1,900 people who have wandered. 
All of the equipment costs $319.59, including shipping, and gives families a one-year supply of wristbands, batteries and a mini battery tester. After that, it costs $10 a month. Batteries emit a signal every second and must be changed monthly. Project Lifesaver says the assigned public safety agencies keep track of when the battery needs to be changed and will go to the person’s home to do so every 30 days. 
While endorsed by the Alzheimer’s Foundation of America, the Alzheimer’s Association does not support Project Lifesaver, said Mary Ann Malack-Ragona, head of the Long Island chapter of the Alzheimer’s Association. She said she has seen the program fail and would prefer that it be done in conjunction with the association’s own MedicAlert+Safe Return Program. 
“It is not foolproof – nothing really is – but with the MedicAlert+Safe Return bracelet, there is always a way to identify a wanderer and then get him or her medical attention and back to their caregiver,” said Malack-Ragona. 
Nassau’s Det. Lt. <a href="/topics/John_Allen">John Allen</a>, commanding officer of Nassau’s special services squad, which includes adult missing persons cases, also has doubts about Project Lifesaver. “That’s great for some rural area but that doesn’t work here,” he said. “It doesn’t work for the Alzheimer’s patient in a car.” 
Christine Platz, director of Programs and Media for Project Lifesaver said that while the technology range is one mile on the ground and five to seven miles in the air, they are able to mobilize other agencies in the area to track the signal. Neighboring counties may assist in locating missing persons if they are trained with Project Lifesaver and they believe the client to have wandered to a neighboring county, Platz said. 
Critics of the program point to <a href="/topics/Global_Positioning_Systems">GPS</a> as having more accuracy but Weick said <a href="/topics/Global_Positioning_Systems">GPS</a> technology isn’t always reliable. A person who goes missing in a wooded area might not produce a strong signal, he said, nor will a person hiding in a basement or in a multistory building. Satellites might also be impacted by inclement weather, he added. “That’s not what a caregiver wants you to tell them when you’re looking for their loved one,” he said. A radio signal, which is closer to the ground, is more reliable, he said, and the frequency can be picked up 20 miles away. 
Project Lifesaver can help reduce the search time for a wanderer from the average nine hours to 30 minutes, Caracappa said, and the average life expectancy for someone who wanders is only three hours. “So this truly becomes a lifesaving device,” he said. Silver Alert 
In March, the Suffolk County Legislature passed the creation of a “Silver Alert” program to help locate missing seniors and those with cognitive impairments. 
The Silver Alert program, which has already been implemented in 11 states, is similar to the “Amber Alert” program used to find missing children. When a person with a cognitive impairment, such as Alzheimer’s disease, is reported missing, alerts will be posted on highway signs throughout the county and the police will distribute identifying information. A similar statewide bill was vetoed by Gov. David A. Paterson in November. “We’re happy Suffolk County has done this because we’d like to see it done in other counties to show Gov. Paterson that it is seriously needed,” said Malack-Ragona. 
Nassau’s Det. Lt. Allen is skeptical of the program, particularly being used on the county level, since Amber Alert is a state program. “The more localized you’re going do it, the less effective it’s going to be,” Allen said. “And the truth of the matter is Amber Alert is used very, very infrequently, very cautiously, for the primary objective is you don’t desensitize the community.” 
But supporters say the program allows for information to be disseminated quickly and widely, leading to faster return of wanderers. Fifteen states have already adopted Silver Alert and several more are currently considering the program. A measure to set up a national Silver Alert system also has passed the U.S. House of Representatives and will next move to the Senate.

ensafetyprograms

Programs help locate wandering Alzheimer patients

Family members often find behavioral changes in their loved ones to be the most challenging part of caring for someone with Alzheimer's disease. The changes can be subtle, such as overreacting to a mistake or criticism, or more pronounced, such as yelling, making false accusations or inappropriate comments, or even violence. 
Those with Alzheimer's and related dementias often become confused and may forget the names of loved ones, as well as everyday items, such as a fork. They may also forget what such items are used for, experts said. They can ask the same questions repeatedly or make the same gestures over and over. They may sometimes become restless and anxious or begin pacing. Some develop paranoia and may have delusions. They may begin hoarding or accusing their caregiver of stealing from them. Sometimes, they refuse to wash or engage in proper hygiene. The person with dementia often has an interrupted sleep cycle and may stay awake at night and sleep during the day. Also many patients often suffer from "sundowning," where they become agitated and restless at the end of the day. 
Changes in behavior can be triggered by any number of things, from illness or physical discomfort to overstimulation. Often, experts said, family members should get their loved one examined to make sure there aren't underlying medical or psychological issues causing the behavioral changes. Confusion and delusions, for instance, can be caused by a vitamin deficiency or a urinary tract infection, said Teepa Snow, a dementia care specialist and trainer. Many dementia patients also suffer from depression, she said. 
When behavioral changes occur, caregivers need to try and put themselves in their loved one's place, imagining the confusion and conflicting signals their brain is sending them, experts said. For instance, with hoarding, the person may have a fear that they will need whatever they take - food, money, objects - at a later time, or it gives them a sense of security. 
With hygiene, they may not understand that they haven't bathed in three weeks because in their mind, they have bathed every day. With toileting, a person may not understand why they are being undressed or who the person is trying to help them and feel they are being violated. A person may begin to wander because they have a desire to feel safe, to "go home" to a place they associate with feeling secure. 
Often, the patient is frustrated with an inability to communicate or perform tasks they deem too complicated. It is important for caregivers to examine what may have led to the behavior change, experts said, and look at possible solutions, including the way they respond to the behavior. The caregiver should remember to look at the emotions or feelings behind the action, experts said, rather than simply focusing on the behavior. 
"The caregiver really needs to learn how to speak dementia; it's like learning a whole new language," said Darlene Jyringi, who runs the Alzheimer's Disease Assistance Center of Long Island in Stony Brook. "How do you approach the person? How do you talk to the person? What do you do to make situations less frightening, like bathing, like toileting? You need to explain every step of the way." 
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ENBEHAVIORGENERAL

