My mother stuck her head into the basement office of the house I shared with my parents in St. Catharines, Ont. "Don't tell your father," she said timidly, "but I can't remember how to use the washing machine."
I was stunned. Until then, my mom, Kay Warwick, had been a sharp-witted woman, who at the age of 78 could pull information on people and places from her mental file at will. It was my father, Ken, 77, who had the poor memory.
Like many other people whose loved ones show early signs of dementia, I ignored the incident; maybe my mom was just tired or overly stressed. While I had heard of Alzheimer's disease – and even knew of a few people who had it – I didn't connect it to my mom's odd behaviour. But as her symptoms worsened over the next few years, I couldn't ignore the problem anymore. She was diagnosed with Alzheimer's disease in late 1995. I helped my dad care for her until her death in 1999. Then my dad fell ill with Alzheimer's. I'm now caring for him at home.
In the years between the two diagnoses, there has been a sea change in knowledge about Alzheimer's disease. Today, my dad has access to treatments my mom never had – drugs that may stall the progress of the disease. We now know more about what might trigger Alzheimer's disease and how to prevent it. And this is just the beginning: as scientists work to develop vaccines and other novel therapies that attack the disease process, the next few years promise to be even more productive. "We're about halfway through the most exciting decade in the history of the treatment of this disease," says Dr. Jack Diamond, scientific director for the Alzheimer Society of Canada.
What is Alzheimer's disease?
Alzheimer's disease, the most common form of dementia, is characterized by the buildup in the brain of "plaques" containing a protein called beta-amyloid, and by twisted fibers, or "tangles," made of another protein called tau. Although many people develop these plaques and sometimes the tangles as they age, patients with Alzheimer's tend to have a lot more of them. Most experts believe that these plaques and tangles somehow block communication among nerve cells, slowly robbing a person of his or her memory and the ability to function normally.
Today, about 300,000 Canadians have Alzheimer's, but that number is expected to dramatically increase as baby boomers continue to age. And most of them will be female: twice as many women as men get the disease, partly because women tend to outlive their partners, but also because at menopause they suddenly lose estrogen, a hormone that seems to protect against Alzheimer's, says Diamond.
Page 1 of 5 – Discover the toll Alzheimer's disease can take on the family unit on page 2.
A family affair
As I was growing up, my parents were in pretty good physical health. Both were very active in the community. My mom did regular volunteer work, even serving for a time on the national board of the Canadian Save the Children Fund, while raising two children: me and my younger, adopted brother, Paul. My dad was a bookkeeper for a local paint company who, after he retired, became active in the Kiwanis and United Way.
When my mom was diagnosed, it was with "probable Alzheimer's" – "probable" because a diagnosis could be confirmed only when an autopsy showed the hallmark plaques and tangles in the brain. Blood work had ruled out other possible causes of her dementia-like symptoms, including Parkinson's disease, stroke and thyroid problems. A Mini-Mental State Examination and a more extensive cognitive exam also suggested Alzheimer's.
Mom accepted her illness and her increasing limitations with grace. Dad dropped everything to care for her. He tenderly bathed her, washed her clothes, fed her, sat with her and rarely left her side. When he had to go out, I took over, but it was difficult; his absences only made her anxious. She would continually ask when he was coming home.
Typical of Alzheimer's patients, my mom suffered several "deaths." Almost every day, the disease took away another little piece of her mind. There was also the physical death; she died in her sleep on Sept. 14, 1999, at the age of 85. The official cause was old age. (Alzheimer's is rarely the direct cause of death, but it makes people more vulnerable to other illnesses, especially pneumonia.)
Ten years after my mom first displayed signs of Alzheimer's, my dad started down a similar path. He began displaying classic Alzheimer's symptoms; for example, becoming confused and making unreasonable demands. Once he asked me to clean out the garage. After I started on the job, he ordered me to put everything back and threatened to lock me out of the house if I didn't.
Page 2 of 5 – Diagnosing Alzheimer's disease can be tricky. Find out if your friend or family member is getting an accurate diagnosis on page 3.
New diagnostic options
Although my dad was diagnosed with Alzheimer's in 2005 using the same elimination method that was used on my mom, new techniques are being developed that could soon offer more diagnostic options; for example, researchers are working on ways to detect the hallmark beta-amyloid in spinal fluid, in the blood, the eyes and elsewhere.
There are also new tests to uncover mild cognitive impairment (MCI), a condition that, in many cases, is a precursor to Alzheimer's disease – if detected early, a better outcome is likely. "There's going to come a time when people with MCI are going to be treated with drugs that will hopefully prevent them from developing Alzheimer's," says Diamond.
