The focus of this attention was an 85-year-old retired college professor, a seemingly healthy long-term patient of Lipman’s. In all the years she had been seeing him for routine examinations and an occasional infection, she had provided him with few or no clues that she might be slowly developing Alzheimer’s, a disorder that affects 5.5 million Americans.

For each of the incidents that troubled her daughter, she had an explanation: “If you had eight grandchildren, you’d get them mixed up, too.” “The reason I showed up at the wrong house for your birthday was that it was dark and the street signs were hard to read.” “The pot boiled over and ruined the kitchen floor because the timer didn’t ring.”

Her physical exam was completely normal, as it always had been, except that she asked what her blood pressure was on several occasions during and after the exam. She could name only 11 animals over a 60-second time span. (With normal recall, she should have been able to name at least 14.) As part of a mini-cognitive assessment, she could recall only one of three unrelated nouns mentioned to her. Then, having been asked to draw a clock with the hands at 11:10, she drew it wrong, indicating 10 minutes before 11.

Minding the mimics

Lipman answered the daughter’s question with a qualified “yes.” But to be more certain, he had to rule out several potentially reversible Alzheimer look-alikes.

Low levels of Vitamin B₁₂, or folate, or thyroid hormone could produce the cognitive problems commonly seen with Alzheimer’s disease, but tests showed her levels were normal. She didn’t have the urinary incontinence and gait abnormalities seen in normal-pressure hydrocephalus. Her normal blood pressure, absence of obvious heart disease and lack of a smoking history made multiple mini-strokes unlikely. She wasn’t on any mind-clouding sleep medication, tranquilizers or antihistamine-like drugs. And she had no symptoms of depression. Therefore, she fulfilled the criteria for Alzheimer’s disease, which accounts for up to 80 percent of cases of dementia among the elderly.

The greatest risk factor for dementia is age. By the eighth decade of life, the prevalence of dementia is about 5 percent, increasing to 37 percent in nonagenarians. But recent research has challenged the notion that dementia is a disease of only the very old. A study in the journal BMJ in January clearly showed that cognitive decline in those destined to develop Alzheimer’s disease can begin as early as the fifth decade of life.

Prevention and treatment

Definitive steps to prevent Alzheimer’s disease have yet to be identified. But since Type 2 diabetes and many of the risk factors for heart disease have been linked to the eventual development of dementia, it makes sense to eat right and stay fit. Intellectual activities and social contacts probably don’t do much good, though they may be helpful in other ways.

What intrigued Lipman most about his patient was that her dementia, which must have been developing over a few years, was a complete surprise to him. As is common in people with Alzheimer’s, she had not complained about any cognitive problems. More often than not, it’s someone close — a son, daughter or spouse — who notices something is wrong and seeks a diagnosis. In contrast, people with non-
Alzheimer’s age-related memory loss constantly complain about forgetting names, but their cognitive and other reasoning abilities remain intact.

With the diagnosis of the retired professor on firm ground following a confirmatory consultation with a local neuropsychiatrist, combined treatment with donepezil (Aricept and generic) and memantine (Namenda) was started. Only time will tell if the drugs will slow the progression of the disease.

http://www.washingtonpost.com/national/health-science/signs-of-alzheimers-but-not-other-dementias-are-often-seen-first-by-relatives/2012/05/21/gIQACv5yfU_story.html

The “win” couldn’t have come at a better time, as the government is crafting the first-ever national plan to address Alzheimer’s disease. The plan includes long-overdue attention to young-onset Alzheimer’s disease, a rare form of the brain disorder that affects people under age 65, even those in their 30s and 40s.

The nation’s view of Summitt as someone more than a sport legend began last May when the Hall-of-Famer, at the age of 58, announced that she had been diagnosed with early-onset dementia of the Alzheimer’s type (also called young-onset Alzheimer’s disease) and again this past week not once, but twice. First, when the University of Tennessee announced that Summitt would be stepping down from her 38-year reign as head coach of the Lady Vols to become head coach emeritus, and second, when President Obama disclosed that he will be awarding her the Presidential Medal of Freedom later this year.