Changes range from confusion to paranoia, violence

The life of a caregiver for a patient with any disease can be difficult. But for the Alzheimer's caregiver, the pain is often magnified by witnessing their loved one slowly disappear before their eyes. 
Patients not only forget that their caregiver is their partner or their child, they also take on personalities and behaviors that are polar opposite of the life they had lived for decades. 
In addition to having to watch constantly to make sure loved ones do not leave the stove on or wander out into the street, caregivers may find themselves yelled at, spit on and physically attacked by their spouse or parent. By the later stages of the disease, Alzheimer's caregivers seeking to keep their loved one at home must provide round-the-clock care, helping the patient perform all daily living functions. 
"When somebody has cancer or some other illness, at least the family member can say to their loved one, 'I have to run out to the drugstore, I have to run out to the supermarket, I'll be back in an hour, don't worry.'" said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Hillside Geriatric Center in Glen Oaks. "You can't do that with somebody with dementia. You can't leave them." 
Caregivers also face constant battles -with government and health care agencies who are determining care and financing, with family members who question the caregiver's decisions and with themselves. Caregivers often try to do it all, resisting reaching out for help until situations hit a crisis point, experts said. 
"One of the things I like to ask caregivers is what's their sanity worth?" Vogel said. "Nobody can do this 24/7. Nobody. Everyone needs help." 
And not everyone is cut out to be a caregiver, said Teepa Snow, a dementia care specialist and trainer who travels the country giving presentations to both caregivers and professionals. There also might be a relationship history that makes caregiving difficult. 
"I might have not been the easiest person to live with before," Snow said. "We are all about saying, 'Well, you're caring for your loved one, great.' And sometimes it is and sometimes there's mixed feelings. You know, it wasn't an easy childhood, it wasn't a good relationship." 
Long-distance caregiving brings its own set of issues, including guilt at not being closer to a parent or loved one who needs care. "There's so much to learn with this," said Beth Signore of the Jewish Association for Services for the Aged in <a href="/topics/Smithtown%2C_NY">Smithtown</a>. "And all of that stress, that anxiety leads to guilt, which leads to more stress. It's a vicious cycle for the caregiver." 
John Rauh, 41 of <a href="/topics/Yaphank%2C_NY">Yaphank</a>, takes care of his mother, Marguerite, 83, at home. He also helped care for his father John, 84, who also had Alzheimer's, until his death in a nursing home in January. Rauh calls caregiving, the "land of lowered expectations." 
"When you get an expectation that you maybe will get a couple of hours off, that a friend, a neighbor or someone can take this person off your hands so you can catch a breath and try to feel like a normal person, for just a little while . . . yeah, that's the land of lowered expectations," Rauh said. 
This strain can often lead to resentment and tension between caregiver and patient, experts said. "I say, well, tell me what you like about your mom," Snow said. "And for many people there's a pause and they go, 'Hmmm, that's a hard one. Well, I love her. I made this commitment and I'm gonna follow through on it' and I say, that's not what I asked. Because the research shows that if there's not a positive connection . . . the risk of abuse or neglect or distress is incredibly high for these folks." 
The stress of caregiving leads many to neglect their own emotional and physical health. Experts estimate that more than half of caregivers suffer from depression and many die before their patient. 
"At some point in this disease process I have to turn my attention from the diagnosed guys to the caregivers," Vogel said. "I've scraped far more caregivers up off bathroom floors on a regular basis from the stress of caring for their loved ones than I do their diagnosed partners." 
Vogel, who leads several caregiver support groups, said these groups provide an opportunity for people to let it all out, to share their stories with others who walk in their shoes. 
"We don't necessarily come up with answers, just understanding and sympathy and empathy and compassion," Vogel said. "So that they can go home maybe a little bit renewed and ready to do battle the next day knowing that they're not alone, there are others out there doing the same thing." 
Maxine Atkins, 67, of <a href="/topics/Melville%2C_NY">Melville</a> attends a support group 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>. "When I meet my friends from LIAF, I don't have to explain how I'm feeling," she said. "We can look at each other and we know what kind of a day it's been. And we can laugh, we can laugh about it. Sometimes." 
Some have trouble finding a support group that meets their needs. A caregiver who is looking after a spouse might not be able to relate to those taking care of a parent. Similarly, those families with early or young-onset Alzheimer's may have difficulty finding those in similar situations. 
Pat Moffett, 62, of Great Neck could not find a support group for young-onset caregivers after his wife Carmen, 66, was diagnosed and he found his own health deteriorating. Now, working with the Sid Jacobson Jewish Community Center in East Hills, Moffett has started a monthly dinner for young-onset caregivers. "They're getting a little relaxation, they're getting a little information," he said. "We get them back kind of in control of themselves again." 
&nbsp; 
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ENCARE

