Feb 032012
 

As millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate. Her passionate plea to the NFL, one of the most powerful organizations in sports, resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game . . . and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day. But, in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor. He was and still is considered one of the best tight ends to ever take the field. In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.
As a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history. It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown. It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia. Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker. At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down. One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” said Sylvia.

But, this year was different. There was an incident with the TSA airport security that almost took them both down – literally. Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned. In his mind, he did not understand that there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote that courage is grace under fire. When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great. It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself. That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International. She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove items precious to him. In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names. One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions. Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

Sadly, John Mackey lost his battle with dementia and passed away in 2011. A few years before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term-care (LTC). In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today. The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007. The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare. Prepare. Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book on celebrity caregivers and the lessons of love and caring that will be published in November, 2012.
©2012 Sherri Snelling

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Jan 132012
 
Caregiver Mondays

Answer: One Resolution for Caregivers –52 Chances to Make It Work

Ahh the New Year is here – the hectic pace of the holidays is over, the frenzy over buying gifts and seeing  friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – that moment to put the world on “pause” and get a break never seems to happen.

When it comes to caring for an older parent, a chronically ill spouse or a child with special needs, we know that caregivers are at risk for adopting bad habits such as smoking or drinking, for not getting enough sleep, for not having the time to eat or exercise right and for not taking enough time to focus on themselves – whether it is a coffee date with a friend, a pedicure, a movie or other things that can bring a smile to our face.

This is why my wish for all caregivers this year is to make a promise to yourself that you can keep.  Make it simple.  Make it just about you.  Here are some tips on how to get there:

3 Steps to Keep That Promise to Yourself

1.       First of all, you need to have an actual plan. If you just have a desire to improve something, it is not enough.   You will be more successful at achieving your goal if you have steps on how to get there.  For instance, it is not about losing weight – it is about the changes you will take to reach that goal.  Breaking a big goal into small increments is a key part of your plan.

2.       In addition, you need to track your progress.  This instills a sense of mini accomplishments on the path to your goal.  It helps to talk to someone who is invested in seeing you be successful.  Having a friend or other support person who can be your “cheerleader” – celebrating your milestones towards the goal can help keep you going.

3.       Lastly, be committed to your goal.   Keep it simple (one resolution is better than two or three) and treat occasional “slips” as temporary setbacks on the path to reaching your goal.  You have to commit to change.   This is a marathon not a sprint.  Be kind to yourself if you have a bad day that makes you reach for the chocolate.  Remember the words of Scarlett O’Hara, “Tomorrow is another day.”  Start fresh the next day after a lapse.

My Answer:  Me Time MondaySM

I had the luck of meeting with a non-profit organization that I thought had a brilliant idea.  It is called Healthy Monday – based on scientific research and the support of prestigious institutions such as Johns Hopkins University, Syracuse University and Columbia University, they have found that starting a new routine on a Monday will make you more successful at whatever you want to achieve.  Essentially the premise is simple – just as the New Year is a time when we resolve to do something, every Monday is an opportunity to renew that promise to ourselves.

Healthy Monday says their research shows that most Americans feel Monday is the day for a fresh start.  It is part of our cultural DNA – Monday is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend respite.

For caregivers, I believe using the Monday point in time to remind you of “what have I done for me lately?” would make sense.  Whether it is 5 minutes or 5 hours – it does not matter.  Check in with yourself every Monday and take time for you.

I was thrilled when Healthy Monday created a specific Caregivers’ Monday campaign.  They are part of a national movement to get our society focused on the value of family caregivers and the need to help caregivers stay healthy themselves.

Fifty-two weeks to reach your goal.  Pick one thing that you would like to accomplish just for you this year.  Check in with yourself every Monday.  And, tell me what your “Me Time” tip is – I will include it in future videos and blogs.  Good luck – 2012 is your year!

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Dec 232011
 

There are some topics on our message boards that pop up to surprise us, while others follow a pretty predictable cycle.

Every year, around the holidays, calls to our helpline and posts on our message boards indicate many family members notice the signs and symptoms of Alzheimer’s disease or advancing dementia. This is especially true of out-of-town family members who don’t see the person with dementia every day; they compare behaviors to previous times — and the difference may be startling.

The out-of-town family member may react by offering uninvited advice and opinions to family members who are dealing with dementia on a daily basis. And that’s when we see posts like this one:

“How dare she fly in here from thousands of miles away and say what our mother needs. I’m the one who does everything every day for her. Who does she think she is?!”

I think that it’s very natural to resent the advice of someone who is less aware of the daily needs of the person with Alzheimer’s and how much work it can take to meet those needs as the disease advances. But what’s harder to do is to accept that these family members are offering caregivers something very valuable – something that they cannot provide for themselves. They are offering perspective.

