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When you least expect it
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Early-stage Alzheimer Disease is a devastating diagnosis, but prompt treatment and support groups can make all the difference
By Kate Cottrell Pat Sayer is a busy woman. After she retired, she got her licence as a marriage commissioner and has officiated at countless weddings; she also bakes, and babysits a two-year-old part time. But Sayer is most passionate about her work with the Alzheimer Society—she has helped with fundraising, participated in focus groups, and given media and personal interviews to help others learn more about Alzheimer Disease (AD). Incidentally, Sayer also has early-stage Alzheimer Disease. What’s her motivation? “It’s just my way of thanking the Alzheimer Society—it’s been a Godsend,” she says.
Talking about having Alzheimer Disease wasn’t always so easy for Sayer. After the Regina resident was diagnosed almost three years ago at the age of 65, she told no one but her immediate family for more than two years. She feared the stigma often associated with an illness like Alzheimer: “I’d noticed that people talk about AD as if it’s something dreadful—that stayed with me. I don’t want people to turn away from me because I have Alzheimer Disease.”
Then Sayer and her husband, Ted, joined their local Alzheimer Society branch early memory loss support group. After spending time with people “going through the same things we were, I decided that if we don’t start talking about it, people won’t learn about Alzheimer Disease and they’ll always shudder when they hear that we have this disease.”
Sayer’s feelings about having AD are shared by many others, according to findings of a series of focus groups conducted by the Alzheimer Society with participants of early-stage AD support groups, and online survey respondents. In addition to concerns about social stigma, respondents discussed issues surrounding the manner in which the diagnosis is given, driving competence, communication problems, relationships, and their hopes for research.
Telling someone they have Alzheimer Disease is a difficult task for physicians. Sayer’s diagnosis was delivered “very bluntly” at the end of her regular check-up. “I didn’t want to accept it—I was angry at the whole world and at God, because I thought it wasn’t fair.”
Despite the blunt delivery, Sayer credits her doctor for making a prompt diagnosis. She believes her current condition might be worse had she not started taking drug treatment when she did. Middle-aged and elderly people having persistent memory problems should be assessed without delay—early diagnosis may allow for early treatment, and that can offer significant benefits in the case of Alzheimer Disease. “Research has shown that patients maintain stability at more functional levels for a longer period of time when they are treated at an earlier stage of the disease, as opposed to when treatment is initiated later on,” says Dr. Karl Farcnik, a psychiatrist with the Division of Geriatric Psychiatry at the University of Toronto.
In early stage AD, which typically lasts for several years, most individuals are relatively normal and live independently, despite memory problems and some decline in level of functioning, Dr. Farcnik says. As AD advances, changes in personality, behaviour and difficulties with self-care begin to emerge.
Being diagnosed early lets individuals plan personal affairs and make treatment decisions for their future while they are still competent, so that when the disease progresses, says Dr. Farcnik, “these advance directives can be relied on, rather than having the public trustee’s office make management decisions, something most families would prefer not take place.”
As physicians and the public are becoming better educated about dementias such as AD, more people with memory problems are being assessed and diagnosed earlier. Mild Cognitive Impairment (MCI) is a condition in which individuals with otherwise normal intellectual function have persistent difficulties involving memory and language, such as repeatedly forgetting words or names. Dr. Farcnik finds it significant that when studied over a five-year period, approximately 70 per cent of individuals with MCI developed AD, at a rate of about 10 to 15 per cent per year.
Although treatment protocols for MCI are currently being developed, Dr. Farcnik suggests, “It’s prudent for older people with memory problems to see their family physician as early as possible, so they can at least be monitored.” An assessment will also rule out other possible sources of memory problems, which range from medical and psychiatric conditions to use of certain types of medications.
A diagnosis of AD affects the whole family, near or far. When Sayer told her four grown, out-of-town children that she was doing fine, they weren’t so sure. “Maybe they thought I just said that so they wouldn’t worry,” says Sayer, who then put her two daughters in touch with Joanne Michael, Support Coordinator with the Alzheimer Society of Saskatchewan. “She helped them feel better about not being able to be here,” says Sayer. Michael adds: “Feelings of anger and denial are normal steps on the road to acceptance; it’s part of the grieving process.”
Changes in abilities as the disease progresses are experienced as losses, which Sayer finds frustrating. Although she is still licensed to drive, Sayer has voluntarily stopped adding, “My husband doesn’t like to give up the wheel anyway.” And while she relies on her recipe books more than her memory these days, she dreads the thought of giving up her life-long passion for baking.