Experts agree toll on Alzheimer's caregivers is huge

For many family caregivers, the first obstacle is accepting the new person their loved one has become. This can be difficult, even as the disease progresses, because those with Alzheimer's often have "honeymoon" periods where their behavior seems to improve, said Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a> who travels the country speaking about the disease. The person may appear lucid and all of the aggression and confusion disappears. 
But Snow warns, caregivers should be careful not to be lulled into a false sense of improvement. They should also not think that because their behavior fluctuates, Alzheimer's patients have control over their actions and that they're simply being ornery when they become combative. 
"It's so hard because you so much want them to be like they were that when you see the evidence they're not, and then they show you that they can, sometimes you think, 'OK, well, then that's willfulness,' " Snow said. "Because when we were kids and we sometimes did things and sometimes not, there was a huge element of being willful. But this is not the person, this is the disease." 
Darlene Jyringi, who runs the Alzheimer's Disease Assistance Center of Long Island in Stony Brook compares the disease's behavioral changes to a fog. "Some days that fog is really heavy and you just can't see your way clear and other days the fog lifts," she said. "And you have to be the one that adapts to that fog lifting and coming in." 
But often, Snow said, a caregiver's desire to correct a patient's vocabulary or teach them actions gets in the way of a harmonious relationship. "There's no point in getting her to get it; you can't," she said. "This is the hard part for us, we want them to know what is true. They don't get it, they can't get it and they don't have a choice in it." 
While some memories and behavior remain with an Alzheimer's patient - songs, prayer and swearing often stay until the end, Snow said - many behaviors fluctuate or become modified as the disease progresses. Whatever curveball is thrown at a caregiver, she said, it's important to try and live in the moment. 
"It's that constant disconnect between what was and what is," Snow said. "And people who can let it go and just be in the moment with the person where they are now are more successful as caregivers versus people who are constantly in that moment of regret, that moment of loss . . . You've got to let go of it and just be in that place. Not everybody can do it." 
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ENBEHAVIORACCEPTING

Expert: Accepting changes first step for caregivers

Alzheimer Decker 5

It was a frigid afternoon with snow still on the ground from a storm the previous day. Mary Williams was in the backyard of her <a href="/topics/Elmont%2C_NY">Elmont</a> home. She just went outside for a minute, but that's all it took for her husband Calvin, who has Alzheimer's, to slip away from the house. 
Police didn't find him until the next day. He was caught trying to break into a silver <a href="/topics/Honda">Honda</a> Accord - the same make, model and color of the family's car - for warmth. Wearing only a sweater, pants and sneakers - no socks or coat - he had walked for hours and hours. He was found in <a href="/topics/Brooklyn_Bridge%2C_NY">Brooklyn</a>. 
Fortunately, Calvin was not seriously injured and despite initial concerns, there was no frostbite on his body. But the 79-year-old has wandered nearly a dozen times in the last few years and his family, frustrated and tired from his excursions, is worried that if he continues to get out, he won't be so lucky. 
Wandering is one of the most common and dangerous behaviors in Alzheimer's patients and also one of the most stressful for caregivers. Mary Ann Malack-Ragona, executive director of the Long Island chapter of the Alzheimer's Association based in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>, said 67 percent of all individuals diagnosed with Alzheimer's will wander during the course of the disease and if the person is not found within 24 hours, serious injuries including death can occur. Every week newspapers across the country report a man or woman turning up dead after wandering away from a home or institution. Some remain missing for years. 
Those who wander do so for various reasons. Some leave without a clear purpose, simply lost in their disease-clouded minds or vaguely hoping to find a place to bring them comfort. Others have a goal in mind, such as a house from childhood or a job location from when they were younger. 
Because dementia patients are unpredictable in their actions and when found are often unable to give identifying information or home addresses to police, they represent a unique type of "missing person." A woman found wandering in a <a href="/topics/New_Jersey%2C_NY">New Jersey</a> mall spent 15 years in state psychiatric hospitals before officials were able to identify her earlier this year. In April, accusations that <a href="/topics/Yonkers">Yonkers</a> police mishandled a wandering dementia patient by putting her in a taxi has led to calls in that community for police training and an official policy on dealing with dementia victims. 
On Long Island, wandering often includes use of a car or other vehicle, adding yet another level of danger, both to the patient and to others on the road. The issue of when a person with dementia should stop driving - and how to get them to stop driving - present some of the biggest obstacles family caregivers face. 
The articles here explore the topics of wandering and driving, offering information and advice. 
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ENSAFETYINTRO