When you’re very close to something and looking at it, you see all the details. You can see the lines and veins in a leaf, for example, only when you’re close to it. You can see the effect of a slight breeze as it meets the leaf and moves it, even slightly. But what you can’t see, is the size of that leaf with respect to the whole tree — or a whole forest. For that perspective, you need some distance. And distance is something that daily caregiving just doesn’t allow.

So when the family gets together and someone offers opinions from a more distant viewpoint, it can help to try to see it as information that reflects a different perspective — one that can only be seen clearly when the viewer isn’t too close to the details. And sometimes, that view can even encourage caregivers to take a step back and incorporate additional resources they may not have considered before.

For the holidays,  a little perspective can be a wonderful gift.

Learn More

Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

Oct 212011
 
9798839_woman

As someone who works for the Alzheimer’s Association with support programs for caregivers, I decided to do a little research today on our Message Boards, where Alzheimer’s caregivers are able to communicate with each other about their concerns and get information and support from peers. For those who have been providing care to someone with Alzheimer’s disease for some time, the result will come as no surprise, but for those who are newer to caregiving, you can turn up a result that may make you curious.

If you go onto our message boards and search the Caregivers Forum with key words, you can pull about 30,000 posts containing the word “Alzheimer’s”, 14,000 that include the word “brain” and 10,000 that contain the word “neurologist.” No big surprises there, but here is the one that may surprise the newer caregivers: If you type in “UTI”, you will pull over 8,000 posts that are on 410 pages of our message boards.

UTIs, or urinary tract infections, can cause changes in someone with Alzheimer’s disease that you might never expect. The impact can be really profound. Some of the titles of the message board threads in which UTIs are mentioned tell the story well, including “Sudden decline,” “Yelling out and undressing in public” and “Manic episodes… WOW!”

Here is a sampling of some of the posts on the topic:

  • “For me, falling and hallucinations always mean check for UTI”
  • “Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
  • “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
  • “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
  • “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”

When UTIs are wreaking havoc with the family members of our Alzheimer’s caregivers, we sometimes see threads in which the caregivers are in a state of panic about the symptoms. And for good reason — the symptoms are powerful and can actually mimic the end of life for some people. These caregivers are used to a slow disease progression, and the UTI with no overt symptoms can make everyone involved act in ways that reflect their feeling that this situation is a life-threatening emergency. The good news is that, while the UTI does need to be treated right away, this is for the comfort of the patient and the family. UTIs do not cause permanent damage, and they respond quickly and successfully to treatment. And best of all, once the infection clears, the person returns back to their condition prior to the UTI.

That’s when the message board posts show caregivers breathing a deep sigh of relief and thanking their peers in the online community for their caring support — and for tipping them off to one of the oddest but most treatable components of Alzheimer’s disease.

Learn More

Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

Sep 272011
 

Dear Readers,

The recent results from a clinical trial of insulin for the treatment of AD has garnered a great deal of media attention. Before discussing the research, it is worth reviewing insulin’s role in the brain.

Insulin is critical for normal brain function, and abnormal insulin metabolism has been shown to contribute to the development of Alzheimer’s disease. Because patients with Alzheimer’s disease also exhibit decreased levels of insulin in the central nervous system, it has been hypothesized that raising these levels to normal might help maintain cognitive ability. Studies involving animals have suggested that insulin deficiency in the brain may possibly be a key factor in the progression of Alzheimer’s.

The trial, published online in the Archives of Neurology, is in fact, a randomized, double blind placebo controlled Phase II clinical trial which included 104 people. In the study, researchers at the University of Washington divided the subjects into three groups. One group received placebo, one received 20 international units of aerosolized insulin a day, and the third received 40 international units a day.

The average age of the participants was 72, and more than half were men. Sixty-four of them had amnestic mild cognitive impairment, and forty had mild to moderate Alzheimer’s disease. Amnestic MCI is thought to represent the pre-dementia phase of Alzheimer’s disease. Importantly, no serious treatment-related adverse events occurred during the study.For four months, 36 participants received 20 International Units (IUs) of insulin a day, 38 received 40 IUs a day, and 30 received a daily placebo, all delivered via nasal spray.

The researchers looked at the effect of the treatment on cognition, daily function, and for some participants, they measured biomarkers of cerebral glucose metabolism and cerebrospinal fluid. The primary measures were delayed story recall (how well participants recalled a story told to them immediately after and a short time later), and Dementia Severity Rating Scale (DSRS) scores of the participants (a multiple choice questionnaire that is filled in by caregivers).

