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Chandrakanta Das, 87, of Mississauga, has been diagnosed with early-stage Alzheimer disease. (Peter Power/Peter Power/The Globe and Mail)
Chandrakanta Das, 87, of Mississauga, has been diagnosed with early-stage Alzheimer disease. (Peter Power/Peter Power/The Globe and Mail)

Q&A

Your dementia questions answered Add to ...

CAREGIVING AND FAMILY ISSUES

Q: My father insists on driving although I don't believe he is safe behind the wheel. He gets angry when I bring it up. How do I get him to give up driving without hurting our relationship?

A: Caregivers admit to some creative tactics in this area - from hiding the keys, to removing the battery so dad's car won't work, even sending the vehicle "to the shop" for a while. The problem is that this makes the caregiver responsible for what is often a very painful loss of independence. Judy McCann-Beranger, an elder mediator in St. John's, suggests booking an appointment to alert the doctor about your concerns - putting the decision in his or her hands. In most provinces, physicians are required to inform the motor vehicle department if someone should no longer be driving for health reasons. The real advantage: This way the doctor is to blame, not you. "Whenever dad gets frustrated, he can be angry at the doctor or motor registration, and not at the family member," says Ms. McCann-Beranger. She also suggests using some less-devastating language - saying the decision is "for a while," instead of "for the rest of your life."

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Q: I am the caregiver for my mom who was diagnosed about two years ago with dementia. Although she has a partner, I do all the cleaning, cooking, finances, etc. The one thing I need help with is trying to get her to take a shower and let me assist her. I also want them to move into my house into a basement apartment I have but I don't want to force her. One day she agrees, and the next day she changes her mind. Help!

A: Caregivers need to educate themselves about the symptoms and progression of dementia so that they know what to expect. Having open conversations about the disease is vital, experts say, as is enlisting the help of other family members and friends in the discussion. But don't wait, says elder mediator Judy McCann-Beranger. "It is important to address this early on while your mom can become more comfortable and accepting of assistance." That means talking to her partner, about how to get the help she needs and make a plan, perhaps by slowly moving her into the new apartment.  If a move is in the future, it is better to do it sooner rather than later, so that she can adjust to the new environment while her memory is still relatively strong. "It may not be realistic to expect your mom to be comfortable immediately," says Ms. McCann-Beranger. "Routine that is gently and supportive will eventually become familiar and safe."

 Q: I just turned 60 and my memory is not what it used to be, especially the short-term memory. When or how do you know what is normal for my age and what needs to be examined more closely?

A: Who hasn't misplaced a wallet or keys, or blanked on the name of someone they've met several times before? It is completely normal to forget things on occasion - but one of the signs that it might be time to see the doctor is if memory lapses are beginning to interfere with your daily living. If you're worried, book an appointment, and have your doctor assess your memory loss. Click here for information and warning signs.

Q: My husband refuses to let me tell anyone about his Alzheimer's diagnosis. How can I convince him not to keep it a secret so that his children can spend time with their father before he is too ill, and they can help his wife with his care?

A: Everyone copes with an Alzheimer's diagnosis differently, and it can be complicated to balancing their right to privacy with a caregiver's need for support. It's not uncommon for patients to want to shield family members from their symptoms or pretend that their problems will just go away, points out Mary Schulz, the national director of support services and education for the Alzheimer's Society. But it is important to talk about it: Making changes and investigating treatment may help your husband maintain his abilities longer - and help plan for the future so his wishes may be respected. Enlist the help of a support worker at the Alzheimer's Society, an elder mediator, or a pastor - often, says Judy McCann-Beranger, "people don't know where or how to start this extremely difficult conversation," and need a plan on how to do it, such as telling each child individually, or giving the news as a group with a support person present who can answer questions.

Q: Is it correct to use the word "dementia" as I was scolded by a sister-in-law, who is a social worker. She informed me that using this word is a major faux-pas and I should use the term "cognitive difficulties." I was not using it derogatively regarding anyone. Did I miss a subtlety of any sort here?

A: The experts say no: Dementia is the correct term. In fact, a spokesperson for the Alzheimer's Society pointed out that "cognitive difficulties" can be caused be other illnesses beside dementia, so the terms are not interchangeable. That said, like many other brain diseases, illnesses such as Alzheimer still carries a stigma, which is why many patients conceal their diagnosis, so it is also important to talk openly about the disease to increase awareness and understanding.

Q: I have just been diagnosed with Alzheimer's. How do I get my affairs in order?

 

A:  Since Alzheimer's is a progressive disease, it is important to address legal matters and care decisions early on. Toronto lawyer Jan Goddard, a specialist in elder law, offers this step-by-step guide:

      - Plan ahead:  Dementia affects your insight and judgment so you cannot rely on making good choices. Make sure you have a will, and power of attorney.