Brain imaging, too, can now help diagnose the disease in a living patient; no more waiting for an autopsy to confirm the Alzheimer's. A chemical injected into the blood attaches to the plaques in the brain and makes these plaques visible by advanced positron-emission tomography scans, says Diamond.
My dad, like my mom, had some key risk factors for Alzheimer's disease. Neither was well educated so they weren't challenged intellectually, and both were getting on in years. My dad is believed to have suffered a head injury and concussion as a child, while my mom had high blood pressure and a family history of Alzheimer's (at least two of her relatives had it).
Other risk factors include poor diet, strokes, high cholesterol and Down syndrome. Once linked to Alzheimer's, aluminum has generally been exonerated, but the role played by iron and other metals is still being investigated. Scientists are also looking at acrylamide, a synthetic chemical increasingly documented in a wide range of foods, from French fries to coffee, and known to cause nerve damage in humans.
Unlike my mom, who seemed to accept her condition, my dad fights it every step of the way. Such variations in presentations of the disease are typical. Some scientists, including Dr. Howard Feldman, a professor of neurology at the University of British Columbia, believe that there are indicators that Alzheimer's may be a syndrome rather than a single disease.
One of the toughest things about caring for my dad is his obsessions. Recently, he became fixated with odours. "Come and smell this," he says insistently. I come and sniff. "I don't smell anything," I reply. "You mean you don't smell it? Your nose must smell things differently than mine." One night he called 911 about what he considered a particularly foul smell. The next morning I hid the phone. He has barely noticed.
And then there are his repeated questions (the short-term memory of Alzheimer's patients is so poor that they may not remember what they've just said). According to a recent Canadian survey of Alzheimer's caregivers, verbal repetition is the most common symptom of Alzheimer's, next to forgetfulness. It's a symptom that can cause caregivers like me no end of distress. I calmly answer my dad's questions, trying not to sound exasperated. I've written down the answers to some of his frequently asked questions on a sheet of cardboard, which I leave for him to find and refer to. This alleviates the problem a bit.
Being able to laugh at the disease is vital for my sanity. Once, my father, angry that I had taken away his bankbook, chased me around the house. As he yelled at me, his loose-fitting dentures kept falling out, a sight that had me on the floor in stitches.
I learned several lessons from watching my mom's mental decline. One big one is that I can't do this alone (my brother is unable to provide much help as he works full time and cares for his partner, who has multiple sclerosis.) I have arranged for Red Cross employees to come twice a week to bathe my father and to wash his clothes. Dad also attends a day program for dementia patients twice a week at a local nursing home. The program involves physical and mental exercises such as memory and word games and easy puzzles.
Page 3 of 5 – Explore treatment options for patients with Alzheimer's disease on page 4.
Spending time and energy on myself is also important. It does my father no good if I'm not in prime shape physically, psychologically and emotionally. I go for long walks or bicycle up to 143 kilometres at a time just to clear my head. I also spend time with friends, go to church and do some freelance writing. Sometimes I put dad in overnight respite care so I can take a longer break.
Another godsend are the caregiver support group meetings I attend at the local Alzheimer Society of Canada. We're a group of women and men who are caring for a parent or spouse with Alzheimer's, a feat that can be unbelievably exhausting. We talk about our experiences, pass along tips and information, and share our emotions, which run the gamut from fear and resentment to a strange kind of peace and satisfaction. Those meetings are a true lifeline for me.
Typical of many caregivers, my dad kept my mom home far too long. I'm determined not to make the same mistake, so I have my dad on a waiting list for long-term care. I'll move him when caring for him gets too much for me. Fortunately, I have power of attorney for property and personal care, which makes handling his affairs much easier.
Having witnessed the mental decline of both my parents due to Alzheimer's, I am concerned about getting the disease myself. I try to optimize my chances of retaining my mental faculties by eating a healthy diet and staying physically and mentally active. And while my family history makes me vulnerable to Alzheimer's, I can't help but share the enthusiasm of Canadian scientists about an eventual cure. "I'm very optimistic about Alzheimer's," says Diamond. "I, and many others, look forward to seeing the disease brought under control in the next seven to 10 years or, perhaps, even conquered altogether."
Back in the early 1990s, when my mother first battled Alzheimer's disease, her treatment options were limited. Today, there are several choices with more on the way.
Drugs currently used to treat Alzheimer's include:
• Aricept (donepezil);
• Reminyl (galantamine);
• Exelon (rivastigmine); and
• Ebixa (memantine hydrochloride).