For the primary measures, the results showed that compared to the placebo group: The participants who took 20 IUs of insulin a day showed improved delayed story recall, which was statistically significant. However, there was no improvement for the participants who took 40 IUs of insulin a day. The DSRS caregiver-rated functional ability was maintained for the insulin groups, while those on placebo worsened.
Although there appeared to be no change in cerebrospinal fluid biomarkers for insulin-treated participants as a group, exploratory analyses showed changes in memory and function were linked to changes in the beta-amyloid level, and in the tau protein to beta-amyloid ratio in cerebrospinal fluid.

A third group also had scans to assess their brains’ use of glucose. One hallmark of Alzheimer’s disease is reduced metabolism in the brain, which shows up on scans as less use of glucose, the fuel for brain cells. In this assessment, those getting insulin used more glucose in their brains while those receiving placebo used less.

Although the trial achieved statistical significance for its primary outcome measures, the observed effects were small in absolute terms, and thus their clinical significance is unclear. The trial was a small, single-site pilot study, which presents special challenges in the interpretation of results; clearly, a longer, larger, multisite trial is needed to confirm and extend the findings.

Intranasal Insulin Therapy for Alzheimer Disease and Amnestic Mild Cognitive Impairment: A Pilot Clinical Trial. Craft S, Baker LD, Montine TJ, Minoshima S, Watson GS, Claxton A, Arbuckle M, Callaghan M, Tsai E, Plymate SR, Green PS, Leverenz J, Cross D, Gerton B. Archives of Neurology. 2011 Sep 12.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Learn More

Aug 042011
 
alzheimer's and genetics

New guidelines have been developed for the field of Alzheimer’s disease. They were published in the June edition of Genetics in Medicine, and jointly issued by the American College of Medical Genetics and the National Society of Genetic Counselors.

The guidelines distinguish between genetic testing for dominantly inherited AD genes and that for the Alzheimer’s susceptibility gene, ApoE . The three early-onset familial AD genes — presenilin-1 (PS1), presenilin-2 (PS2) and amyloid precursor protein (APP) — confer almost 100 percent risk of developing AD, usually before the age of 60. Children of parents with the disease have a 50 percent chance of inheriting the gene, and may request pre-symptomatic testing. The guidelines lay out several strong recommendations for this type of predictive testing.

In contrast to dominantly inherited genes, testing for the AD susceptibility gene ApoE is a completely different case. The fourth gene, APOE-e4 on chromosome 19, is linked to a greater risk of susceptibility for developing late-onset Alzheimer’s. Late-onset AD is the more common form of the disease manifested after the age of 55 and generally associated with old age. APOE-e4 is a variant form of a gene that encodes the production of a protein called apolipoprotein E, which may play a role in repairing connections between brain cells. People with one copy of APOE-e4 have a greater risk of getting Alzheimer’s than people with other forms of the gene, and people with two copies of APOE-e4 have an even greater risk. Although carrying a copy of the ApoE4 risk allele increases the odds of getting AD by several fold, many people with the risk allele do not get the disease, while others without the allele do develop AD. The guidelines do not advocate for such testing.

The authors hope the guidelines will help to ensure that genetic testing for AD is performed in situations where it will provide useful information, and that patients and family remembers receive accurate information on the meaning of the results.

Goldman JS, Hahn SE, Catania JW, Larusse-Eckert S, Butson MB, Rumbaugh M, Strecker MN, Roberts JS, Burke W, Mayeux R, Bird T. Genetic counseling and testing for Alzheimer disease: Joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genet Med. 2011 Jun;13(6):597-605.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Learn More

Apr 212011
 

Dear Readers,

In a recent post this month, I focused on a study from Korea that examined whether the cardiovascular risk factors had similar effects on dementia risk in the Korean population as compared to Western populations. In this blog post, I discuss the latest data from Korea that examines the association of APOE e4 and depression to incident (development of ) dementia in elderly Koreans.

This study used data from the 10/66 International Dementia Research Program in Developing Countries. All persons aged 65 or older from two geographic areas in Gwangiu, South Korea, were asked to participate in this study with follow-up examinations occurring two years later.

Participants completed a variety of questionnaires that included: (1) 30 questions from Korean Geriatric Depression scale ( including supplemental items from the Geriatric Depression Scale, Beck Depression Inventory, and the Center for Epidemiologic Studies Depression Scale; (2) a review of alcohol history, physical activity, disability, vascular risk factors and measured obesity (BMI>25 kg/m2); (3) cognitive assessment testing (Mini-mental state examination, the Clinical dementia rating (CDR) scale, Instrument Activities of Daily living scale); and (4) APOE e4 genotyping.

A diagnosis of dementia was determined using standard criteria for dementia, Alzheimer’s Disease (AD) and vascular dementia (VaD) by committee. The diagnosis of clinical depression was determined by utilizing validated cutoff scores (against psychiatric diagnoses specific for the Korean population).

