On May 13 my world changed. It was a change I thought might be occurring. It was a change I had been researching. It was a change that I desperately did not want. On May 13, my husband was diagnosed with frontotemporal dementia or FTD. With those words, the care manager became a caregiver.
The journey has been difficult to date, but nothing compared to what lies ahead. In 2009 my husband was diagnosed with hyperthyroidism. He had lost around 25 pounds and was demonstrating symptoms of depression. But being a salesman in the current economy was a daily exercise in frustration to say the least, so I thought I understood. His symptoms were treated but only the thyroid tests showed significant improvement. The depression lingered, and none of the usual medications seemed to help.
There was one symptom that made me quite curious. My husband declined to help with our finances. I would ask him questions about unusual bills or investment decisions that needed to be made, but he said he didn’t understand how I was handling our money. After several attempts to explain my way, I asked him to lay out our monthly payments in a way he understood, and we would talk from his perspective. He never quite got around to doing that.
In the meantime, our loving bond seemed to be strained and sometimes felt non-existent. What in the world was happening??? Was our marriage in trouble? My husband showed little interest in planning anything whether it was a trip to the grocery store or a trip to Mexico. Something was really wrong. Where should I look to find more answers?
Since we had covered the possible physical ailments, I decided it was time to take a look at his emotional and cognitive well-being. I asked his doctor for an order for neuropsychological testing. I half expected him to decline my request; instead he gave the order to me without hesitation. The test results indicated some depression and some deficit in the executive functioning area of the brain – the frontal lobe. Fear set in. This must be a mistake. Surely not MY husband!
From there we visited a neurologist who ordered an MRI. The results were normal for my husband’s age – but we expected this outcome. Then the doctor asked if we wanted to have a PET scan: a high-tech imaging test that looks at the brain differently than an MRI and is more accurate in diagnosing FTD. We said yes; and the scan said yes. Degeneration of the frontal lobe, and some left temporal lobe as well as some right temporal lobe degeneration. Frontotemporal dementia.
Since May 13th, we have attended more doctors’ appointments, adjusted to changes in medication, applied for Social Security Disability Income (SSDI) and quit his job, completed a driving assessment (he passed with restrictions), are very thankful we had decided to buy long term care insurance, and are now living as normal as possible until the disease changes our lives completely.
I will continue my work as a geriatric care manager, but I am closing down both my blog and my podcast session with Kevyn Burger. Both decisions sadden me deeply, but I know I want as much time to be with my husband as I can find. Every minute of every day that I know he is in our home with me makes me happy. I feel his presence even when he’s sitting on the deck reading or vacuuming the rugs or taking a nap. I want to imprint these moments in my mind.
Deborah Dolan, the Advocate on Aging, and Kevyn Burger, host of the show, discuss the Social Security Administration’s (SSA) decision to add early-onset Alzheimer’s disease to Compassionate Allowance Initiative. Under this initiative, the SSA finds individuals with certain diseases/conditions eligible for Social Security disability.
Bloomberg.com recently reported that five new genes have been definitively linked to Alzheimer’s disease, which doubles the total number confirmed by scientists. This found information creates new areas for research into an illness that affects 35 million people globally.
“Hope grows with every small step taken toward identifying how to immunize against, treat or stop altogether this difficult disease called Alzheimer’s,” said Deborah Dolan, Advocate on Aging. “Here’s a little more hope and inspiration to add to what we know.”
Until very recently there has not been a national plan in the US to deal with the issues of Alzheimer’s Disease and dementia. Deborah Dolan, Advocate on Aging, and Kevyn Burger, host of the show, discuss the signing and launch of the National Alzheimer’s Project Act (NAPA) and the effects it will have on research and support for Alzheimer’s Disease. The new plan is going to help develop the treatments that are designed to prevent, halt and reverse the course of Alzheimer’s.
Podcast Links:
National Alzheimers Project Act (NAPA) - On January 4, 2011, The National Alzheimer’s Project Act was signed into law by the President of the United States after having been passed unanimously in both the Senate and House of Representatives. Once enacted, NAPA will create a national strategic plan to address and overcome the rapidly escalating crisis of Alzheimer’s.
Alzheimer’s Association – Their mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support to all affected; and to reduce the risk of dementia through the promotion of brain health.
In a recent article from the Star Tribune titled “Nursing homes are seeking to end the stupor,” reporter Warren Wolfe dug deeper into the issue of antipsychotic drug usage in long-term care centers for patients with disruptive behavior. According to Eva Lanigan, a Minnesota nurse and resident care coordinator who was quoted in the article, sedation or drugging is a common practice in nursing homes used to control patients exhibiting troublesome behavior or those suffering from dementia. This often leaves the patient in a sluggish, disoriented state, leaving Lanigan to wonder, “What kind of quality of life is that?”
