A Conversation About…Alzheimer’s Disease
(Long Island, N.Y.) If you think you can disregard Alzheimer’s disease as something that doesn’t effect you, you might want to think again: According to the Long Island Alzheimer’s Foundation, it is estimated that 135,000 individuals in Nassau, Suffolk, Queens and Brooklyn currently have Alzheimer’s disease and this number will soar nearly 25 percent to an estimated 169,000 by 2020.
Another alarming statistic: Close to 500,000 New Yorkers will have Alzheimer’s disease by the end of the decade. Although we tend to think of this disease as effecting only the elderly, but some people can develop symptoms as early as the age of 40.
I recently spoke with Barbara Vogel, Director of Social Work at Long Island Alzheimer’s Foundation about this devastating disease.
Long Island Exchange: From your experience, what’s the most common myth about Alzheimer’s Disease?
Vogel: That it’s just a little memory loss—and there couldn’t be anything even farther from the truth.
What is the truth?
The truth is, it is a devastating, insidious, degenerative cognitive illness that starts off certainly with memory loss and develops into people being unable to care for themselves in any way, shape or form. They have trouble with what we call ADL’s (activities of daily living) which include: dressing, bathing, eating, meal preparation, paying bills. It impacts every facet of their lives, as well as it impacts the entire family like no other illness I have ever seen.
For a family who has a relative who has been recently diagnoses—scared to death about the road ahead—what’s your advice?
Call us. Find out who we are, get involved with our support groups and educational programs. Know that we have programs that can assist the diagnosed person at every level. From the early stage right through the advanced stages. We are very well connected to ALL the spheres that need to be addressed.
What do you think would be the biggest fear for a family faced with this disease?
The biggest fear would be that they are not going to be able to afford the care that is going to be required, because usually the kind of care that is required is what we call custodial care: That is, supervision and assistance with their ADL’s. And none of the entitlement programs provide for that until we get to the Medicaid level.
There must be many levels of fears.
There’s also a stigma. A huge stigma that goes along with any illness that strikes that organ. Any illness that strikes the brain there is an unspoken belief that if people tried harder or were stronger in character—that they’d be OK. When in fact, this is an illness like any other. Whether it strikes your heart, liver, lungs– the brain is another organ that’s just as susceptible to illness. And these are real illnesses. These are nothing that people can control.
Is that a common misconception—that you can control it?
Yes. I hear it from caregivers who are living with someone who has Alzheimer’s who’ll say, “You know, if they only tried harder they can do better”. And my answer is always, “If they could they would. They can’t try harder. You have to accept the limitations here.”
Do you think what families faced with this illness really need…is a shoulder?
They need a shoulder. What we do here at the foundation: We are in the business of holding hands. We are on staff at many of the larger geriatric offices around the North Shore where people can come in with their loved ones when they notice “something weird is going on with dad” and have the diagnostic work done.
We’re there to meet them when they receive this bombshell and establish with them what we hope will be a therapeutic relationship where we can journey with them as they go down the road with this illness.
When someone suspects their loved one (a grandparent, mom, dad, spouse) may have Alzheimer’s disease, do you think there is often hesitation to get tested and make it official with a diagnose?
Absolutely. I have people who come in here all the time and say, “Oh, they’re very early on.” And the people will walk in here in the dead of winter wearing inappropriate clothing. You’ll start to talk to them about their grandchildren and they can’t remember their names. These people are clearly NOT in the early stages.
There is a lot of denial. Denial is a wonderful coping mechanism but I tell everyone I speak to: Don’t linger there too long because you’ll miss the boat. The earlier you start introducing them to support services ( other people assisting them and involved in their lives) the better.
But those that wait until the very end when people are so frightened, so confused, disorientated—and NOW you want to start introducing new people into their lives?
What would be some of the very early signs that it could be Alzheimer’s disease?
The early signs would be memory loss. If there’s no memory loss, it’s not Alzheimer’s disease. People come up to me and say “my mother has been diagnosed with dementia”. Dementia is not an illness. Dementia is a symptom. There are many things that will cause dementia, memory loss and confusion. Remember, depression causes dementia. So does Parkinson’s, drug interactions, vitamin deficiencies—there are lots of causes.
We always encourage people to get to the right doctor and let’s eliminate. Alzheimer’s disease is what we call a diagnoses of exclusion. Which means, we try to exclude all those other things that can cause dementia. If we screen for all of that and that’s not what’s happening, we put it under the general Alzheimer’s umbrella. Alzheimer’s disease cannot be definitively diagnosed until autopsy, although were are pretty darn good at it now.
Anyone who is taking on the colossal task for caring with a loved one with Alzheimer’s disease, do they need support?
Yes. They also need to accept the fact that no one can do this alone. No one can do this
24-7. We have a program where the spouses can drop off their loved ones and get some time for themselves. Caregivers need time for themselves. Selfish is not a bad word when dealing with this illness.
We scrape more caregivers off the bathroom floors on a regular basis then we do their diagnosed counterparts. The diagnosed person gets everyone’s time and attention and in the process the caregivers wear down and wear out, and they themselves end up in the hospital.
What are some ways Long Island Alzheimer’s Foundation can help?
We have a hotline 866-789-LIAF(5423) that is manned by a licensed social worker who has been very carefully trained in all aspects of the illness. We are the largest resource and referral center on Long Island and we can put you in touch with doctors, home care agencies, and very importantly attorneys.
When you are dealing with a neuron-degenerative illness, legal matters become of the utmost importance. At some point, patients will lack “capacity” and cannot sign off on legal work. So it’s very important to get the legal stuff done early on in the illness, when the diagnosed person can participate in the decision making process and we can have these conversations so we know what their wishes are.
So how can Long Island residents help your foundation?
By making donations. We are not-for-profit so we exist strictly because of the kindness and generosity of those who have accessed our services or have dealt with this illness. Also, you can always volunteer for us–just get involved and help raise awareness about this illness.
If you’d like to help out the Long Island Alzheimer’s Foundation in any way or learn more about their programs, visit www.liaf.org