Of the initial 732 participants, 518 (83 percent) completed all evaluations at follow-up with 45 participants developing dementia (34 with AD, seven with VaD and four with “other dementia”) over a two-year period. APOE e4 and baseline depression were significantly associated with the incident dementia. When other factors were added to the models, the association between APOE 4 and dementia were unchanged, whereas the association of depression and dementia was no longer significant. Persons with a +APOE e4 genotype / + depression had a nine- fold increased risk of developing dementia compared to those with -APOE e4 genotype/- depression. When other factors were added to this model, the associations were weakened but still remained significant. Gender differences were noted, in that, men had approximately a four times higher risk of developing dementia if they were classified as +APOE e4 /+depression compared to + APOE e4/+ depression women.

This study adds to the few population based studies from Asia that have examined the association of depression and APOE e4 to the development of dementia. The gender differences noted for risk of dementia are interesting, yet it is unclear as to the possible biological mechanisms underlying these findings. Nevertheless, this study supports findings from Western studies regarding the role of depression and APOEe4 to increased risk of dementia, and suggests that perhaps treating a potentially modifiable risk factor such as depression could modify this relationship and delay the development of dementia.

Here are three articles you can refer to, if you wish to learn about this particular study or the latest research on APOE4, depression and dementia in the Korean population:

Thanks for reading.

Neelum T. Aggarwal, M.D.
Steering Committee Member, ADCS
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Apr 212011
 

MRI Brain scanHigh-resolution magnetic resonance (MR) imaging studies have identified characteristic changes in brain structure — thinning of key cortical regions and reduced volume of structures such as the hippocampus — in persons with mild cognitive impairment, in individuals known to carry gene mutations that directly cause Alzheimer’s disease, and in diagnosed Alzheimer’s patients.

The current study, published in the Annals of Neurology, involved 87 cognitively normal older individuals and 32 patients diagnosed with mild Alzheimer’s (matched for age, gender and education) who had enrolled in the long-term Harvard Aging Brain Study. Participants underwent both high-resolution MR imaging of brain structure and PET scanning with PiB to detect amyloid plaques.

The results showed that those cognitively normal individuals who had amyloid plaques also had structural changes similar to but less pronounced than the neurodegenerative changes seen in the symptomatic patients. Structural changes were most evident in areas comprising what is called the default network, which is known to be affected early in the course of Alzheimer’s disease.

The study was well conducted, well controlled and used the latest techniques in brain imaging. This paper provides further evidence that amyloid deposition is occurring in the brain decades before the dementia stage begins, and in fact, even before cognitive impairment develops. It also supports the idea that the mechanism by which cognitive impairment and dementia arise is due to atrophy, or shrinkage, of the brain in selected areas as a consequence of beta-amyloid deposition.

*Becker et al, Beta-amyloid associated coritcal thinning in clinically normal elderly. Annals of Neurology, March 2011.

Michael S. Rafii, M.D., Ph.D.
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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Mar 182011
 

Last month, researchers Francisco Lopera and colleagues reported in the journal Lancet Neurology that they were able to capture a clear decline in cognition starting in people’s early 30s in the largest-known population with autosomal-dominant (inherited) Alzheimer’s disease. They define an earlier disease stage prior to what is called pre-MCI, in effect pushing the line of detectability back toward younger ages by some four years.

Two other papers go in the same direction. Last year in the journal Brain, Mario Parra and colleagues published a new test that appears to detect a specific visual memory deficit perhaps even earlier, at ages when mutation carriers perform as well as controls on standard neuropsychometric tests. And in last December’s Annals of Neurology, Yakeel Quiroz and colleagues report the first of what is expected to be a wave of preclinical brain imaging findings. Carriers in their thirties, while still performing the memory test at hand as well as non-carriers, push their hippocampus harder to achieve that parity.

Together, these three papers push back the preclinical phase of Alzheimer’s that is detected by neuropsychology and imaging. They characterize the 20 to 15 years prior to symptoms of dementia.

Each of the previous familial Alzheimer’s disease studies was small. In this paper by Lopera and colleagues, the Colombian scientists retrospectively analyzed descendents of the largest-known cohort of autosomal-dominant Alzheimer’s, including 1,784 patients age 17 to 70 who came to Lopera for treatment and research between 1995 and 2010. This study is by far the biggest study of its kind. Four hundred forty-nine people carried the mutation. Four hundred ninety-nine non-carriers served to establish normal parameters on the battery of cognitive tests that the scientists administered to the participants at follow-ups every other year where possible. The studies are helping us get a better sense of the continuum of Alzheimer’s disease, from its asymptomatic stage into the mild cognitive impairment/prodromal stage, followed by the well characterized mild, moderate and severe dementia stage.

Michael S. Rafii, M.D., Ph.D.
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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