Today, there are an estimated 5.4 million Americans living with Alzheimer’s disease. And while most people associate the disease with old age, the fact is there are 200,000 Americans under the age of 65 living with it today. As with all forms of the disease, early-onset Alzheimer’s is a progressive, terminal disease, which cannot be prevented, cured or even slowed.
Since the onset can occur in people as early as in their 30s and 40s it often strikes during an individual’s prime working years, and as the disease progresses it prevents gainful employment. As a result, individuals are coming to grips with a devastating diagnosis all while losing employment and the salary and benefits that come with being employed. These individuals and their caregivers then must figure out how they will pay for their care.
Thankfully, since 2010 the Social Security Administration (SSA) has helped these individuals by adding Alzheimer’s disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions that meet the SSA’s disability standards for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). This allows for faster payment of Social Security benefits to individuals with Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia.
The Alzheimer’s Association actively worked with the SSA for the inclusion of early-onset Alzheimer’s disease and advocating on behalf of individuals with early-onset (younger-onset) Alzheimer’s disease. As the SSA was considering this decision, the Alzheimer’s Association provided comments to the administration and commissioner, held numerous meetings with SSA staff to advocate for the inclusion of Alzheimer’s disease and related dementias, and Alzheimer’s Association CEO Harry Johns testified during the SSA’s public hearing about the inclusion of early-onset Alzheimer’s disease. Since then we have worked closely with the SSA in support of the implementation of this Initiative nationwide and to educate our community about this benefit.
And since its implementation it has had a profound impact on the Alzheimer’s community, helping thousands of families including Tom and Julie Allen. Tom was looking for a way to help manage the costs of Julie’s Alzheimer’s care, since his retirement and two part-time jobs were not enough to cover the large costs of Alzheimer’s disease. Through working with the Alzheimer’s Association and the SSA he was able to secure for Julie the SSDI benefit.
Social Security benefits are very important to individuals with early-onset who are unable to work and have no other source of income. At the Alzheimer’s Association we hear from family caregivers about the challenges they face paying for care. As was the case with Tom, the financial complications and solution finding falls to the caregiver. That is just one of the reasons why we celebrate November as National Family Caregiver Month and we take time to honor the 15 million caregivers for those living with Alzheimer’s disease.
Coconut Fish Curry
“Brain foods” are neuroprotective, fighting Alzheimer’s by lowering risk and helping to resist cognitive decline. This flavorful dish combines 4 of the best “brain foods”: fish, coconut oil, curry and fenugreek. Enjoy its Indian flair.
Curry Derivative J147 Beats Aricept for Alzheimer’s
The Coconut-Oil-Dementia Diet
- 3 – 4 pieces of fish (I like using mackerel or pomfret)
- 1 can coconut milk
- 1 small onion, thinly sliced
- 1 cup cherry tomatoes
- 1 tbsp curry powder
- 1 tsp red chili powder
- ½ tsp dried fenugreek
- 2 tbsp coconut oil
- salt, to taste
- Heat coconut oil in a non-stick pan and fry onions till soft and transparent.
- Add salt, red chili powder, curry powder and fry for a minute or two. Add in coconut milk, dried fenugreekand pieces, and cover cook for 15 – 20 minutes till is cooked through.
- Add a little water if desired.
- Add cherry tomatoes and let it cook for another 4 – 5 minutes till tomatoes become soft.
- Serve with warm plain rice and fresh cucumber slices.
The link Between Disrupted Sleep and Alzheimer’s Disease
A longstanding belief is that Alzheimer’s Disease destroys one’s biological clock and leads to disrupted sleep. This theory is now being debunked by researchers out of Cambridge, Berkley and other prestigious universities. Researchers were admittedly not sure what caused the disruption but are now confident they have found the link. New information has been brought to light, literally, by studying the sleep patterns of glowing protein in fruit flies and beta amyloid build up in the brain. These breakthrough studies allow us to take the preventative measures that are most likely to be effective as well as bring us closer to finding a cure to Alzheimer.
