Catherine Wilson.

Thursday, April 23, 2009

Catherine Wilson, Bureau Chief
Northern Westchester

Identifying And Dealing With Dementia

Last month, an elderly woman was found wandering in Yonkers. The Police Department identified where she lived and placed her in a cab to
be taken home. However, the police did not notify her next of kin or determine if she was capable of going home unescorted or if she even had
her house keys with her to get back into her home.

Fortunately the cab driver assigned to her handled the situation correctly, avoiding possible disaster. He did not drive off when he dropped
her at her destination; rather he waited to see if she was able to enter her home. She was not, since she had indeed forgotten her house keys.

The driver then went through the woman’s possessions, identified her next of kin, and informed her daughter of her mother’s dilemma. Given the thousands of elderly and dementia victims in Westchester, the ineffective response of the Yonkers Police Department is concernful. At
a minimum, this woman should only have been released to a relative; she should not have been allowed to go home alone. Ironically, a minimum-wage cab driver handled this situation more responsibly than highly-paid“trained” professionals.

According to Michele Muir, Communications Director for the Westchester Chapter of the Alzheimer’s Association, there are at least 22,000 known cases of Alzheimer’s and other dementias in Westchester County. “That statistic is probably extremely low,” Muir warns. “Many
individuals are undiagnosed so the actual number of victims could easily be twice that amount or more.” Muir also noted the high rates of dementia and Alzheimer’s among the elderly, far greater than heart disease and cancer rates. “Alzheimer’s strikes one out of every two individuals over the age of 85,” Muir said.

As the population ages and survives diseases such as cancer and heart attacks, the likelihood of a local resident being diagnosed with dementia or Alzheimer’s in their lifetime is extremely high. For that reason, the Westchester Alzheimer’s Association has joined a statewide coalition to lobby for passage of the Omnibus Alzheimer Service Act of 2009 in Albany.

According to the Alzheimer’s coalition, the Omnibus Act would “create a statewide Silver Alert system; this is a prompt response and
notification program used by law enforcement to help locate cognitively impaired citizens who have been reported as missing. Among its other provisions this legislation would allow for the education and training of police officers with regard to individuals with Alzheimer’s’
disease or other dementias.

This legislation is necessary to implement statewide protocols aimed at returning individuals with Alzheimer’s disease or other dementias to their home as soon as possible. National statistics have shown that individuals suffering from these diseases, who are missing for over 24 hours, have a 60% chance of not being found alive.”

In addition, the Coalition has requested the following appropriations in the New York State 2009-2010 budget
for Alzheimer’s related programs:

• $351,000 for Alzheimer’s Disease Community Assistance Programs;

• $250,000 for education, support services, and early diagnosis related to Alzheimer’s;

• $250,000 for the services and expenses of the Alzheimer’s Association chapters;

• $225,000 for the Alzheimer’s Disease Coordinating Council.

In short, the Alzheimer’s statewide coalition is requesting only slightly over $1,000,000 for assistance with a disease that has the highest probability among all diseases of affecting any one of us as we age. This disease eventually robs its victims of all cognitive understanding
and the ability to perform bodily functions.

At the final stage, most Alzheimer’s victims lack any awareness of their surroundings and all memory of their lives, as if they never lived at all. But, despite the horrific consequences of this disease, the high probability of its occurrence, and the growing number of victims as the population ages, the coalition’s proposals in the Omnibus Act were vetoed by Governor Paterson late last year. In 2008, the members of both the New York State Assembly and the New York State Senate passed legislation introduced by Senator DeFrancisco, the Omnibus
Alzheimer’s Services Act of 2008. This act was based on the following findings by the State legislature:

“The legislature hereby finds and declares that over 330,000 New York citizens are diagnosed with Alzheimer’s disease and other dementias, and that one in eight citizens over the age of 65, and half of those over the age of 85, are affected by these diseases.