The president was right on the mark as he alluded to Summitt’s readiness “to speak so openly and courageously about her battle with Alzheimer’s disease.” Her candor is akin to moving the disease from the bleachers to courtside.

Summitt’s son, Tyler, in a heartfelt guest column in the spring 2012 issue of care ADvantage, a caregiver magazine published by the Alzheimer’s Foundation of America (AFA), noted that the first month post-diagnosis “… was sad … However, once we came to terms with it, we picked ourselves up and developed a game plan.”

A huge part of their proactive agenda is working on the coach’s mental, physical and spiritual health. An even huger part is being public about her illness.

“We knew that God had something bigger in store for my mom than just coaching basketball,” wrote the 21-year-old college student, who is assisting his mother with the newly-formed Pat Summitt Foundation.

It can take a lot to be candid about the disease, whether a celebrity or not. And especially when the disease strikes at a younger age; young-onset Alzheimer’s disease currently affects about a half million of the estimated 5.1 million Americans with Alzheimer’s disease, and it is often less likely to be properly diagnosed.

Stigma and denial continue to surround the brain disorder, stifling the willingness of people to admit to warning signs and to discuss concerns with their families and friends, let alone their doctors. Research shows general practitioners miss about 50 percent of all cases of dementia.

Reversing this negativity is crucial to quality of life. Available medications, lifestyle changes, caregiver support services and the ability to do long-term planning are lifelines for coping with this terminal disease. And they can only kick in when a family acknowledges, confirms and confronts the horrific beast before them.

Summitt’s emergence as a role model, particularly for the young-onset population, comes at a critical time for the cause. The U.S. Department of Health and Human Services (HHS) is working toward a mid-May release of its national Alzheimer’s plan, which includes the goal of preventing and effectively treating Alzheimer’s disease by 2025. This past week, the HHS-appointed Advisory Council on Research, Care and Services approved comprehensive recommendations that it hopes will be folded into the historic plan.

Worthy of note, the recommendations position young-onset Alzheimer’s disease front and center. For example, in suggesting that HHS kick off a nationwide public awareness campaign to increase awareness and to promote early detection of Alzheimer’s disease, the council emphasizes that the campaign should include “specific efforts in diverse communities and populations, including younger-onset individuals and persons with intellectual disabilities.”

Further, recommendations include opening the floodgates so that younger individuals are not aged out of federal benefits for Americans 65-plus. Among them, it calls for special and emerging populations of people with Alzheimer’s disease, including younger people and people with developmental disabilities such as Down syndrome, to have access to long-term support services, and that these supports are tailored accordingly. It further calls for expanding Older Americans Title III services, such as respite care and adult day services, to the young-onset population.

As disheartening as it was to hear that Summitt had been diagnosed, just like it is for each and every person — well-known or not — who faces the same fate, the silver lining in the cloud appears when greater good can result.

by

Eric J. Hall

CEO, Alzheimer’s Foundation of America

http://www.huffingtonpost.com/eric-j-hall/pat-summitt-alzheimers-_b_1441114.html

A new study supports the theory that daily physical exercise may dramatically reduce the risk of Alzheimer’s disease, even in people over the age of 80.

The study of 716 people, with an average age of 82, found that those who were the least physically active were more than twice as likely to develop Alzheimer’s than those who were the most active.

The study differed from others in that it didn’t intervene in participants’ lives with exercise programs or ask them to self-report their activities over a long period of time; rather, it looked at daily activity levels of elderly people, suggesting that even if people hadn’t been active their entire lives, leading a relatively active life in old age could have benefits in staving off the disease.

In addition, the intensity level of activity seemed to produce an effect as well—those who did the least intense activities were almost three times as likely to develop Alzheimer’s as those who did the most intense exercises.