Keeping Alzheimer's patients safe can be tough task

Det. Lt. <a href="/topics/John_Allen">John Allen</a>, commanding officer of Nassau's special services squad, which includes adult missing persons cases, said he sees about 40 Alzheimer missing person cases a year, which is only a tiny percentage of his overall adult missing persons caseload of 600. Still, because of the cognitive issues in Alzheimer's cases, time can mean the difference between finding someone alive or finding them frozen to death. 
"The problem with missing persons cases - we're not very good at finding people," Allen said. "We're pretty good at finding cars, because that's what police do. We're pretty good at finding EZ Passes, cell phones. . . . If you're talking about grandma and grandpa, 90 years old, walked out of the house without a wallet, without car keys, without a cell phone and they walked away and they had a little cash in their pocket and they might have gotten on a bus or a train - they're not easy to find." 
Allen said families often miss signs that their loved one will begin wandering. "They may have been talking to their family about their high school and best friends," Allen said. "But the families often aren't very good at telling us those sorts of things, recognizing those conversations when they take place, it's just 'grandma and grandpa go off about the old days.' Well, it's not, it's the precursor to them going looking for the high school." 
Allen said families are also not forthcoming about the true stage of their loved one's illness or their mobility. He cited a recent case where an 89-year-old woman wandered away from her Jericho home. The woman was identified by her family as slightly forgetful and walking with a cane. She was found more than seven miles away at Garden City High School. 
"They're in denial that their mother or father or loved one is in certain stages of Alzheimer's," Allen said. "They'll say they're slightly forgetful. They're not slightly forgetful, they're in the throes of Alzheimer's. You need to be honest with yourself." 
But those with Alzheimer's or other dementias can be wily when necessary and sometimes they surprise even those in the know. Darlene Jyringi, who runs the Alzheimer's Disease Assistance Center of Long Island in Stony Brook, was a long-distance caregiver to her mother, who lived with her son and his family in <a href="/topics/Massachusetts">Massachusetts</a>. No one in the family imagined that the frail woman who was deep into Alzheimer's would wander, especially since she was tethered to an oxygen tank 24 hours a day. But one time, during the middle of the night, she proved them wrong by putting on her slippers and walking a half a mile in the middle of a snowstorm. 
"For me as a professional, I had a lot of guilt, thinking that this could have happened, even knowing all the other circumstances that she couldn't walk 10 feet," Jyringi said. "But, she was on a mission. And, boy, when people are on a mission, it's amazing what they can do." 
Allen recommends that families take measures to ensure their loved one's safety, such as putting special locks on the doors and using bells or alarms to alert them when doors are opened. 
After her husband Calvin walked from Elmont to Brooklyn in the cold, Mary Williams and her daughter Rainer placed bells under the door. But Calvin soon figured out how to quietly remove them and get out. His daughter was amazed that her father, despite being cognitively impaired, could still understand how to do this and that he also knew to go out a side door of the house, since going out the front door would require him getting past his wife. The family has placed a different type of buzzer alarm on the doors, but Mary is skeptical. 
"It's only a matter of time before he's going to figure out how to turn it off and he's going to be able to ease out of here while I'm here during the day and don't know he's gone," she said. She doesn't know what the next step would be. "It's hard to figure out. Maybe some kind of tracking device," she says with a laugh. 
Allen said that while it can be difficult to slowly strip away someone's freedoms - especially a former authority figure such as a parent - it is a necessity to keep them safe. "You're the best caregiver in the world, at some point in time you have to go to the bathroom," he said. "And they're gonna head for the door." 
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ENSAFETYWANDERING

