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 Manhattan, 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 United States.
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 Long Island - 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, Manorville 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 Ronkonkoma, 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 Baldwin, 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.
Jeffrey Hammond, spokesman for the New York State Department of Health, 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 Government Accountability Office 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 U.S. Department of Health and Human Services 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 North Carolina. "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 Port Washington 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 Bronx, 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&browser=IE%7C6%7CWin2000&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True