The first three drugs inhibit an enzyme that causes the neurotransmitter acetylcholine to break down; by allowing the acetylcholine to build up, the drugs slow, but don't stop, the progression of Alzheimer's. The fourth works to block the reuptake of another neurotransmitter, glutamate, and may help preserve cognition and memory. Possible side-effects of some of these drugs include nausea, vomiting, diarrhea and loss of appetite. Exelon is available in a patch that helps avoid some of these symptoms.
Scientists are also working on exciting new therapies that attack or inhibit beta-amyloid, the culprit behind Alzheimer's disease. These include:
• Vaccines that trigger the body to build antibodies against beta-amyloid, which is responsible for plaque formation (or tau, which causes the tangles).
• Intravenous immunoglobulin (IVIg), a purified mixture of human antibodies that helps get rid of beta-amyloid. In one study, at the New York-Presbyterian Hospital/Weill Cornell Medical Center in New York City, eight patients with mild to moderate Alzheimer's were given IVIg for six months. Most saw their cognitive functions stabilize or even improve.
• A class of drugs called beta-secretase inhibitors. These drugs block the process that splits beta-amyloid molecules from their larger parent molecules, preventing amyloid accumulation.
• Drugs that mop up beta-amyloid once it has formed.
• Gene therapy that silences or compensates for a defective gene that sets the stage for Alzheimer's.
• Estrogen replacement therapies that don't have a negative impact on the heart. "We're looking at chemicals – or molecules – that very closely resemble estrogen and do what that hormone does but without the adverse effects on the heart that [currently available] hormone replacement therapy has," says Dr. Jack Diamond, scientific director of the Alzheimer Society of Canada. (Scientists are also investigating the role of testosterone.)
• Stem cells that turn into new nerve cells to replace those that have died due to Alzheimer's disease.
• Cholesterol-lowering drugs called statins. They may have positive effects on the processing of amyloid. In research published in the journal Neurology, investigators studied donated brains and found that there were significantly fewer tangles in the brains of people who had taken statins prior to death than in those who had not.
• Diabetes drugs. With Alzheimer's disease, the brain doesn't make as much insulin – or use it as effectively – as it should. Researchers have noted that people with type 2 diabetes who take a class of drugs called glitazones, which help the body's cells better use insulin, are less likely to develop Alzheimer's disease.
Page 4 of 5 – How can you keep your brain active? Find out on page 5.
Tips for keeping the brain fit
Mounting research shows that, like your body, your brain needs exercise and good food to keep it in good working order. One recent study in the online edition of Neurology found that elderly people are 2.6 times less likely to develop Alzheimer's or other dementias if they are cognitively active. There are also other lifestyle habits that reduce your chances of getting the disease.
Here are a few tips to keep your brain on the go
• Maintain a heart-friendly lifestyle. Don't smoke. Keep a healthy body weight, control your blood pressure and cholesterol, and eat plenty of fruit and vegetables, especially those high in fibre and rich in antioxidants and omega-3 fatty acids. These habits are also good for your brain.
• Get a good night's sleep and get treated for sleep disorders. Sleep is very important for memory as well as mood.
• Keep physically active. A good cardiovascular workout, such as cycling, brisk walking or dancing, increases blood flow and may promote growth of new brain cells.
• Manage stress. Chronic stress can actually shrink parts of the brain. Try relaxation exercises and make time for yourself.
• Keep socially active. This reduces stress and loneliness and helps to stimulate the brain.
• Challenge your brain. Read a book, play chess or bridge, learn a new language or do puzzles. Cultural activities, like museums, plays and concerts, are not only entertaining, but they also enrich your brain.
For more information
To learn more about Alzheimer's disease and about other dementias, contact the Alzheimer Society of Canada.
I highly recommend the following books, most of which are available at Chapters/Indigo stores across the country.
• The 36-Hour Day (The Johns Hopkins University Press, 2006, $16.95) by Nancy L. Mace.
• Learning to Speak Alzheimer's (Houghton Mifflin Company, 2003, $29.95) by Joanne Koenig Coste. A companion to The 36-Hour Day, this guide helps Alzheimer's patients live as independently as possible.
• Voices of Alzheimer's (LaChance Publishing, 2007, $21.95) edited by The Healing Project. Caregivers tell their stories of caring for family members and patients with the disease.
• New Hope for People with Alzheimer's and Their Caregivers (Prima Lifestyles, 2002, $28.95) by Porter Shimer. This book provides information about the disease, treatment and care.
I also recommend the movie Away from Her, directed by Canadian Sarah Polley. Released in 2006 and starring Gordon Pinsent, Julie Christie and Olympia Dukakis, it's about a woman struggling with Alzheimer's disease. The movie is based on the short story "The Bear Came Over the Mountain" by celebrated author Alice Munro.
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