The legislature further finds and declares that 70 percent of Alzheimer’s disease and other dementia patients are cared for at home by family
members, in what are often extraordinary and moving acts of love and devotion during the progress of the disease, which on average lasts between five and fifteen years and is marked by progressive symptoms that, over time, make the patient completely dependent on their caregivers.

The legislature further finds that a common behavior of this disease that causes great concern for families and caregivers is wandering, and that there have been several recent incidents in which a New York State citizen diagnosed with Alzheimer’s disease or other form of dementia has engaged in wandering, and the locality was not equipped with the tools necessary to locate them in a timely manner, with the unfortunate result that these individuals never returned home to their families.

The legislature therefore finds and declares that it is imperative that New York State and its localities develop plans to ensure that, in the event an individual with Alzheimer’s disease, dementia, or other cognitive impairments is missing, the appropriate technology and infrastructure are available and can be easily and timely activated to protect the health and safety of these vulnerable citizens.”

Ms. Carolyn Keleher, the Communications Coordinator for Senator DeFrancisco, provided an outline of the provisions in this act to aid Alzheimer’s and dementia victims:

• Authorizes the Office of Aging to enter into contracts for training for law enforcement personnel on issues related to persons with cognitive impairments;

• Establishes the Silver Alert system for the location of missing persons with cognitive impairments;

• Requires the Coordinating Council for Services Related to Alzheimer's Disease and Other Dementia to make recommendations on
certain technology to be used for the location of persons with cognitive impairments.

After success in the New York State Senate on June 19, 2008, the original Omnibus act then immediately passed the New York State Assembly on June 24, 2008 and was forwarded to Governor Paterson for his signature. However, just before the Thanksgiving holiday, on November 24, 2008, Paterson vetoed this bill with the following explanation:

• Because there are over 600 law enforcement entities in New York State, this bill could result in several hundred different locally-based "silver alert" programs, assuming that these local jurisdictions were willing to invest the resources necessary to support such a program. By contrast, DCJS (New York State Division of Criminal Justice Services) already runs a statewide alert system for missing children, which allows it to send alerts to as many as 16,000 recipients, including law enforcement entities, media outlets, highway systems, and airline, train and bus terminals. With no additional resources, and within an hour of receiving legislative authority to do so, DCJS could modify
its system to include alerts for missing persons with cognitive impairments.


• The current DCJS Basic Course for Police Officers already includes lessons on persons with disabilities, including materials relating to persons with Alzheimer's disease. There is no need for the State Office for the Aging, at a potential cost of over $2 million annually, to develop a separate curriculum, or to administer a program in which "outside contractors" would provide such training.

• This bill would specifically require training on one particular type of locator technology, the MedicAlert+ system developed by the
Alzheimer's Association. I have been advised that there is other locator technology being used in this State, and it is conceivable that technological advances will lead to the creation of different types of systems in the future. It therefore seems prudent to allow DCJS to use its best judgment.

• Finally, the bill would require the Coordinating Council for Services Related to Alzheimer's Disease and Other Dementia, which is co-chaired by DOH and SOFA, to review and make recommendations regarding the best use of locator technology. This legislative authority is unnecessary, because the Council may review that technology at any time without such a mandate. Moreover, this provision also would
mandate each State agency participating in the Council to post on its website information with respect to where to buy the technology, and the costs, benefits and disadvantages of each option.

Using public resources to promote and endorse products sold by profit-making entities could violate Article VII, Section 8 of the State Constitution, which prohibits money of the State to be used "in aid of any private corporation or association, or private undertaking."
The Governor’s explanations above, however, ignore the following facts:

1. Since New York State already has an “Amber Alert” system in place to locate missing children, the State could easily adapt this system to include Alzheimer’s and dementia victims. Therefore, the governor could have negotiated for a drafted amendment to this legislation to do this, rather than vetoing the bill entirely;