For the study, participants wore a wrist monitor called an actigraph continuously for 10 days.  The actigraph recorded all exercise and non-exercise in 15 second increments.  The participants were also given annual tests that measured memory and thinking abilities over a period of four years.  During the study, 71 of the participants developed Alzheimer’s disease.  All of them agreed to donate their brains for further research after they died.

“Participants wore the actigraph for 24 hours a day, so it measured all the movements made throughout the day,” study author Dr. Aron Buchman, a neuroscientist at the Rush Alzheimer’s Disease Center, Rush University Medical Center in Chicago, told FoxNews.com.  “Every 15 seconds, it would record activity on a little chip.  If you weren’t moving, it would record a zero.”

Buchman added the device could not distinguish between different types of activity, such as a person playing basketball versus a person playing cards—however, if the actigraph continuously recorded movement over 30 minutes or an hour, it suggested the person was doing a more intense exercise.

“The important thing is, since we measured all types of activity, it allowed an interesting perspective that even among older people who may not be able to participate in a formal exercise program, a more active lifestyle—even it’s just washing the dishes or walking around inside—is better for you than sitting,” Buchman said.

Buchman said it wasn’t necessary to run a half mile to get benefits.

“Increasing activity level by 10 to 15 percent could be good as well,” he said.

Prior research has indicated that physical activity can potentially reverse memory loss and increase brain volume, reducing the damaging effects of aging.  Buchman said participating in cognitive and social activities have also shown similar benefits.

“People who read more, go to church, play Bingo or do crossword puzzles, rather than just sit and vegetate, will derive some benefit,” Buchman said.  “The sum total of all types of activities is not only beneficial for older people, but could also be beneficial for the health care system if they can tailor programs to address the issue of older people who have health issues and may not be able to participate in a formal health care program.”

The study was published in the online issue of Neurology.

The report calls for “immediate action” by all stakeholders at international, national, regional and local levels to: promote a dementia-friendly society globally; make dementia a national public health and social care priority worldwide; improve professional and public attitudes and understanding of dementia; invest in health and social systems to improve care and services for people with dementia and their caregivers; and increase the priority given to dementia in the public health research agenda.

With 35.6 million people worldwide living with dementia in 2010, the report estimates that the costs of dementia are (U.S.) $604 billion per year. It notes that “the costs are increasing even more quickly than the prevalence” of the disease.

We were in a beautifully restored historic church in Raleigh, a perfect setting for this particular couple. Her dress, hair and jewelry matched the church magically. It was a lovely, crisp fall afternoon. They purposely selected a fall Saturday when the Wolfpack had a by-week.

Almost everything was perfect for her perfect day.

My friend’s mother sat in the front row, a smile from ear to ear. She was smiling, laughing, waving with a childlike joy and innocence.

It broke my heart.

This was in 2008, and at that point, my friend’s dear mother Nancy Humberstone’s younger-onset Alzheimer’s disease had progressed significantly. It was full-blown Alzheimer’s—in all its cruel and heartless glory.

Like her husband, Nancy, too, beamed proudly at her daughter in her beautiful white gown.

She told us how beautiful we all looked as we got ready, as brides and their bridesmaids tend to do before the big day.

Sadly, I’m just not sure if she knew who any of us were, even the blushing bride or her other daughter, the maid of honor. I pray she did. If anything I hope she captured the joy, albeit somewhat bittersweet, in her two very brave daughters’ eyes on my friend’s most special day.

Nancy Humberstone, a cancer survivor, having survived a years-long and very strenuous bout with Non-Hodgkin’s Lymphoma, was diagnosed with younger-onset Alzheimer’s disease at the age of 58.

It began subtly, I remember her daughter telling me, with slight changes to her personality and behavior. Then, almost overnight, the disease took hold of her. She had good days and bad days, but as the disease progressed, the good days became fewer and farther between.

On Jan. 7, Nancy Humberstone, 65, passed away, from complications from Alzheimer’s disease.

Who will my friend Priscilla call when her and her husband have their first child—when he or she is fussy and only the woman who raised you knows the secret to soothe the child?