Cambridge’s Link Between Sleep, Beta Amyloid and Alzheimer’s
Researchers tracked the biological clock of fruit flies both with and without Alzheimer’s Disease by attaching a light emitting protein to another protein that forms the biological clock. They also tracked the sleep patterns of both groups of fruit flies using infrared beams. When the flies were awake the beam broke enabling them to track sleep patterns. What they found was that the sleep patterns tracked by the beams were extremely different between the healthy flies and the Alzheimer group, yet the glowing protein tracking the biological clock was the same. This showed that it is highly unlikely that Alzheimer’s damages the function of a human’s biological clock.
According to one of the authors of the study, Dr. Damian Crowther of Cambridge’s Department of Genetics, “Until now, the prevailing view was that Alzheimer’s destroyed the biological clock. What we have shown in flies with Alzheimer’s is that the clock is still ticking but is being ignored by other parts of the brain and body that govern behavior. If we can understand this, it could help us develop new therapies to tackle sleep disturbances in people with Alzheimer’s.”
So if Alzheimer’s does not impair the biological clock sleep/wake rhythms, then what does? The answer lies in a protein called beta amyloid. Berkley researchers studied the sleep patters of participants finding that quality sleep helps to cleanse the brain of the harmful beta amyloid buildup that causes poor memory and memory loss. Senior author of the study explains the problem of the finding saying, “The more beta-amyloid you have in certain parts of your brain, the less deep sleep you get and, consequently, the worse your memory. Additionally, the less deep sleep you have, the less effective you are at clearing out this bad protein. It’s a vicious cycle.”
What does this mean for Alzheimer’s Disease?
It’s very suggestive that there is indeed a link and if we proactively improve sleep there is a chance that chain can be broken. Researches are in the process of conducting a five year study on a new set of participants. They will be tracking sleep and beta amyloid protein build up in the brain. Researchers say they are optimistic that if they can intervene by improving sleep, they just may be able to break the cycle. These studies allow us to be informed on the latest research so that we are able to best care for our loved ones and take preventative measures ourselves such as making sure we are getting a good nights sleep. Unfortunately, as of today Alzheimer’s Disease can attack even those of us who seem to do everything right. The raw truth is that we don’t have one magic answer to prevent or cure this disease. What we do have, however, is more information than ever before on ways we can take care of ourselves in efforts to prevent and the slow down progression of memory loss.
Are you getting a good nights sleep? Talk to your doctor if you or a loved one experiences sleep disruption or battle daily fatigue.
The Caregiver Bill of Rights
I have the right…to take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
I have the right…to seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.
I have the right…to maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
I have the right…to get angry, be depressed, and express other difficult feelings occasionally.
I have the right…to receive consideration, affection, forgiveness, and acceptance from my loved one for what I do, for as long as I offer these qualities in return.
I have the right…to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
I have the right…to protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.
I have the right…to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
Adapted from the book, CareGiving: Helping an Aging Loved One, by Jo Horne, published in 1985 by the American Association of Retired Persons.
Emergency Plans are Crucial for Caregivers
Something happened recently that really has worn on me. My wife was deathly sick. She has suffered with a disease since she was 17 years old and experiences flare-ups from time to time.
We have dealt with them for years now, but last weekend she was worse than usual. That is what it seemed to me at least. When someone you love is sick or injured, you feel helpless. You try to do everything you can for them.
I also found out something that my own disease causes; I literally felt useless. What could I do? I told her Friday evening that if she didn’t improve, we were headed to the emergency room first thing Saturday morning.
She wasn’t any better on Saturday. In fact, she was probably worse. But she assured me she would be alright and just needed to stay in bed and sleep. We did what we always do when this happens: make sure she gets additional medications she needs and let this run its course.
Normally, I understand what this is, and I realize that this has happened many times over the years, but this time, for whatever reason, was very difficult for me.But last weekend was very scary for me. As a dementia patient, I felt firsthand how helpless I was. I think I may have slept two hours all weekend. I checked on her constantly, and spent a great deal of time sitting in our front room just wondering what to do.
I wanted to share this experience to point out that, in some cases, when the spouse or family member of a dementia patient becomes ill, try to pay special attention to the one they care for as well.
I thought very long and hard before writing about this. I have thought about it, and many times thought this sounds very inconsiderate of me to be worried about what I was going through when she was as sick as she was.
But it is indeed a very, very scary thing for the dementia patient when their primary caregiver is incapacitated. Phyllis June was much better Sunday night, but I was just as scared then as I was on Friday night.