2. The “Basic Training for Police Officers” offered by the State Division for Criminal Services is not mandatory. According to Janine Kava, a
spokesperson for the DCJS, “It is up to each police department to set their own training standards”. A review of the DCJS website revealed only one “Basic Training” course that was offered in the State within the last six months, and that was in Utica; a prior course was held in Niagara Falls;

3. Most families with dementia and Alzheimer’s victims turn to the Alzheimer’s Association for help. Consequently, these families use the
Association’s Medic Alert devices to track their loved ones. Any advances in technology could just as easily be adopted by the Alzheimer’s Association and not just DCJS. In addition, the Alzheimer’s Association, through its very existence, offers more expertise in determining the selection of appropriate devices to aid victims. The expertise of DCJS centers on law enforcement, not care-giving and medical diseases, rendering their judgment here less effective;

4. The State already uses public resources to “promote and endorse products sold by profit-making entities”: Westchester County’s Department of Seniors promotes the Medic-Alert company’s devices on its website and printed directory.

The Department of Seniors also sponsors “Project Lifesaver”, defined by the County as “A program that helps find missing seniors who suffer from Alzheimer’s and other forms of dementia and are prone to wandering.

The initial cost for training and equipment is $54,440; the bracelets are free to the first 100 clients in this pilot program. Additional people who enter the program will pay an initial fee of $385, $300 for the bracelet and $85 for the first year of battery changes. Depending on the senior’s income, that fee would be waived or paid on a sliding-scale basis.” The devices are sold by the Project Lifesaver Foundation, a
non-profit organization.

The County notes that “the Westchester County Office for the Aging was designated by the New York State Office for the Aging as the Area Agency on Aging to serve all persons 60 years of age and older in Westchester”; ergo, State money is already being used by Westchester
County to promote products.

Side note to readers: Westchester County maintains a branch of the DCJS in Valhalla. A review of the offerings of this branch reveal that no
police training courses are to be held there at all in April; only two were offered in March; only one one-day course was offered for the entire month of February; and while two two-day courses were offered in January, one, the major crimes homicide course, was cancelled. Which begs the question, why are we paying tax dollars for a training facility and staff that are not being utilized to their maximum capabilities? Why not consolidate the multiple DCJS training centers in the Hudson Valley into one facility and use the money the State would save to protect our seniors by establishing the “Silver Alert” system?

In contrast to the lack of the “Basic Training” course for police officers which allegedly contains instructions on how to handle Alzheimer’s victims which could not be verified by the Guardian by press time, the DCJS routinely offers throughout the State a week-long course on “Crisis Intervention” on the specialized skills police officers need to “interact with individuals who are mentally ill or emotionally disturbed
in ways that are safe, appropriate, and effective.

Course topics include indicators of emotionally disturbed behavior, mental health issues that have special significance for juveniles and the elderly, key provisions of State Mental Hygiene Law, suicide, Kendra’s Law, actions that officers should take or avoid, selected types of mental illness, and the impact that certain types of medication can have on a person’s behavior.

There will be opportunities to practice or critique carefully constructed role plays, and students will return with a toolbox of resources that can help agencies take better advantage of community resources”. This training is available, at no charge, to police officers, parole officers, correction officers, and others who interact with people in crisis and the mentally ill in the criminal justice system only. But if DCJS can manage to offer such a comprehensive course on issues with the emotionally and mentally ill, why can’t they also offer specialized training for the proper handling of dementia victims?

The New York Legislature noticed this lack of training and attempted to address it with the Omnibus Act. Governor Paterson vetoed this legislation alleging that the DCJS State agency already handles this specialized training of police officers. But both recent incidents and the acknowledgement from DCJS that this training, if indeed offered, is “not mandatory”, indicates a lack of protection for our elderly neighbors from the very government departments obligated to protect them.