If your life hasn’t been touched by Alzheimer’s disease, consider yourself incredibly lucky. It’s estimated that 33 million people worldwide suffer from the disease—5.1 million of them are Americans.

My grandmother was diagnosed with dementia and Alzheimer’s before she passed away, but she was 86. She lived a hard but full life. I remember the exact moment less than two months before she died when my grandmother actually recognized me and knew exactly who I was. It was fleeting, but at least I have that to hold on to.

Alzheimer’s, however, is no longer your grandparents’ disease.

And there is no cure.

My friend’s sister began a nonprofit a few years ago, To Remember, to promote education, research and funding for an Alzheimer’s cure.

It’s ironic, isn’t it? With everything going on in the complex world of modern science, the medical community is searching for a cure to do just that—to remember.

Caroline Curran is a staff writer and columnist at The Brunswick Beacon. Reach her at 754-6890 or by email at ccurran@brunswickbeacon.com.

http://www.brunswickbeacon.com/content/remember-those-suffering-alzheimer%E2%80%99s-disease-and-families-who-love-them

By Caroline Curran, ReporterTuesday, January 17, 2012 at 5:25 pm (Updated: January 17, 5:27 pm)

Since then, there have been remarkable strides forward in the diagnosis, understanding and care for those with Alzheimer’s disease and other forms of memory loss. Reflecting on the progress we’ve made in the last 30 years helps us to prioritize new advances in the decades ahead.

Diagnosis, Treatment and Education

Every 69 seconds, someone develops Alzheimer’s disease and one out of every eight seniors over the age of 65 has the disease. Yet 30 years ago, no one knew its name. If you search the New York Times archives from 1850 through 1977 for “Alzheimer’s disease,” only one story refers to the disease, although it was first diagnosed back in 1907.

The Alzheimer’s Association, whose resources are invaluable to so many today, was not even founded until 1980, and it was not until 1982 that Ronald Reagan declared an official “Alzheimer’s Awareness” week. Many people regarded the symptoms of confusion and memory loss as just a reality of getting older. The result was that little attention was given to treatment, diagnosis, and more importantly, care and caregivers.

While a definitive cure for Alzheimer’s is still elusive, there are five FDA-approved drug treatments that help relieve the symptoms of the disease. These have all been developed in the past few decades and there are numerous new therapies in the research pipeline.

Care Settings

Prior to the 1970s, resources and services for people with memory loss were virtually non-existent, and care was given either at home or in nursing homes. Fortunately, a major shift occurred in the 1980s when the institutionalized medical model of care provided in nursing homes transitioned to the resident-centered social model provided in assisted living communities.

It was during this period in time that assisted living pioneers Paul and Terry Klaassen, founders of Sunrise Senior Living, designed the type of care and services that would always put the resident first, whether or not they have memory loss. This approach not only champions quality of life, but also honors the residents’ wishes and promotes identity, independence and dignity.

As the assisted living industry grew, dedicated wings or free-standing buildings were built specially for residents with memory impairment. These homelike neighborhoods provided a secure, non-restricting environment and promoted a sense of community. Architects then began to focus on the design elements which give residents with memory loss a sense of orientation through built-in environmental cues that helped them find their way and reduce feelings of insecurity. Design innovations included automatic sensor lights and contrasting colors in bathrooms, tableware designed to be bright and contrasting — all of which further promote dignity and independence.

By the early 2000s, a few assisted living companies identified a need for specialized programs and services specifically designed for residents with Mild Cognitive Impairment (MCI) or early stages of Alzheimer’s disease. These programs were designed to assist seniors with early signs of memory loss to engage in activities that promote cognitive stimulation, social engagement, mutual support and stress reduction with a goal of delaying memory loss. Not until recently did studies suggest that lifelong learning, mental and physical exercise, continuing social engagement, stress reduction and proper nutrition may be important factors in promoting cognitive vitality.

