Sylvia Mackey

In last week’s post, I talked about attending the 23rd Annual Caregiver Conference — Shedding Light on Dementia Care. The program closed with inspirational speaker, Sylvia Mackey, wife of John Mackey, former football player for the Baltimore Colts, who has frontotemporal dementia (FTD) something common to many football players. She shared her thoughts on how to care for a dementia patient.

According to the Mayo Clinic, frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.

Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer’s disease, typically between the ages of 40 and 70. John Mackey was diagnosed at 60.

Before putting her husband in an assisted living facility, Sylvia was his primary caretaker. They were living in California, but they moved back to the Baltimore area because he was most familiar with that area. She had several examples of using the NFL to convince her husband to do certain things like take a shower. “The NFL commissioner is coming so you need to take a shower” and he would comply.

She had several suggestions to help the caretakers in the audience.

1. Learn to laugh; it has no side effects. She recommended Finding Meaning with Charles.
2. Use creativity to solve new challenges.
3. Focus on one positive thing when in a challenge.
4. Reflect on special moments.

Sylvia showed us an unconditional love for her husband and through laughter and tears was an inspiration to all of us. To read more about the couple, click here.

This being the week of Thanksgiving in the United States, I am grateful to all of you for pausing to read my blog. I wish all of you a very safe and Happy Thanksgiving!

Ronald P. Culberson

Last week I attended the 23rd Annual Caregiver Conference, Shedding Light on Dementia Care. Ronald P. Culberson, author of Is Your Glass Laugh Full? opened the session. His speech titled, “”Humor and Caregiving: How to Lighten Up When Things Get Heavy,” was well received by the audience of about 200. On a dreary, wet day in Fairfax, VA, what better way to open a conference than a speaker talking about why humor.

In stressing why humor, Culberson said humor is a way to do two things:

1. Manage stress
2. Connect with others

As a way to manage stress, he said if you can laugh in the midst of stress, it cannot overwhelm you. He emphasized that you have to see humor all the time, otherwise you won’t be able to deal with it when you’re stressed. Humor is always there if you’re always on the lookout for it. In our world, however, Culberson said sometimes we seem to love to “out negative” each other.

Second, humor can help us connect with other people. We tend to like people with a sense of humor. When you share humor, funny things happen; it changes the relationship. Hence, humor should be used as a tool.

I bought a copy of Culberson’s book, Is Your Glass Laugh Full? at the conference. Somewhat autobiographical in nature, he shares incidents in his life and presents them in a delightful, humorous fashion. It’s a book that’s difficult to stop reading. Being a primary caretaker is not easy and extremely stressful. I highly recommend this book to remove some of the stress.

If there was a simple recipe for care-taking, life would be a lot easier. But every case is different. For example, I met someone at the conference whose husband has been diagnosed with Alzheimer’s disease. He will not cooperate and listen to anyone and hence, she’s unable to bring in outside help. He sleeps during the day and is up all night. This conference was a good chance for her and others to get away for the day and get some ideas from the wonderful attendees, speakers, and vendors.

Sponsored by The Northern Virginia Dementia Care Consortium, I was not aware of it previously (probably because my attention was not focused on Alzheimer’s), but I’m definitely looking forward to it next year.

One of the grestest lessons I’ve learned about humor is that it is all around us, in every corner of our lives. If we keep our humor antennae up and look for laughs we’ll find reasons to smile every day. ~Ron Culberson in Is Your Glass Laugh Full?

from Reuters.com

In July of this year, Reuters reported that new tests assessing brain changes and body chemistry are showing promise at diagnosing Alzheimer’s disease in its earliest stages. Studies presented at an Alzheimer’s Association meeting in Vienna, Austria included:

1. Irish researchers found scans measuring brain volume and a combination of memory tests accurately identified nearly 95 percent of people who had progressed from mild cognitive impairment to early Alzheimer’s disease.  Michael Ewers of Trinity College Dublin and colleagues studied 345 participants in the ADNI study with mild cognitive impairment, a precursor to Alzheimer’s. They looked at an array of tests and found three memory tests plus MRI measurements of brain volume in the left hippo campus — a region closely linked to memory — were most predictive of disease progression.
2. U.S. researchers found that a type of brain scan that measures glucose combined with low scores on memory tests was a strong predictor of disease progression. Susan Landau of the University of California, Berkeley used data on 85 patients and found positron emission tomography scans that measure glucose in the brain and poor memory recall were strong predictors. People who did poorly on these measures were 15 times more likely to progress to Alzheimer’s within two years.
3. A team at Duke University in North Carolina led by Dr. Allen Roses found that a gene called TOMM40 raises Alzheimer’s risk. The gene predicted the age of Alzheimer’s development within a five- to seven-year window in people over 60. It is closely linked to another Alzheimer’s gene called APOE4. Both APOE4 and TOMM40  account for an estimated 85-90 percent of the genetic effect according to Roses.

As was mentioned in Part 1, there’s progress, but we still have a long ways to go to find an effective test. But even if we were to have a conclusive test, doctors still have very few effective treatments for Alzheimer’s disease. And still, as it has been for a long time, only an autopsy will reveal definitively whether or not a person truly has Alzheimer’s disease.

Although there is still no conclusive test for the determination of Alzheimer’s disease (AD), there is hope and occasionally, new information. Last month, Science Daily reported that:

Elderly people exhibiting memory disturbances that do not affect their normal, daily life suffer from a condition called “mild cognitive impairment” (MCI). Some MCI patients go on to develop Alzheimer’s disease within a few years, whereas other cases remain stable, exhibiting only benign senile forgetfulness. It is crucial to develop simple, blood-based tests enabling early identification of these patients that will progress in order to begin therapy as soon as possible, potentially delaying the onset of dementia.

A group of investigators, led by Professor Massimo Tabaton of the University of Genoa, Italy, have data that sheds light on this issue. The results of their research are published in the October issue of the Journal of Alzheimer’s Disease.

The investigators report that the concentration in blood of amyloid beta “42,” the toxic molecule that is believed to be the main cause of Alzheimer’s disease, is, on average, higher in MCI cases that went on to develop Alzheimer’s disease approximately three years later. The values of amyloid beta in blood vary considerably among the patient groups examined (MCI that develop Alzheimer’s disease; MCI stable; normal subjects). “This variability is likely very important,” Dr. Tabaton noted and went on to add, “but means that this needs further work before we can use this test for a definitive diagnosis.” For example, the scientists are going to set up a test that picks up a variant of amyloid beta potentially more specific of the disease.

There’s progress, but we still have a long ways to go to find an effective test. A conclusive blood test would certainly be ideal. But even if we were to have a conclusive test, doctors still have very few effective treatments for Alzheimer’s disease. And still, as it has been for a long time, only an autopsy will reveal definitively whether or not a person truly had Alzheimer’s.