I knew we were close to having her hospitalized, which has happened in the past as well. But the very thought of this scenario had me scared to death. We seldom think of what to do in situations like this, when a spouse or whoever becomes sick, is injured in a car accident, or somehow incapacitated to where they are unable to do what they normally do for the patient.
I am pretty self-supportive so far. I don’t need someone looking after me around the clock, but the mere fact that she wasn’t able to tell me what day it is, what time it is, what I was supposed to be doing, etc., was horrible.
As a patient, I can tell you that we depend on someone, even if we don’t communicate that. I talk all the time about routines and how important it is that patients stick to their daily schedule, even if you don’t realize they have one.
My main routine is the most important thing to me—more important than each breath I take. My wife is my routine, and I cannot fathom life without her. We all feel this way about our spouse, parents, kids, etc.
But once again, what we just went through with Phyllis June being so sick was a real eye opener for me for some reason. I found myself sitting around worrying about what I was going to do. I have never put myself before my wife before. This disease did that. It had me so concerned about what I was to do for her, and anxious over whether she needed to be hospitalized. I thought I was being self-centered, which is something I never have been.
Phyllis June is back to normal as of last night. This will no doubt happen again. In addition to our normal care plan, we will need to have some sort of emergency plan in place regarding actions I need to take when this does occur again.
And then, of course, we’ll probably need to have another plan at the ready. There is always a considerable likelihood that your Plan A will not work in these scenarios. This is something I hope each of you think and talk about before something like this happens in your immediate family.
No doubt, when this happens again, I will not remember the fear I went through the last time, nor will I realize that things will be alright. Dementia does this. I will not recall that things always get better when she has these flare-ups. I will only know that I cannot do anything to help and have that same helpless feeling again.
Be sure you have a plan in case, for whatever reason, you are not able to care for your loved one, be it for just a day, a week, or however long. Life happens. But as I have said many times, we are not capable of living in your world anymore. Family members and caregivers must live in ours. As selfish as this may sound, we need to have things kept as normal as possible, even when things are indeed chaotic.
Comfort Objects Can Help Console Dementia Patients
When my mother was very small, her best friend was Edward Bear. Apparently she talked to him constantly.
By the time I came along, the old bear was pretty battered. His eyes were long gone, and his hind paws were unstuffed and unravelling.
For most of my childhood, he lived in the toy box with a moth-eaten golliwog, an inane knitted monkey and a pile of plastic dolls.
Occasionally my siblings and I threw building blocks on top of Mum’s bear, but mostly we ignored him.
Miraculously, Edward Bear survived.
Several years ago, when our elderly parents had moved to rest homes, we began the daunting task of sorting out the house and readying it for sale. Someone found Edward Bear snoozing at the back of a wardrobe. We brought him up north where he lived quietly for a couple of years on a shelf at my sister’s house.
Several months ago, Mum spied Edward Bear and asked to take him to the rest home with her.
I’ve never heard Mum talking to him, but she tells me she does. All the time.
According to Mum, Edward Bear doesn’t say much, but he knows how to listen. He likes physical contact too—apparently a kiss on the nose is the thing.
“Have you said hello to Edward Bear?” asks Mum. So I kiss him.
“He doesn’t like it when people ignore him,” says Mum. “When they’re gone, he growls.”
Mum reckons that getting Edward Bear back is the best thing that’s happened since she moved out of her home.
Naturally, this week’s move back to her previous rest home was quite an event. “Does he know what’s happening?” I asked in the days leading up to it.
“Of course,” said Mum. “He’s feeling quite unsettled.”
On the day of the move, we worked all morning shifting Mum’s stuff.
We packed up and we drove to the new rest home. We unpacked and we tested the bed.
We talked about where to hang her pictures, and then we opened the last box.
There was Edward Bear, lying on top of a nest of scarves. He was wearing a slightly imperious expression.
Where to put him? Mum looked around for a while, then sat him gently on the corner of the tallboy. “I like this room,” she said. “It has a very nice outlook.”
Then she looked at Edward Bear. “I think he approves.”
A comfort object, transitional object, or security blanket is an item used to provide psychological comfort, especially in unusual or unique situations, or at bedtime for small children. Among toddlers, comfort objects may take the form of a blanket, a stuffed animal, or a favorite toy.