Care Provision

Thirty years ago, there was little consensus about how best to help those who were disoriented and seemed to live in a different time and place because of Alzheimer’s or other forms of memory loss. That changed in 1982, when internationally renowned social worker Naomi Feil published her seminal work, “Validation: The Feil Method, “which introduced caregivers to an empathetic way of communicating with disoriented seniors. Today, thousands of professional caregivers are trained to use validation techniques, through which they are able to tune into the inner reality of the person with dementia. This method helps build trust and restore the person’s dignity.

Activities in memory care have also transitioned away from the large group, one-size-fits-all approach to more intimate small groups that focus on shared interests and promoting a sense of purpose and belonging. Most care also now centers around social engagement with well-designed activities to increase quality of life.

The Future

As progressive as the last 30 years has been to improve care for those with Alzheimer’s and other forms of memory loss, the future looks even more promising, especially in the area of technology. The safety-oriented devices such as motion sensor alerting and GPS shoes will continue to proliferate and enable greater independence. Scientists are also testing brain imaging tools and blood tests that may allow for earlier interventions. Computer-based brain fitness products and remote communication with family members are also promising to flourish and help keep those with memory loss connected socially.

Everyone is hopeful that this generation will be the one where a cure is found. While the search continues, there will be even more emphasis on prevention and controlling contributing risk factors. Until then, one of the most important advances we can make is to continue educating, training and supporting everyone who is touched by Alzheimer’s disease and other forms of memory loss.

By Rita Altman, R.N.

http://www.huffingtonpost.com/rita-altman-rn/alzheimers-research_b_1118556.html

Visits to stores near her Frankford home can become a dizzying odyssey for Kathy Murray, even though she’s made the trips countless times. Trying to figure out devices such as clocks and remote controls can sometimes feel like she’s tackling Sudoku. And remembering things like appointments are next to impossible without visual — and often multiple — reminders.

Murray has Alzheimer’s disease, specifically the less common form of younger-onset Alzheimer’s. She’s only 59, but for much of the past decade, she has lived with symptoms of the disease, and they have worsened over time.

To ensure that she didn’t forget a scheduled interview with a reporter, she needed an alarm set with the time of the interview. It was alongside a post-it note that explained that the interview was about her condition.

“If you ask me what I did for a living, I have to have my résumé in front of me and I can tell you that it was banking. I have to use post-it notes and reminders or many times I won’t remember,” said Murray, a former senior vice president for M&T Bank, who retired in 2005 in part because she was experiencing symptoms that made it difficult to do her job. Shortly thereafter, she was diagnosed with younger-onset Alzheimer’s.

About 5 percent of the estimated 5.3 million Americans who have Alzheimer’s have the younger-onset (also known as early-onset) version, in which symptoms are evident before age 65. People are diagnosed with it in their 30s, 40s, 50s or early 60s.

Younger-onset Alzheimer’s comes with its own unique set of challenges for families. People often are diagnosed while they are still in the middle of building financial security. They may be the only breadwinner in the family, or may have young children unable to assume the role of caregiver. Their spouse may suddenly have to consider updating a living will and long-term care.

“Depending on the person who has the disease, they may have to adjust the way they work or they may have to stop working,” said Claire Day, vice president of constituent services for the Delaware Valley Chapter of the Alzheimer’s Association, a national research and patient advocacy organization.

Awareness about the disease is growing both locally and nationally. Pat Summitt, the successful women’s basketball coach at the University of Tennessee, announced last month that she had been diagnosed with younger-onset Alzheimer’s disease. In May, Christiana Care Health System established the Swank Memory Care Center in Wilmington, the first hospital outpatient center in Delaware to provide Alzheimer’s screening services. And last year, the federal Social Security Administration added younger-onset Alzheimer’s disease to its list of conditions that can give people expedited access to Social Security disability insurance.

“Before the law was changed, there was a two-year waiting period to get those benefits,” Day said. “But a lot can happen in two years so that can mean the difference in helping people make the most of their time left.”

Complications

On average, people die about eight to 10 years after they have been diagnosed with Alzheimer’s disease.