     -  Be open: Share your plans with family, friends and trusted advisers so everyone knows what you want.

      - Anticipate conflict  If members of your family don't get along while you are well, things will not improve if you develop dementia; make a plan that minimizes the possibility of conflict.

      -  Put yourself first: Make your priorities clear; if you want your money spent to keep you at home, even if there's nothing left for your family to inherit, say so.

      - Provide for oversight:  Consider a plan that allows for some monitoring of your decision maker by others you also trust

Q: My mother has just been diagnosed with Alzheimer's. I have several siblings, but she has put me in charge of her finances and care. How do I make sure I do things properly?  

A: Experts says one of the most important things is to keep an open line of communication with your siblings and others involved - even it is just sending simple e-mail updates about your mother's condition. However, for any financial information or complex issues around care make sure you speak by phone or in person, to avoid any misunderstandings, and foster a sense of openness that helps reduce conflict down the road, when hard decisions about care and money will need to be made. In addition, elder-law specialist Jan Goddard offers these suggestions:

     - If you are making decisions for a family member with dementia, get legal advice about the rules you must follow.

    -  Remember that the rules require you to put the interests of the incapacitated person ahead of your own; watch for conflicts of interest.  

     -  Keep full, detailed records of your dealings with the other person's property.

Q: My siblings don't want to acknowledge that my mother is having memory problems, and don't agree on the level of care she needs. How can we get on the same page?

A: Accepting a parent's illness is hard, and depending on their relationship with the parent, siblings can result in different ways. It's a grieving process, says Jan Robson, dementia helpline co-ordinator with the Alzheimer's Society in British Columbia, with all the varied reactions involved - shock, anger, disbelief, denial, and, hopefully acceptance. Some siblings, however, may never reach that final stage. Ms. Robson advises: "First of all, try not to take their lack of acceptance as an attack on you. Instead, learn all you can about the disease and try to educate them in little bits and pieces. Try to avoid the blame game or useless comparisons about who does the most for your mother. It is probably safe to say that all of you love her - that's what makes this so tough."

Make sure all your mother's legal documents are in order, and try to bring your siblings together, possibly with someone from the Alzheimer's Society. But ultimately, your focus should be on the safety and well-being of your mother. Says Ms. Robson: "If she is at risk, and your siblings do not want to acknowledge this, contacting your local health authority responsible for seniors care is a way to remove the dilemma from the personal realm.

MEDICAL ISSUES

Q: What is the difference between Alzheimer's and dementia?

A: The word dementia is derived from the Latin words " de" meaning "apart" and " mens" - a derivative of " mentis" or "mind".

Literally, the word means the body being separated from the mind. In medical terms dementia is the progressive deterioration in cognitive function - the gradual loss of the ability to process thought.

Alzheimer is a brain disease characterized by abnormal deposits (plaques) in the brain of a protein fragment, beta-amyoloid, and twisted strands (tangles) of the protein tau. One of the principal symptoms of Alzheimer is dementia. But there are many other conditions that cause dementia.

Q: Am I correct that there are 20 categories of dementia and one of them is Alzheimer's?

A: There are dozens of diseases that affect the brain and can cause dementia; the most common - and best-known - is Alzheimer's. Vascular dementia, caused by interruption of blood flow to the brain (mini-strokes), is also common. Lewy bodies dementia, frontotemporal dementia, Pick's disease, Parkinson's disease and Creutzfeldt-Jakob disease are other brain diseases whose principal symptom is dementia. While dementia usually grows worse over time, some forms are reversible: normal pressure hydrocephalus (known commonly as water on the brain) can be treated by installing a shunt that drains fluid from the brain.

Q: Is delirium the same thing as dementia?

A: Delirium is a sudden state of confusion and disorientation. It is similar to dementia because there is a loss of cognitive skills, but it is not a permanent condition. Delirium, which is very common in frail seniors, is almost always caused by a medical problem, such as a drug reaction, an infection, a heart problem or a stroke. Delirium is not a dementia per se, but often occurs in people with dementia.

Q: As I understand it, Alzheimer is a disease that starts early in life (often 55 to 60) and patients degenerate a lot faster than those with general dementia, which starts later (in the 70s and 80s). Is that correct the elderly suffer from dementia and not Alzheimer's?

A: Dementia can occur at any age, for a host of reasons (see above), but it is far more likely in older persons. In fact, the rate of dementia doubles every five years after 65 - from about 2.5 per cent among 65-year-olds to over 40 per cent in 90-year-olds.

