UNDERSTANDING AND DEALING WITH DEMENTIA
Less than five per cent is hereditary and most instances don't trace back to genetics
One of Alayne Lebsack's most distinct childhood memories was visiting her grandmother in a nursing home.
“I remember we bought her a new pair of shoes, and I was so excited. We wheeled her out into the hallway where she put them on, and then she said, `Get out my way, little girl.' And that just crushed me,” the Calgary mom and small business owner recalls.
Lebsack's grandmother didn't recognize her seven-year-old granddaughter because she had Alzheimer's disease. For Lebsack, all her memories of her grandmother are in that state.
“I feel like the disease robbed me of the relationship. I hear how funny she was, and I would've loved to have gotten to know her. I grasp onto these stories of who she really was — without really knowing,” she admits.
That's why Lebsack and her family are supporters of Alzheimer Calgary, to raise awareness and funds by participating in their annual Thanksgiving run.
Alzheimer's is a disease of misconceptions. Many people aren't entirely sure of the difference between Alzheimer's and dementia. There are over 100 different types of dementia, and Alzheimer's is the most common.
“When a diagnosis is made, they often don't know if it's Alzheimer's or dementia, and there can even be multiple dementias happening for a person. Sometimes it's not until an autopsy that they can tell what type,” admits Barb Ferguson, executive director of Alzheimer Calgary.
Dementia refers to a set of symptoms and is much more than memory loss. It's an inability to perform daily tasks that were once familiar (such as the steps required to make a cup of coffee).
“We all are forgetful at times. We go to the mall, park and then can't find our car. Someone with dementia might forget they drove there or that they have a car,” notes Ferguson.
Changes in personality and behaviour can also be symptoms of dementia. Communication may also become more difficult. If someone with dementia is feeling pain, it may be challenging to describe what they're feeling, and instead, a behaviour (such as irritability) may pop up because of it.
Currently, more than half of our city has the wrong idea about the link between genetics and a dementia diagnosis, with 56 per cent stating that they believe dementia is primarily inherited through family genes. In fact, according to the Alzheimer Society of Canada, less than five per cent of dementia is hereditary, and most instances do not trace back to genetics.
Unsurprisingly, incorrectly believing dementia is genetically linked can lead to unnecessary worry among those with a diagnosis in their family, such as Lebsack.
“Every time my mom forgot something, I lived in fear she might get it, or at least one of us would. Getting rid of that fear and overanalyzing every time someone forgot something was a weight lifted off my shoulders. It's not a good headspace to be in,” she admits.
Anyone can develop dementia, regardless of age, income, education, cultural background or family history. It's a progressive disease, and on average, one will live with it for 10 to 12 years.
Age is the biggest risk factor for developing dementia, and while you can't stop the march of time, there are ways to reduce your risk and help slow the progression of the disease.
What's good for your heart is good for your brain. Research suggests high blood pressure in mid-life leads to increased risks of dementia. Untreated hearing loss can increase the risk of cognitive decline and dementia.
Exercise delivers more oxygen to the brain and fosters the growth of new nerve cells, which are crucial for memory, learning and decision-making. Incorporating moderate-intensity movement, such as brisk walking, into daily routines can slow cognitive decline.
Challenging your brain, as well as your muscles is also essential. This can be accomplished through crossword puzzles, reading, learning a new language or simply using your less dominant hand to brush your teeth.
Maintaining connections with friends and neighbours is paramount, as social isolation is a significant risk factor. Most communities have 55+ clubs and municipal programming with active aging resources and events.
If you suspect a loved one has dementia, the first thing to do is get a diagnosis from a family physician. What we (non-medical professionals) think is dementia could be something else like depression or a B12 deficiency.
The trickiest part is often getting someone to make and attend the appointment. Dementia support navigators at Alzheimer Calgary can offer tips and strategies for doing this. Ferguson recommends arriving prepared for the appointment with a list of symptoms you've noticed and discussing these with the doctor. Getting correctly diagnosed isn't something to put off.
“The earlier people connect to resources and services, the better the outcome for families. Some people delay seeking a diagnosis until a crisis occurs, and a person could end up in the ER,” warns Ferguson.
Contrary to popular belief, a diagnosis of dementia doesn't signal the end of a purposeful life.
“We don't want anyone defined by dementia. You can still be active in your community, socialize with friends and maintain some of your hobbies. It may look a little different, but you can still have meaningful relationships after a diagnosis,” assures Ferguson.