People succumb to complications of the disease, such as pneumonia, pulmonary embolisms or even falls, making Alzheimer’s the fifth-leading cause of death in the United States, according to the federal National Center for Health Statistics.

The disease is caused by a number of different single-gene mutations that cause abnormal proteins to form in the brain and result in a shrinking of brain tissue. Brain scans can be used to assist in diagnosis, said Dr. Lanny Edelsohn, a neurologist with Christiana Care Neurology Specialists.

“We’re also looking for a history of a progressive decline in intellectual functioning that is not explained by a psychiatric disease,” said Edelsohn, who has been a neurologist for 38 years.

The symptoms of early-onset are identical to the more common version, and include memory loss, lapses in judgment and difficulty in organizing and expressing thoughts.

Summitt, the University of the Tennessee coach, who at 59 is the same age as Murray, said she suspected her forgetfulness was a side effect of a drug until doctors diagnosed her with the disease. When she worked as a bank officer, Murray said, she had trouble retaining information related to her responsibilities, which included retail products, investments and regulatory affairs.

“I was always very articulate and could keep track of any issues that arose … before the disease struck,” she said. “But afterward, I couldn’t even comprehend simple information. I would hear words that people were saying but I couldn’t understand what they were trying to tell me. In order for me to communicate, I’d have to have my secretary transcribe messages because I could only understand it by visually seeing it.”

Tough on spouses

The diagnosis can be traumatic for spouses, too.

Joe McCaffrey’s wife, Jody, died last December at age 75 from younger-onset Alzheimer’s — she was diagnosed with it 12 years ago. As the disease progressed, it was difficult for McCaffrey to observe his wife stop cooking — an activity she previously cherished — and avoid interacting with her friends and family members.

McCaffrey, 79 of Pike Creek, said he was frustrated trying to find an Alzheimer’s support group that he could relate with.

“It’s harder for loved ones because on any given day I didn’t know if she did understand or did not understand what I was saying,” McCaffrey said. “The people who were in the support groups were much older adults with spouses who had the disease or they were younger adults caring for a mother or father. I didn’t find a good chemistry in a support group right away.”

Like McCaffrey, Murray’s husband, Robert, said he has noticed his wife does not interact with friends as much, largely because of her fear of forgetfulness.

“You see the withdrawal,” he said. “This disease caused someone who was very outgoing and very outspoken to not care to socialize with people at all. She wants to be in her own zone of people that she’s familiar with day in and day out.”

Although Kathy used to frequently fly to destinations alone, now she won’t travel more than 15 miles from her home for fear of getting lost. Robert said he has it easier than other caregivers of people with early-onset Alzheimer’s disease because he, too, is retired. After his wife’s diagnosis, he began assuming more of the family responsibilities that she handled, such as the family’s finances.

“We have moved up a lot of our plans as far as retirement goes. We have tried to get things done that maybe we would not have done right away, like taking vacations and going to baseball spring training,” said Robert Murray, who along with his wife is an avid baseball fan.

Those with a strong support network of family and friends cope best, the Alzheimer’s Association said. With their spouses, the diagnosed may have to discuss outside caregiver services and look into government assistance programs, such as Social Security disability benefits. Before they are unable to communicate with their children any more, they may want to record their thoughts and advice for them in writing or audio or video.

Workwise, they may need to discuss new arrangements, such as finding out from their human resources department about which accommodations are available for them to be able to continue doing their jobs. They may begin using memory aids to help them organize. No precedent has been set for dealing with Alzheimer’s in the workplace.

“The American Disabilities Act has a lot of great programs for people with physical disabilities and we know how to amend the work environment for that, but this is uncharted territory for us because all of a sudden the company is faced with making a decision based on whether they can still do their job,” Day said. “We’ve seen companies that have made the transition absolutely phenomenally. But for some people, like a doctor or an attorney or pilot, there’s no question that they have to stop working if they are diagnosed with the disease.”

Some drugs helpful

Maladies such as diabetes and heart disease can increase the risk of death from the disease. Whether a lifestyle of healthy eating and frequent exercise can slow the disease’s progression is up for debate, neurologist Edelsohn said.