Support is especially important for caregivers, Sayer says. Regina’s Alzheimer Society program is innovative in that it includes interested caregivers as well as people with early memory loss. All participate in a six-week, two-hour-a-week education series about AD, coping strategies, disclosure, and living with memory loss. “Graduates” of this program, like Sayer and her husband, eagerly attend bi-weekly meetings: “We start each session as a group, and then we separate so the caregivers are in the other room,” says Sayer. Having the freedom to take off their “game faces” and share experiences has meant “we’re almost like family now,” Sayer says. And that support extends beyond Society meetings, notes Joanne Michael: “They’ll often car-pool, check up on each other, and visit in hospital.”
Sayer puts it best: “When we joined the early memory loss support group, it was just as if somebody said, ‘Here’s your life back.’ …When you share something with someone, even if it isn’t a happy thing, you’ve shared it and you feel better.”
Hopes for the future
Currently, there are three cholinesterase inhibitors approved for treatment of AD—Aricept, Exelon, and Reminyl. These drugs help delay progression of the disease, although they also have unique properties. However, in the absence of studies that directly compare these medications, it’s unclear whether they differ significantly in terms of their effectiveness, says Dr. Karl Farcnik, a psychiatrist at the University of Toronto.
Research indicates that Vitamin E is beneficial in the treatment of AD. Whether it is necessary to take 2,000 International Units (IU) a day, the dose used in a major study, has yet to be determined, Dr. Farcnik notes, but “most patients can tolerate that [dosage] without side effects.” However, Vitamin E should not be used by patients with bleeding disorders or those taking blood thinners (anticoagulants) because it affects blood clotting. “Trials of gingko biloba suggest its efficacy is limited at best, and there are also concerns about consistency amongst the various preparations,” says Dr. Farcnik, cautioning that the herb also affects blood clotting.
Estrogen replacement therapy (ERT) may offer some protection against developing Alzheimer Disease, he says, but in studies of women who already had AD, ERT hasn’t been shown to be of any benefit. Use of nonsteroidal anti-inflammatory drugs (NSAIDs) has been associated with a lower incidence of AD, as observed in studies of patients with rheumatoid arthritis, but Dr. Farcnik notes that the high incidence of gastrointestinal bleeding makes these drugs unacceptable for use in this population.
Recently, there has been some excitement about an investigational vaccine that has been shown in laboratory studies to inhibit the formation of beta-amyloid deposits, called plaques, which are felt to play a significant role in AD. The possibility of a vaccine is encouraging, Dr. Farcnik says, “although side effects recently encountered in human trials may slow its development.”
Research continues into other drugs that block the formation of plaques, and into potential treatments such as statins, cholesterol-lowering drugs which may have a neuroprotective effect. Meanwhile, he adds, “continuing to challenge oneself cognitively, especially with activities that use language skills like crossword puzzles and word games, may provide some protection against developing Alzheimer Disease.” And that advice can benefit every one of us.
Tips for loved ones
These tips are from the booklet Memory Problems? produced by the Early Stage Support Groups in the North/Central Okanagan Region of the Alzheimer Society of B.C. It was created by people with dementia to help people better understand the disease.
> Please don’t correct me. I know better—the information just isn’t available to me at that moment.
> Remember, my feelings are intact and get hurt easily.
> I usually know when the wrong word comes out and I’m as surprised as you are.
> I need people to speak a little slower on the telephone.
> Try to ignore off-hand remarks that I wouldn’t have made in the past. If you focus on it, it won’t prevent it from happening again. It just makes me feel worse.
> I may say something that is real to me but may not be factual. I am not lying, even if the information is not correct. Don’t argue; it won’t solve anything.
> If I put my clothes on the chair or the floor, it may be because I can’t find them in the closet.
> If you anticipate that I am getting into difficulty, please don’t draw attention to it, but try to carefully help me through it so nobody else will be aware of the problem.
> At a large gathering, please keep an eye on me because I can get lost easily! But please don’t shadow my every move. Use gentle respect to guide me.
> Sometimes you give me the message that you think I am faking these problems. What you don’t see is my terrible confusion and my hurt knowing how you feel.
> I don’t mean to frustrate you. I know you get impatient and tired of telling me things three times in a row. Please be patient.
> Ask me what I think or want. Don’t assume that you know.
> Believe I still love you, even if I am having trouble showing it.
Kate Cottrell is a medical writer living in Prince Edward County, Ontario.
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