Many underestimate how far patients can wander

Alzheimer Garzero 4

Caregiving experts often advise that after an Alzheimer's diagnosis, family members meet with an elder law attorney to begin the process of planning for down the road as the illness progresses. 
"I don't think families are well-versed in this," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Hillside Geriatric Center in Glen Oaks. "I don't think they're seeking the legal assistance or financial guidance that they need to do this early on so when the time comes they are prepared." 
Instead of doing all of their planning with a lawyer, some caregivers turn to geriatric care managers or social workers who hire themselves out as guides to those attempting to navigate the system. Orlando Gonzalez, 66, and his daughter Kim Latkovich, 38, both of Manorville, paid a social worker $700 and found the experience both cheaper and faster than dealing with an attorney. 
"Lawyers, I just think a lot of times they just charge a lot of money," Latkovich said. "Whereas I think social workers, they're not interested as much in the money, they're more interested in helping people in whatever field or expertise that they're in." 
But experts advise that attorneys can help best with intricate financial planning. Vincent Russo, an elder law attorney with offices in <a href="/topics/Westbury%2C_NY">Westbury</a>, Woodbury, Lido Beach and Islandia said for him, the first step is determining the person with dementia's capacity for decision-making. 
"Any time I hear the word Alzheimer's . . . decision-making would be my starting point of any discussion because we know that at some point that person is [not going to] have capacity, unfortunately," Russo said. 
If the person is still in the relatively early stages of the disease there are three key documents that need to be made up, Russo said. These are power of attorney, health care proxy and a living will. The power of attorney enables someone to step in and make financial decisions going forward, Russo said, and the health care proxy allows for health care decision-making once the person loses capacity. The living will is a document that allows a person to give instructions to a selected person under the health-care proxy regarding whether they would want extraordinary medical treatment under certain circumstances. 
"<a href="/topics/New_York%2C_NY">New York</a> presumes everyone wants artificial nutrition and hydration under all circumstances unless there's evidence to the contrary," Russo said. 
If the person lacks capacity and these documents are not in place, a guardianship hearing must be held, he said. It's not uncommon in these situations to have more than one family member vying for guardianship, Russo said, and in such cases an independent guardian -- pulled from a court list of attorneys, social workers and other qualified professionals -- may be appointed. 
"We stress to families all the time, especially when we're doing planning, hopefully in advance, that we want to avoid the guardianship," Russo said. "We want to avoid the fights. We want to minimize legal fees . . . " 
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ENPLAN

Protecting Alzheimer patients' legal, financial welfare

Aggression - which can include verbal or physical violence - often emerges without warning, experts said, and is one of the most troublesome behavioral changes. It can sometimes be triggered by the agitation and frustration that often accompanies dementia. Such behavior can also be caused by a change in surroundings, experts said, or having too much or too little stimulation or talking. 
Experts advise that caregivers address aggression by first maintaining a safe environment, removing dangerous objects, providing space to the person who is upset and speaking to them in a soothing voice. Next they should try to figure out the cause of the behavior and make attempts to address it, whether it be altering the environment or focusing on a new activity that does not upset the person. 
Sometimes the aggression can be caused by a physical discomfort that the person with Alzheimer's is unable to verbalize. Because of this, caregivers need to consult a doctor and look for underlying medical causes, experts said. Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Center at Zucker Hillside Hospital at North Shore LIJ, said doctors first try to figure out if there's an infectious process going on in the body that the patient can't communicate so "like small children who get sick and uncomfortable, they act out." 
In cases where the person is violently aggressive, patients are often brought in to a psychiatric hospital and the behavior is addressed with medication. This is often a difficult time for family members, Vogel said. When they see the reaction to the medication - which, among other side effects, can make a person lethargic or result in the loss of other functions - many feel their loved one is being overmedicated, she said. 
"Unfortunately we don't have a perfect answer and we choose between the lesser of the evils," Vogel said. "If they are aggressive, acting out, a danger to themselves, a danger to their caregivers, a danger to their families, we have to do something." 
Vogel said family members can feel as though the medication is a punishment, but in truth, it allows caregivers to be safe and the situation at home to be manageable once again. 
Most importantly, experts said, caregivers must remember that behavior changes such as aggression are not deliberate. Those who have Alzheimer's or other dementias frequently must deal with failure, they said, so caregivers should respond in a way that preserves the person's dignity. 
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ENBEHAVIORAGGRESSION

