Judy
Gosh, aren't they cute there?
My name is Judy and my father Ishmael had Alzheimer's. He passed away 10 years ago. He was diagnosed at the age of 61. I'm a single mom. I have a daughter Valentina and she is an Aerospace Engineer so she is a rocket scientist and she's a great kid.
Valentina
Papa Ish was very special to me. I had him as a grandfather until I was about 12 years old and that's when the decline began, but those years were very special.
Dr. Jessica Israel
My name is Dr. Jessica Israel. I am a specialist in the care of older adults. Generally my patients are older than 65 and my grandmother had Alzheimer's disease and she was an amazing woman and to know that the people who were caring for her had no idea, that's what makes me want to be an advocate for people like that and to make that effort to find out who's this person in front of me.
Today I'm gonna visit a friend of mine whose father had mild to moderate Alzheimer's disease and I met him very close to the end of this illness.
Super: dramatic health presents in association with Novartis Pharmaceuticals Corporation
In visiting her I'm hoping we could see a little bit more about how this disease affects the people who care for the patient. A lot of this illness is about caregiving.
Judy: hi!
Dr. Jessica Israel: Hello!
Judy: How are you?
And I think that Judy's story about her father is a great example of that.
Title Card: House Calls: Mild to Moderate Alzheimer's
The Caregiver Video Education Series
Discovery
Judy
This is very cool. This is my dad and my mom.
Dr. Jessica Israel
Wow. He has a lot of siblings with Alzheimer's right?
Judy
Now he does.
Dr. Jessica Israel
Was he the oldest?
Judy
My dad was the oldest and he was the first. This is when my dad was about 61.
Dr. Jessica Israel
And what kinds of things were you seeing then?
Judy
I noticed on my sister's birthday that he gave me a gift and it was my sister's birthday and not mine and I knew something was wrong because he was so keen with numbers. To me that was a shocker.
Dr. Jessica Israel
Did you tell him?
Judy
I kind of sensed that he knew that there was something wrong.
Dr. Jessica Israel
It's very hard to confront like the patriarch of a family and say, I think that there's something wrong.
Early Symptoms
Judy
My father was a creature of habit. Our routine was on Saturdays we would go shopping at the supermarket. I noticed that he was duplicating items. He would have double of everything and so that's when we decided to schedule an appointment to see his physician.
Dr. Jessica Israel
In early stage disease what most people look for – it's short-term memory loss that's the biggest thing, you know, people will forget that they just said something.
Judy
We took him to his physician and several weeks later he had a CAT scan and then he was diagnosed.
Dr. Jessica Israel
It's uncommon to diagnose mild to moderate Alzheimer's disease on a CAT scan. In some patients you get one, but you really get one to rule out other things. So when someone comes to me with a complaint of memory loss, the place I get sort of my most information is not so much from any testing, but from all the people in the waiting room that came with that person and the stories, while they're all different, there's a thread that links them all together. There's a very gradual change that sort of slid under their radar initially and then became something more obvious to the people that love this person.
Unanswered Questions
Dr. Jessica Israel
So hearing a diagnosis of mild to moderate Alzheimer's disease is obviously very life altering for the patient but also for the people who are sitting in the room with them and are gonna travel through this journey with them. How did you feel when you first heard that?
Judy
I was afraid. He was 61 years old. We had never expected that he would be diagnosed at such an early age. I didn't know what to expect which is hard for a caregiver.
Dr. Jessica Israel
The thing with Alzheimer's disease is that there are always gonna be unanswered questions down the road. There's very good data that supports that a patient with mild and even moderate disease can say, I trust my daughter, I want to live here, those types of questions needs to be asked, how would you want to see things go, because you predictably know that there will be absolutely be a time that they can't answer those things.
Caregiving Evolves
Dr. Jessica Israel
How did your role in your dad's life as his caregiver change as his disease progressed?
Judy
I learned very quickly how to multitask and I had good friends who would pick up Valentina in a minute. It was a challenge. It really was. I think in all honesty I tried to keep us all together and make sure that we were strong for each other and making sure other family members participate is key and that's all part of, you know, self care, you know, hey I need an hour.
Virginia
You can't help somebody if you're not well. If you're not well mentally, emotionally, to care for someone.
Judy
Correct.
Virginia
We did the best we could possibly do.
Judy
Right. One of the things that I always found difficult was taking care of myself and I think that that's one of the important things that caregivers must do.
Dr. Jessica Israel
It's critically important for a caregiver to have the right kind of support through the process of the illness. It's very important for caregivers – it sounds so simple – but to eat, to sleep and to make sure that their basic needs are met and to not feel guilty about the fact that they need moments to just breathe.
The Caregiver's Voice
Judy
It's important that physicians understand what the impact is on a caregiver and that they're part of that patient's team.
Dr. Jessica Israel
Because they are the ones that are missing work. They are the ones that are experiencing things first hand that they're not even sure how to express. They are the ones that are coming into the office with not just their voice, but the patient's voice.
Judy
You know, as much as we cried, we did also laugh, and it wasn't out of cruelty, we just thought that my dad would have said, oh my gosh, I can't believe this is going on. One time he left the house and he had his pajamas on, but he always wore his cap and here he was walking down the street, chuckling, and with his hat on.
