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Dear Friends,
 Recently, while going through my files, I found a grant proposal
written years ago by my predecessor, Jean Marks. I was struck
by how much we have grown and how many more services are
in place since the early days of the Chapter. I was also struck
by how similar the problems are, for families confronting the
devastation of Alzheimer’s and related disorders. I quote, (please
note that in 1990 it was customary to refer to the person with
dementia (PWD) as “patient” and “victim”)
“From the outset, families are unprepared for the course of the disease and the level of care
needed. Caregivers find themselves responding to a multitude of problems that they might never
have expected, but which are a common part of the disease. Patients become decreasingly alert to
conventional behavior and the necessities of self-maintenance. They often refuse to eat, bathe, or
change their clothes, citing that they have just performed these actions. Medical complications become
much more difficult to identify as the patient may not indicate any physical troubles. Therefore, the
caregiver must monitor for dehydration, pneumonia, constipation, urinary or bowel incontinence,
pressure sores, loss of coordination or balance, and hidden injuries caused by falls or accidents, all of
which can accompany AD.
The caregiver also has to pay close attention to changes in the patient’s behavior... attempts to
conceal memory loss, wandering and getting lost, sleep disturbances, losing or hiding things, inappropriate
sexual displays, repetitious questioning or actions, clinging or following, complaining or insulting
others. They can suffer from depression, apathy and listlessness, uncontrolled anger, nervousness and
restlessness, misinterpretation, agnosia, suspiciousness, paranoia, delusions and hallucinations.
The caregiver becomes a prisoner in a world governed by emotional pain and irrationality. The
unpredictability of the victim’s illogical behavior and medical complications demands that the caregiver
remain attentive to the patients needs 24 hours a day. The caregiver’s life revolves solely around
the patient. He or she cannot have a personal agenda or schedule. It might not be possible for the
caregiver to leave the home or even the patient’s line of sight.
Under the stress and fatigue caused by this intensive burden of care, the caregiver goes through
dramatic emotional stages: denial, anger, and guilt, ending in frustration and hopelessness. It becomes
increasingly difficult for the caregiver to remember that it is the disease that is the cause of the problems
and the resulting emotions, and not the deliberate actions of the loved one. Increasingly isolated from
friends and relatives, beginning to question their own sense of reality, the caregiver is left demoralized
and helpless with seemingly no escape.”
Then as now, we know that relief is possible. Through a variety of supportive interventions;
education, information, care consultation, support groups and access to a 24-hour
Helpline, we help caregivers feel understood, and begin to plan for the care that both
they and their relative with dementia need.
Our Alzheimer’s Association Safe Return® program provides an additional measure of
security for over 6,500 NYC families. However, I continue to question why, when we
estimate that there are over 200,000 people with ADRD in NYC, we have registered
only 6,500 persons? What is the resistance to getting help? I have a few thoughts, and
welcome yours:
- Denial is a powerful and initially useful mechanism
that protects us from hearing devastatingly
bad news. However, when denial is prolonged, it
prevents one from functioning in the best interest
of the person with dementia.
- Stigma – Even in 2006 there is still considerable
stigma associated with AD. We still get requests from
callers asking us to send information in unmarked
envelopes so the mail carrier or neighbors won’t
see the word Alzheimer’s in the mailbox.
- Avoidance – even though it isn’t logical – our
emotional minds don’t work logically – it is normal
to wish or hope that if one doesn’t acknowledge
that change is occurring, it really isn’t happening.
It is also normal to avoid something that is painful.
Who wants to hear that a relative has AD, or deal with it?
- Pride – Many families feel that it is a sign of weakness to ask for help, although we know the enormous toll that caregiving can take on family members.
- Lack of knowledge about available services. Friends and relatives from around the country call me, because they have a friend or colleague who has a relative with AD, and they don’t know where to turn for information and support in their own communities.
We are here to help. You and those you know do not
need to suffer alone. I encourage all New Yorkers to reach
out and ensure that relatives, friends, neighbors and members
of their communities know about the critical services
offered at no cost by the New York City Chapter.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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