     The most common cause of dementia at all ages is Alzheimer's disease. But vascular dementia is also quite common among older seniors, due to the high rate of stroke.

     You are quite correct to point out, however, that when a person has early-onset dementia (before 60, sometimes as young as 40) they tend to deteriorate much more quickly. But again, most cases of early-onset dementia are caused by Alzheimer's.

Q: Is senility the same thing as dementia?

A: Senility is just an old-fashioned word for dementia. But senility also implies that loss of cognitive function is a normal part of aging. It is not. We know now that dementia is caused by specific changes to the brain and while those conditions are more likely in old age, they are not caused by aging.

Q: How is a person diagnosed with dementia?

A: Despite the amazing advances made in neurosciences, diagnosing dementia still consists principally of detective work. There are six main steps leading to diagnosis: taking a patient's history; interviewing a caregiver or family member; physical examination; brief cognitive tests; basic laboratory tests and; in some cases, imaging tests like a MRI.

Because a diagnosis is rarely urgent, these steps are usually carried out over a series of visits. The physician is looking for three main things: a clinical diagnosis (dementia or not), a probable cause (i.e. a history of head trauma), and to identify any treatable related conditions (such as high blood pressure causing mini-strokes).

People complaining of memory loss will undergo brief cognitive tests. The most common is the Mini-Mental State Examination (MMSE), a 30-question test that takes about 10 minutes. Various functions are tested, including arithmetic, memory and orientation; for example, patients are asked to do a clock-drawing.

As a rule of thumb, a score of 18 to 26 (out of 30) means mild dementia, 10 to 18 moderate dementia and under 10 severe dementia.  

Q: Is there a blood test or a biological test for diagnosing dementia?

A: There is no simple blood test to detect dementia. However, there are a number of diagnostic tests that can reveal if a person if their brains have tell-tell signs of Alzheimer's and other brain diseases. The tests - many of which are used only for research purposes - include PET scans of the brain and spinal-fluid analysis that can detect signs of the distinctive plaques and tangles that are characteristic of Alzheimer's. Similarly, MRIs can detect shrinkage of the hippocampus, a part of the brain involved in memory.

Testing for genetic risk factors associated with the disease has been available for years. If someone carries two copies of a gene called apoE4, one from each parent, they are nine times more likely to get Alzheimer's; one copy makes them three times more likely.

Testing, however, poses an ethical dilemma because there are very few effective treatments. Genetic tests are done principally on people with a strong family history, particularly with early-onset dementia.

Q: And how do they know what kind of dementia a person has?

A: The only way a definite diagnosis can be done is with an autopsy, after death, which is not very practical.

     However, there are certain characteristic symptoms of various brain diseases that help distinguish between them. The memory loss (remembering names and recent events in particular), confusion and disorientation that people associate with Alzheimer's occur with most brain diseases.

     But with frontotemporal dementia, for example, a person will have real difficulty with language and often abrupt personality change; with Lewy Bodies dementia, patients have visual hallucinations; while Parkinson's is characterized by muscle rigidity and tremors.

Q: What causes dementia? Are heavy metals a factor?

A: There is no single cause of dementia and, generally speaking, there is no single cause for the various brain diseases that cause dementia.

     The hallmark of Alzheimer is beta-amyloid plaques and tau tangles, but it is not clear why they occur. Genetics plays a role, and so too does lifestyle and environment. What scientists are searching for are triggers so they can de-activate them and prevent damage.

The theories are many: environmental toxins, infections, and lack of insulin. It is a fairly common belief that aluminum and products that contain traces like cooking pots and antiperspirants cause Alzheimer's, but there is no real scientific evidence for those theories.

In some cases though, the cause of dementia is more clear.

With vascular dementia, the interruption of blood flow to the brain kills cells, leading to loss of brain function. In new variant Creutzfeldt-Jakob disease, the prion causing the brain damage is believed to be transmitted when a person consumes beef from an animal with bovine spongiform encephalopathy (mad cow disease).

Q: What is the link between alcohol consumption and dementia?

A: There is type of dementia that occurs as the result of long-term excessive drinking. The formal name is Wernicke-Korsakoff syndrome, but it is more commonly called alcohol dementia.

Alcoholics often suffer from malnutrition, and Warnicke-Korsakoff syndrome occurs in those with thiamine (vitamin B1) deficiency, also known as beriberi. The symptoms are very similar to Alzheimer's, but sufferers tend to be affected at a relatively young age.

Alcohol can also be a problem for those already suffering from dementia. It is not uncommon for patients with dementia to undergo personality changes and they can unexpectedly become heavy drinkers. Depression is also common in patients with dementia, and that can lead to inappropriate use of alcohol.

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