Safe environment may help ease Alzheimer's aggression

Alzheimer Garzero 13

In 2006, seven years after being diagnosed with Alzheimer's, Tony Lauriano, 78, was still driving. But he was getting lost, driving too close to other cars, making wrong turns and driving too fast. His wife Olga, 70, was alarmed - both for Tony and herself, who, unable to drive, was often the one sitting terrified in the passenger seat. 
She went to her husband's doctor and told her what was going on. The doctor told Tony he shouldn't be driving. Olga was relieved - she wanted Tony to get mad at the doctor, not her. "I'm the one that has to live with him," she said. But Tony wasn't having any of it and continued to drive. 
Olga turned to their son and had him tell Tony he couldn't use the car anymore. Tony reluctantly handed over the keys and Olga quickly sold the almost-brand new car. But Tony wouldn't let the issue go. "I can't understand, why can't I drive?" he would repeatedly say to his wife. Now, three years later, Tony still brings up the issue. "Till this day, he says 'I can still drive,'" Olga says with a sigh. Tony makes his wife continually renew his driver's license, but when it comes up for renewal this year, she said she plans to let it expire. 
"I'm over it, but in the beginning it was tough," Tony said. "I lost something, you know? I've been driving since I was 19 - my whole life. Giving it up, I went into shock. That was my independence." 
Driving is considered one of the hallmarks of adulthood and for many people, especially those living in areas without adequate public transportation, the notion of giving up the car keys is hard to swallow. The struggle over when to force a loved one to stop driving takes place among many older people and their loved ones. Alana Rosenstein, director of early stage programs at the Long Island Alzheimer's Foundation, said the additional challenge with dementia is that while some patients may feel they are capable of driving, the disease can interfere with their decision making and judgment. They might also be less able to handle the multiple inputs of driving situations, she said. 
"If they're going along and everything is routine, they might be OK but now someone is cutting them off on the right and they have to be able to process that and be able to look in their rearview mirror to see what's going on and look in the sideview mirror and make a quick judgment about how to react," she said. "That may be too much for the person to process at once." 
Rosenstein said that some signs that a person may need to stop driving include: If the person is having multiple accidents or if the car is coming home with dings they're really not able to explain; if the person is driving too slow or too cautiously; if the person is missing stop signs or signaling inappropriately. 
Family members often have to battle over the car keys. Regardless of the stage of the disease, a person can sometimes retain the mechanics of driving, even if they've lost the function of driving. "So, they can go out and turn the key on and put the car in gear," said Teepa Snow, a dementia care specialist and trainer based in <a href="/topics/North_Carolina">North Carolina</a>. "What they have no idea is where they're going, and yet they get frustrated when somebody says no because they know what to do. They don't, but they think they do. And so, the caregiver, of course thinks, well, I'll just let him drive as long as he stays local." 
But that can lead to disaster, Rosenstein said. "I always tell people that we're doing a balancing act of safety and independence," she said. "One of the things we tell families is if they can be pulled out of the role of being the bad guy when it comes to driving, then that can make things easier. Because the family member is the one who has to live it day in and day out." 
She suggests having a conversation with the person's doctor to see what his or her perception is of the person's abilities. There are also organizations where, for a fee, a person can have their driving and cognitive abilities evaluated. However, these organizations can only recommend a person stop driving, they cannot enforce it. 
The process of evaluating drivers and determining whether they can have a license varies from state to state. In New York, on the department of motor vehicles Web site, there is a form requesting a driver evaluation. It is anonymous and can be submitted by a physician or someone in the family or community. The person then gets a letter in the mail stating that they need to come in for a driving evaluation. 
But Rosenstein said even the evaluation can be misleading. Alzheimer's patients can often be "on" in certain situations, for a limited time, exhibiting normal behavior. So, Rosenstein said, a person could conceivably pass a driving test because they're having a good day. Ideally, she said, a person's cognitive abilities should be tested. 
Olga and Tony have had to change their lifestyle. Gone are Olga's beloved trips to suburban malls and ability to dine out wherever they choose. A neighbor helps them get to supermarkets and run other errands. "You lose your ability to get to different places and you've got to settle," Olga said. 
"We both lost out in that sense," Tony said. 
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Long Island

ENSAFETYDRIVING

Taking car keys away is a touchy subject for patients

Alzheimer Decker 8

Paying for Care 
The costs of long-term care for Alzheimer's patients can easily deplete even the deepest bank account. Because the disease lasts so long - anywhere from two to 20 years, depending on the stage at diagnosis - and because the type of care needed often falls beyond the scope of government health care programs, families find themselves scrambling to find the money needed to maintain care for their loved one. 
Care is often divided into three groups: at-home care, assisted living facilities and nursing facilities. According to the Alzheimer's Association, in 2008, the average cost of home medical care was $144 for an eight-hour day; the average cost of an assisted living facility was $36,372 a year; and the average cost of a nursing facility was between $69,715 to $77,380 a year. The average cost of adult day services, often utilized by those attempting to keep their loved ones at home, was $64 a day. 
On Long Island, those costs can run even higher, according to elder law attorney Vincent Russo. If someone needs 24/7 care, the average annual cost today on Long Island is $75,000, he said. Local nursing home costs are some of the most expensive in the country, he said, running on average between $10,000 and $14,000 a month. 
"Most people cannot afford to privately pay out of their income," Russo said. "They're going to start spending their assets down and at some point they're going to lose all their assets. And that's the sad story for many." 
Long-term care insurance is a lesser-known option for homecare, but one that can be both expensive and limited, some caregivers said. Russo said he is finding more people looking into long-term care insurance these days. "It's becoming more popular in the sense that those who are the boomers in their 50s and 60s who are starting to experience what is happening to their parents are looking at long-term care insurance as a way of protecting themselves," he said. 
Many individuals are unaware that Medicare does not pay for long-term care. The federal program aimed primarily at those over 65 years old, covers mainly hospital and doctor visits as well as limited post-hospitalization care. But it does not cover assistance with the activities of daily living, such as bathing, dressing and taking the patient to the toilet. 
"The problem with dementia is what's needed by the person who's diagnosed and the families is what's called custodial care," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Center at Zucker Hillside Hospital in Glen Oaks. "They don't have medical needs . . . but just because it's not a medical need doesn't mean it's not necessary. These guys cannot care for themselves in a safe way. And if we would take care of their custodial needs, I think that in the long run, we would eliminate a lot of the medical issues that we deal with later on." 
Medicaid, which is funded by both state and federal governments - and in <a href="/topics/New_York%2C_NY">New York</a> by counties as well - will pay for long-term care at home or in a nursing home or, in a limited way, assisted living facility. Medicaid will also pay for medical model - but generally not social model - adult day services. But the program was designed for low-income individuals and there are many complex restrictions on who can qualify for the coverage. 
"We look at [people who have] low income, [they] has great coverage, we look at people with financial resources, substantial resources, they have no issues, they can handle what gets thrown at them," said Mary Ann Malack-Ragona, executive director and chief executive of the Long Island chapter of the Alzheimer's Association in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>. "Then you've got that whole block of people in the middle who are not eligible for anything." 
With Medicaid for home care, someone comes into the home and makes an assessment of how many hours of care they feel an individual needs. By and large, Russo said, the counties will say that a person doesn't need 24/7 care, although families can appeal. "It's a budgetary-driven thing," Russo said, and the counties struggle under this burden. <a href="/topics/New_York%2C_NY">New York</a> is one of only a handful of states that has counties paying for part of Medicaid. 
The general rule for acceptance into Medicaid, he said, is that you cannot have more than $13,800 in your name if you are single. If you own your home and it's worth under $750,000, then the home is generally exempt from that rule. But, Russo said, when you pass away, Medicaid will look to get reimbursed by putting a claim against the house. 
There are also income restrictions. A single person cannot have an income of more than $767 a month (for senior citizens it is $787). If you make more than that, Russo said, Medicaid mandates you spend the rest on care. In <a href="/topics/New_York%2C_NY">New York</a>, Medicaid also has an initiative called the Long Term Home Health Care Program, also known as the Lombardi program, which provides at-home care for those who would qualify for nursing home care. 
Nursing homes have another set of Medicaid rules and there is a five-year look-back period for the transfer of assets. In assisted living facilities, only a small amount of beds, and a limited amount of services are Medicaid-eligible. 
"The reality is when they created these rules they were rules made at the national level and maybe $100,000 in Mississippi might be a lot of money but $100,000 on Long Island isn't," Russo said. 
Russo said these issues are not being addressed in the current debates over health care reform and that change is needed across the board on how to handle long-term care. 
"I don't really see a distinction between someone getting their heart surgery covered under Medicare but yet if they have Alzheimer's they don't get care," he said. "No one picks their disease. It happens to us and we discriminate right now against people with the wrong disease under the Medicare program." 
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ENPAY