Virginia
This is the one that I found him in when he took off in the middle of the night at 4 in the morning when he decided to go to work.
Dr. Jessica Israel
That's a really good point. Even though it's sad and even though there's a loss, there's still a place to be a family and to have those moments of laughter. But even that gentle kind of poking fun that you do to someone who has no cognitive problems, that does something a little bit, a little bit silly - that's part of the rhythm of life, and you have to have those moments.
Advice
Dr. Jessica Israel
So looking back, what kind of advice would you give other caregivers of patients with this illness?
Judy
One, you're really not alone, there are people out there that can help you, and two, you have to take care of yourself because that person you're caring for needs you. You know, after my father died I looked back and I think did I do my best in taking care of him and making the decisions that I made for him and they were hard decisions but I think that I needed to make them.
Dr. Jessica Israel
I'm so grateful that you shared these stories about what it was like to take care of your dad and that's the way you pull in the help and the things that will make a difference to the person that you'll care about. There are lots of resources for caregivers. There's the physician's office, there are physician extenders, social workers, geriatric social workers, case managers, there are support groups, there are websites.
Valentina
You both set amazing examples as caregivers and, I mean, I feel that, you know, God forbid I would have to take on that role, I would feel ready to, because I've already, you know, experienced it by watching you, so –
Virginia
don't cry you're gonna make me cry.
Dr. Jessica Israel
I know that we can learn a lot from caregivers – as caregivers can learn a lot from other caregivers and I'm hoping that this series will help bring that into the homes of people who are looking for it.
Title Card:
The hallmark symptom of mild to moderate Alzheimer's disease is a change in cognition, which includes things like memory, reasoning, understanding and communication Self-care is critically important, and essential to a caregiver's ability to care for a patient There are many resources available for caregivers. No one has to do this alone. Laughter, love and life still happen Never lose sight of the person behind the patient
House Calls: Mild to Moderate Alzheimer's
The Caregiver Video Education Series
A Dramatic Health Production
(Below FB in Scrolling Text & Voice Over)
INDICATIONS
EXELON® PATCH (rivastigmine transdermal system) is a prescription medicine used to treat people with mild to moderate Alzheimer's dementia.
EXELON PATCH is also used to treat people with mild to moderate Parkinson's disease dementia (PDD). Persons who have been diagnosed with Parkinson's disease for at least 2 years and in whom other causes of dementia have been ruled out may have PDD if they experience trouble with the following: executive function (i.e.remembering things, solving problems, and planning), memory retrieval, and attention.
IMPORTANT SAFETY INFORMATION
EXELON PATCH should not be used if the patient is allergic to rivastigmine or any of the other ingredients of EXELON PATCH, or has had an allergic reaction to a similar type of medicine. Speak to the doctor before using EXELON PATCH.
Mistakes in using EXELON PATCH have resulted in serious side effects; some cases have required hospitalization, and rarely, led to death. Most mistakes have involved not removing the old patch when putting on a new one and the use of multiple patches at one time. Only one EXELON PATCH should be worn at a time. If you accidentally apply more EXELON PATCHES than you should, remove all EXELON PATCHES and inform the doctor immediately.
At higher than recommended doses, EXELON PATCH is associated with significant stomach related side effects such as: nausea, vomiting, diarrhea, decreased appetite, and weight loss. For this reason, people should always start at the low dose. Your doctor may change the dose as needed. If you have not taken EXELON PATCH for more than three days, do not start taking it again until you have talked to a doctor.
In a study, the most common side effects with EXELON PATCH were nausea, vomiting, and diarrhea.
Weight should be checked while the person is using EXELON PATCH. Weight loss/loss of appetite may occur. People below 50 kg, or 110 lbs, may experience more side effects and may have to stop using EXELON PATCH due to these side effects. People at risk for stomach ulcers or who take certain medicines should tell their doctor before starting EXELON PATCH, because serious stomach problems such as bleeding may occur. People with certain heart conditions should tell their doctor before starting EXELON PATCH because they may experience fainting or slow heart rate. People with serious lung conditions and difficulty breathing, bladder problems, or seizures should consult their doctor before using EXELON PATCH. Extrapyramidal symptoms (e.g. uncontrollable facial or body movements, including tremor, restlessness) could occur or get worse. Parkinsonian symptoms, particularly tremor, have worsened in Parkinson's disease dementia patients treated with EXELON capsules. People on EXELON PATCH who feel dizzy or drowsy should not drive or use machines. Tell the doctor about all other prescription or nonprescription medicines the patient is taking. EXELON PATCH should not be taken at the same time with other medicines that have a similar effect on the body and the brain (cholinomimetic agents) or with anticholinergic medicines. Inform the doctor if the patient needs surgery requiring anesthesia while using EXELON PATCH.
Please see EXELON PATCH Full Prescribing Information, and EXELON PATCH Patient Product Information
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch,or call 1-800-FDA-1088.
Novartis is proud to offer Patient Assistance Now, an easy-to-use, comprehensive resource that allows you to access programs that may help you pay for your Novartis medicines.