No medicines on the market can slow or reverse the progress of the disease. But certain drugs can boost levels of the neurotransmitter in the brain that is needed to form memories, Edelsohn said.

“It is helping the functioning of patients with Alzheimer’s,” he said.

No cure for Alzheimer’s disease exists. But because it has genetic components, researchers are hoping to gain insight into the biological changes that occur in certain families prone to the disease. That type of research is supported by the federal National Institute of Aging and is known as the “Dominantly Inherited Alzheimer Network.”

Involved in the DIAN research is Dr. Reisa A. Sperling, a neurologist and director of clinical research at the Center for Alzheimer’s Research and Treatment at Brigham and Women’s Hospital and at Harvard Medical School.

“Since we know the cause is a gene, we think that if we can interfere with the production [of the abnormal proteins], we will stop progression,” said Sperling, also a member of the Dana Alliance for Brain Initiatives (DABI), a nonprofit organization of neuroscientists that raises awareness on brain research.

Kathy Murray does not expect to see a cure for younger-onset Alzheimer’s in her lifetime.

“When I was at the top of my career in banking, I felt like myself and my management team could hit grand slams, and now that I’m no longer working and Alzheimer’s has taken its toll on me, I can see the decline,” she said. “But I still intend to get in the batter’s box. I still intend to get up every day and get going because I don’t want Alzheimer’s to define who I am as an individual.”

Written by

HIRAN RATNAYAKE
The News Journal

http://www.delawareonline.com/article/20110927/HEALTH/109270311/Early-onset-Alzheimer-s-poses-unique-problems?odyssey=mod|newswell|text|Home|s

But that simple pleasure is no longer possible after dad Mike was struck with Alzheimer’s disease at 45 – the same age as, for example, DJ Chris Evans and model Cindy Crawford now.

Mike’s daughters Ciana, 16, and Chrissi, 14, are distressed by the change in their fun-loving dad, who adored sports and bands such as The Cure and Echo And The Bunnymen.

Wife Liz has had to give up her job to nurse the man she expected to grow old with, as his mind fails.

Liz, 46, a former airline marketing analyst, says: “As time goes on and we lose more of his personality, we’ve learnt to cherish times when the old Mike shines through.”

Liz first noticed a change in her husband four years ago, when the family were living in Vietnam.

Maths whizz Mike, now 49, was working as an analyst for a multi-national insurance company and the family had a dream lifestyle, soaking up sun in exotic locations.

But despite the idyllic setting, life at home was becoming strained.

Liz says: “The first thing I noticed was that Mike seemed to have lost enthusiasm for everything. I became the one who arranged days out, then whenever we did go anywhere he’d be quiet and withdrawn. Even though the changes were subtle to begin with, I knew something wasn’t right.

“It was a difficult time for us all. Mike had always been such a driving force in our family life, so it was frustrating to see him withdraw and not have a clue why. I wanted to shake him to make him snap out of it. I’d lose my temper and we’d argue.

“I didn’t realise he couldn’t just snap out of it, that this was the first sign of the disease that would rule our lives.”

As Mike deteriorated, other people began to notice.

Liz says: “He became forgetful and would lose things, the classic symptoms associated with Alzheimer’s. But the disease is so much more than memory loss.

“He also lost his job, which was a huge blow. Though they called it a redundancy, I wonder if they’d noticed he was struggling.”

Slowly, Liz began to realise there was something horribly familiar about what was happening to her husband, who used to play hockey, football, cricket and tennis.

She says: “Mike’s mum suffered from Alzheimer’s and I became convinced Mike had it too. At first I tried to convince myself that I must be wrong, as Mike was only 45, but deep down I knew.

Close … Mike with his girls and wife Liz

“Though I’d never met her, Mike had told me his mum deteriorated quickly and died at the age of just 44. I didn’t want to believe I’d lose my husband in the same way. The girls were still only young but they had noticed the changes in their dad too. They’d seen their dad go from being a loving, caring family man to becoming distant and withdrawn, like a stranger.