The expensive cost of caring for Alzheimer's patients

Critical to understanding Alzheimer's is grasping the complex interplay between genes and the development of the disease. 
But here's the problem - and it is one of the toughest in medical science: Even though researchers have found three genes intimately linked to early-onset Alzheimer's, the kind of that occurs before age 65, they have yet to pinpoint the elusive trigger that sets the disease in motion. 
Despite the lack of clarity on the precise mechanism triggering an unstoppable cascade of brain-destroying events, scientists are certain of this: If you carry one of the deadly early-onset genes you will definitely develop the Alzheimer's. 
"Early-onset disease is very, very rare," said Dr. Philippe Marambaud of the Feinstein Institute for Medical Research in <a href="/topics/Manhasset%2C_NY">Manhasset</a>, a division of the North Shore-<a href="/topics/Long_Island%2C_NY">Long Island</a> Jewish Health System. "The majority of cases are late-onset disease." 
Working with Dr. Fabien Compagne of Weill Medical College of <a href="/topics/Cornell_University">Cornell University</a> in <a href="/topics/Manhattan">Manhattan</a>, the two researchers last year discovered a late-onset gene, a stretch of DNA on chromosome 10 known as a risk gene. He and Compagne dubbed it the DNA CALHM1. 
Having CALHM1 or any one of the handful of other late-onset genes does not mean you're destined to develop Alzheimer's in old age, just that you're at elevated risk. 
Alzheimer's is a tragedy regardless of the age when it appears. The disease purloins memory starting with the facts, figures and faces most recently learned. As it progresses, it guts the history of one's life, even knowledge of oneself. In the 10 to 20 years it takes for the insidious process to completely rout the mind, the person becomes an incontinent, unresponsive empty shell. 
DNA-hunters worldwide were able to track down defective early-onset genes by studying families in which the disease had deeply seeded itself throughout the roots and branches of the family tree, haunting members over numerous generations. 
Flaws leading to early-onset Alzheimer's can be found on chromosomes 1, 14 or 21. People who possess the defects cannot escape an Alzheimer's fate. 
"I like to use the term deterministic because basically it's like this: If you don't get hit by a truck, you will develop Alzheimer's disease," said Dr. <a href="/topics/Robert_Green">Robert Green</a>. A pioneering Alzheimer's epidemiologist at <a href="/topics/Boston">Boston</a> University, Green has studied the psychological impact that comes with being handed a positive test for an early-onset gene. 
Yet even though there is a difference between carrying an early or late onset gene there are no differences in the pathology that mars the brain. In either case, the brain is mottled with typifying plaques and tangles, proteins that gradually - insidiously - eat away the mind. 
In addition to CALHM1, discovered by Marambaud and Compagne, risk genes for late-onset Alzheimer's are believed to reside on chromosomes 9, 10, 12 and 19. Sweeping searches of the human genome are continuing but the gene-tracking task isn't easy, experts say. 
"These are not families where Alzheimer's is predictably occurring," said Dr. Sam Gandy, a professor of medicine at <a href="/topics/Mount_Sinai%2C_NY">Mount Sinai</a> School of Medicine in <a href="/topics/Manhattan">Manhattan</a> and past chairman of the Alzheimer's Association's medical and scientific advisory council. 
Screenings exists to reveal if a gene for elevated risk is present. Scientists have known for nearly two decades, Gandy added, that APOE-4, a cholesterol-related gene serves as a marker for late-in-life Alzheimer's risk. About 40 percent of all people who develop late-onset Alzheimer's carry the telltale variant, which is present in about a quarter of the U.S population. 
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LIALZXX