It therefore falls upon local residents, like the Yonkers cab driver, to look out for and protect possible dementia victims wandering in our neighborhoods. The Alzheimer’s Association offer guidelines and protective services for these victims. Michelle Muir noted that, “If you
encounter someone showing signs of Alzheimer’s disease, he or she may seem disoriented or confused. Because Alzheimer’s disease affects the part of the brain where memory is stored, the person may be unable to answer your questions” and offered some quick tips for helping a person with dementia during a crisis:

When you encounter a person with dementia:

• Identify yourself and explain why you’ve approached the person;

• Maintain good eye contact;

• Speak slowly and calmly; loudness can convey anger; do not assume the person is hearing-impaired;

• Use short, simple words;

• Ask “yes” and “no” questions;

• Ask one question at a time, allowing plenty of time for response;

• Maintain a calm environment;

• Instead of speaking, try non-verbal communication.

Muir also noted that, as in the Yonkers incident, family members often are not aware that their loved ones are at risk for wandering. Wandering can be dangerous, even life threatening, for the person,” Muir cautioned. “The stress can weigh heavily on caregivers and family”.
She advised that “People with dementia who wander often have a purpose or goal in mind. They may be searching for something that is lost or trying to fulfill a former job responsibility,” and offered the information available from the Alzheimer’s Association on what to look for to determine if your family member is at risk for wandering and the possible causes and prevention techniques for wandering problems:

A person may be at risk for wandering if he or she:

• Returns from a regular walk or drive later than usual;

• Tries to fulfill former obligations, such as going to work;

• Tries or wants to “go home” even when at home;

• Is restless, paces or makes repetitive movements;

• Has difficulty locating familiar places like the bathroom, bedroom or dining room;

• Checks the whereabouts of familiar people;

• Acts as if doing a hobby or chore, but nothing gets done;

• Appears lost in a new or changed environment.

Wandering can be caused by several factors, including:

• Medication side effects;


• Stress;

• Confusion related to time;


• Restlessness;

• Agitation;


• Anxiety;

• Inability to recognize familiar people, places and objects;

• Fear arising from the misinterpretation of sights and sounds;

• Desire to fulfill former obligations, such as going to work or looking after a child.

Tips to reduce wandering:

• Encourage movement and exercise to reduce anxiety, agitation and restlessness;

• Ensure all basic needs are met, i.e. toileting, nutrition, thirst;

• Involve the person in daily activities, such as folding laundry or preparing dinner;

• Place color-matching cloth over doorknobs to camouflage;

• Redirect pacing or restless behavior;


• Place a mirror near doorways. A reflection of their own face can stop them from exiting;

• Reassure the person if he or she feels lost, abandoned or disoriented. Tips to protect a loved one from wandering and getting lost:

• Enroll the person in MedicAlert + Safe Return;

• Inform your neighbors and local emergency responders of the person’s condition and keep a list of their names and telephone numbers;

• Keep your home safe and secure by installing deadbolt or slide-bolt locks on exterior doors and limiting access to potentially dangerous areas;

• Never lock the person with dementia in a home without supervision;

• Be aware the person may not only wander by foot but also by car or public transportation.

The Westchester Chapter of the Red Cross also provides services for dementia victims and elderly residents. Abigail Adams, Director of
Communications, spoke of several programs the agency has to assist family members in looking out for their loved ones. “We provide an ‘Early Watch’ alert,” Adams noted.

Local seniors can register with the post office and a special label is placed inside their mailbox, not visible to anyone else. If their mail is not
picked up regularly, the postal carrier will notify the Red Cross who, in turn, will contact specified family members. “We also provide weekly “check in” calls to local house-bound seniors as part of their “Call to Care” program”, Adams noted.

A dedicated group of volunteers of all ages helps run these critical programs and services for the local Red Cross Chapter. Anyone interested in these programs can contact the Red Cross directly at 914-946-6500.

For families who have loved ones suffering from dementia, or suspect that their loved ones may be in peril, can contact both the Westchester
County Department of Seniors at 914-813-6400 or the Westchester Chapter of the Alzheimer’s Association at 914-253-6860.