Lanigan felt that more beneficial options have to be available for treating residents struggling with behavior issues. As Wolfe reports, Lanigan began working with a psychiatrist and a pharmacist to develop alternative methods to deal with disruptive behaviors. The new methods include “aromatherapy, massage, games, exercise, personal attention, better pain control and other techniques” instead of solely relying on drugs to subdue the individuals. Once all staff members were trained and encouraged to interact with the dementia patients, the results were astounding.
The staff eliminated antipsychotic drugs and they were able to cut the use of antidepressants for patients by half over the first six months. The result, Lanigan said, “The chaos level is down, but the noise is up — the noise of people laughing, talking, much more engaged with life. It’s amazing.”
Deborah Dolan, Advocate on Aging, applauds the efforts of Ms. Lanigan and Ecumen. “Those of us caring for the elderly hate the drug induced stupors Ms. Lanigan refers to in this article and believe that many elderly are over medicated,” said Deborah. “Physicians add new medications and increase dosages without taking other medications away. The result is more and more medication in an elder person’s system – a system that doesn’t process medication as well as a younger person’s body. However, in my experience, such calming tools as aromatherapy, massage, exercise and the other methods mentioned are supplemental to medication. It will be interesting to see if Ecumen is able to maintain the costs of such training and resident to staff ratio. We hope it works, it’s affordable, and the use of anti-psychotic medication continues to decrease, as it will bring a higher quality of life to our loved ones.”
According to an announcement from PRNewswire.com, a new addition to the Patient Protection and Affordable Care Act reveals that an annual wellness benefit will be provided for all qualifying Medicare beneficiaries beginning January 2011. This new benefit includes a “detection of cognitive impairment” that will be a mandatory part of the annual wellness visit. This screening can help detect early stages of devastating diseases that affect mental functioning, such dementia and Alzheimer’s.
The report emphasizes the great impact that this new addition will have on patients because the first wave of baby boomers will soon be turning 65 years of age.
“The spouse or caregiver of an aging person usually detects changes in cognitive functioning first and most often dismisses the changes as ‘getting older’ or ‘insignificant’. If you are a caregiver for an elderly person, make sure that you remain aware of that person’s mental functioning in order to detect signs of cognitive impairment,” said Deborah Dolan, Advocate on Aging. “Early detection is the best way to keep your loved ones safe so that they can get the help that they need as soon as possible. Ask a physician to screen elderly patients for cognitive impairment if you see any of the 10 warning signs of Alzheimer’s or other related dementias. It’s quick, non-invasive and will provide a baseline for future testing.”
You slavishly complete the daily newspaper crossword puzzle, eat enough olive oil to single-handedly solve Greece’s economic trade imbalance and take your brisk morning stroll like clockwork. You may do these things for their own pleasure and satisfaction, but also because you hope they may keep you mentally sharp and promote active senior living.
Busy mind, Mediterranean diet, active lifestyle. Each of these strategies have been linked to lowering the risk of Alzheimer’s Disease in preliminary studies.
But a new, comprehensive review of a 165 studies failed to confirm that any of these strategies will provide a guaranteed protective effect against the cognitive disease.
A group put together by the National Institutes of Health looked at 165 studies to tease out whether lifestyle, diet, medical factors or medications, socioeconomic status, behavioral factors, environmental factors and genetics might help prevent Alzheimer’s and other forms of dementia.
The study found that while lifestyle factors, including consuming omega-3 fatty acids, being physically fit and participating in leisure activities, are associated with a lower risk of cognitive decline, the current evidence is “too weak to justify strongly recommending them to patients.”
The panel also found that there is “insufficient evidence to support the use of pharmaceutical agents or dietary supplements to prevent cognitive decline or Alzheimer’s disease,” the panel wrote.
However, smokers and people with diabetes do have an increased risk for cognitive decline, the panel found.
The study revealed that Parkinson’s is more prevalent in the Midwest and the Northeast. It also found that whites and Hispanics are twice as likely to develop Parkinson’s disease as blacks and Asians.
A neurodegenerative condition, Parkinson’s disease causes tremors, stiffness, slowness, mood and behavioral disorders and sleep problems. The disease is characterized by loss of dopamine, a compound involved in communication between brain cells.
Genetic factors explain only a small number of cases of Parkinson’s disease. Researchers continue to evaluate environmental factors as likely common contributors. Risk factors may include exposure to herbicides and insecticides used in farming or to metals such as copper, manganese and lead.
Researchers note that the Northeast and Midwest are the two regions of the country with the highest concentration of metal processing and agriculture, and chemicals used in these fields represent are the strongest potential environmental identified as potential risk factors for Parkinson’s disease.
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