“It broke my heart when they asked one day, ‘Mum, do you think Daddy’s got what his mum had?’ I just had to be honest and say it looked as though he did.”

After Mike lost his job, the family decided to return to the UK. Liz admits: “It was a huge relief. Though it wasn’t the reason we came home, I knew in my heart that he’d need specialist treatment.” But Mike was in denial. Although Liz begged him to see a doctor, he refused and instead spent months searching for a new job.

Liz says: “Though we never said the word Alzheimer’s, I think he knew deep down that’s what I was thinking. He was just scared. Finally, I told him we couldn’t go on the way we were. I told him he needed to get help, for my sanity if nothing else. Eventually he agreed.”

Mike’s GP referred him to a specialist who confirmed the worst. Liz says: “Despite our suspicions, nothing can prepare you for the moment you hear you will lose the man you love, the man you’d chat to in our old age, to a disease as cruel as this one. I was crushed.

“But I was also strangely calm. It was a relief to know he would finally get the treatment he needed. We no longer had to live in limbo.

“The girls handled it brilliantly. We’ve never talked about what will happen to their dad, but I will always answer their questions. I don’t always know the answers – it’s an uncertain future and that’s scary – but we’re facing it together.” Now the family live each day at a time, trying to help Mike.

Liz says: “He can be forgetful and disorientated. Sometimes he won’t know how to make his breakfast or find a spoon, so daily life can get very difficult.

“Mike loved music and is a massive fan of The Cure, Joy Division and Echo And The Bunnymen. He has a huge vinyl collection and I’m going to restore his old record player so he can listen to them.

“Music can take you back to a place and time you associate with it, so I’m hoping it will help us cling to the old Mike a bit longer.” Ciana is also making a book of memories to help her dad remember.

Liz continues: “We’ve got wonderful photos of our time in Vietnam and when we lived in Hong Kong when the girls were small. It’s great for Mike and Ciana to go through them together, remembering the happy times. One day it may be the only way to unlock his memories.”

Ciana says: “When my friends don’t understand Alzheimer’s, I describe it as being like a giant jigsaw puzzle and each day you lose one of the pieces. You know you’re never going to find it again and the pieces will get more jumbled and never fit together. It’s horrible.”

Chrissi adds: “The worst thing is seeing him deteriorate every day. When I see Dad’s happy, I’m happy. But when he has a bad day, it’s really upsetting.”

Whatever the future holds, Liz says: “The girls know they’ll always be in Mike’s heart – and he will always be Dad to them.

“We’re just trying to keep the bits together as long as we can, so they can cling on to the dad we thought would always be there for them.”

Researchers led by Dr. Paul Thompson, a UCLA professor of neurology, conducted brain scans on 398 young, healthy people ages 20 to 30. Those participants who carried a particular gene mutation that is known to raise the risk of Alzheimer’s — linked to the CLU gene — had unique characteristics in white matter (the bundles of nerve cells) in multiple brain regions, including in some areas known to become damaged in Alzheimer’s disease. The findings suggest that changes in myelin, the substance that protects nerve cells, may be a sign of increased risk of developing the disease later in life.

“Alzheimer’s has traditionally been considered a disease marked by neuronal cell loss and widespread gray matter atrophy,” Thompson said in a news release. “But degeneration of myelin in white matter fiber pathways is more and more being considered a key disease component and another possible pathway to the disease, and this discovery supports that.”

People who have this particular mutation in the CLU — which is common — aren’t doomed to develop Alzheimer’s disease, the authors noted. And young people who have these changes in white matter are not cognitively impaired. But knowledge about this genetic risk could be used to help prevent the disease later in life, the authors said.

The study was published online last week in the Journal of Neuroscience.

By Shari Roan, Los Angeles Times / For the Booster Shots blog

http://www.latimes.com/health/boostershots/la-heb-alzheimers-20110512,0,1944348.story