Tracking what triggers onset of Alzheimer's disease

Can Alzheimer's disease be prevented? 
Scientists who are trying to answer that question say certain beverages, foods and exercise may hold the answer. 
Dr. Philippe Marambaud, an Alzheimer's researcher at the Feinstein Institute for Medical Research in <a href="/topics/Manhasset%2C_NY">Manhasset</a>, thinks the secret to a healthy brain lurks in wine. And he has embarked on an ambitious study to unlock the secret. 
The Long Island effort grows out of a body of statistical studies, with roots in France, which have long shown that people who are moderate wine drinkers have a strikingly lower risk of Alzheimer's disease. 
Red wines, Marambaud said, are suffused with an abundance of compounds called polyphenols, a family of plant chemicals that act as antioxidants and anti-inflammatory agents, both of which have potent protective effects in the brain. 
<a href="http://www.newsday.com/news/health/alzheimer-s-on-long-island-live-chat-at-noon-1.1524850">Send in questions now in advance and go to www.newsday.com at noon today for our live Alzheimer's chat</a> 
Marambaud, whose institute is affiliated with the North Shore-Long Island Jewish Health System, believes the polyphenol that may help prevent Alzheimer's is called resveratrol. It is not only abundant in red grapes, it becomes greatly amplified in the production of red wines. 
Working with lab animals, Marambaud has found that resveratrol dramatically diminishes a toxic protein that is central to the disease: beta amyloid. "This is a study we started several years ago. We published a paper showing that resveratrol is able to lower the peptide," Marambaud said, referring to the rogue protein. 
"Resveratrol is concentrated in grapes, and mostly in the skin of the grape because it may serve as a protective agent against infection of the plant." The compound is also found in other berry fruits, a host of vegetables and peanuts. 
Marambaud, however, opposes increasing wine consumption to stave off Alzheimer's. He hopes eventually to exploit the red wine compound into a drug. 
But Dr. Vincent Fortanasce, a Long Island native who's now a Southern <a href="/topics/California">California</a> neurologist, says rather than waiting for a drug, there are steps people can take now to keep the disease at bay. 
Fortanasce is the author of the best-selling book, "The Anti-Alzheimer's Prescription." In it, he outlines what he calls a brain-healthy diet rich in fish because of the presence of omega-3 fatty acids. Other food sources he thinks are important in the prevention of Alzheimer's include nuts, green leafy vegetables, berries, especially blueberries. Fortanasce also promotes the practice of getting at least eight hours of sleep and avoiding stress. 
"I realized in my practice that doctors, lawyers and policemen were the most likely professionals to get Alzheimer's. Three of my colleagues, three of the guys I grew up with in medicine, have all been diagnosed with Alzheimer's disease. And what all of these professions have in common is sleeplessness and uncontrolled stress. 
"<a href="/topics/Margaret_Thatcher">Margaret Thatcher</a> has come down with Alzheimer's," Fortanasce added, "and she used to brag that she only got only four hours of sleep." 
Lisa Mosconi, an Alzheimer's researcher at NYU School of Medicine, emphasizes not only the importance of omega-3 fatty acids, but daily exercise. She believes that measures outlined to prevent heart disease may help ward off Alzheimer's. 
"We know that when we exercise, we get better overall oxygen function, and we know that through exercise more oxygen reaches the brain," Mosconi said. 
Critics, however, say Alzheimer's has affected world-class athletes. Dr. <a href="/topics/Peter_Davies">Peter Davies</a>, a world renowned Alzheimer's researcher at the Feinstein Institute, said dietary changes probably will not provide a path to prevention. 
"We see the disease worldwide," Davies said. "The Japanese have a significant problem with it and their diet is completely different," he said, adding it is abundant in fish. 
 
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ENPREVENT11

Wine, exercise and diet's role to stave off disease examined

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. 
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The online project 
Lead Editor: Jamshid Mousavinezhad 
Lead Developer: David Holland 
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Designers: Ray Shahriar, Matthew Hogeboom 
Copy Editors: Martha Guevara, Rosemary Olander, Liisa May 
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Email us at <a href="mailto:alzheimers@newsday.com">alzheimers@newsday.com</a> 
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<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> 
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