This is without a doubt the hardest post I have ever had to write. My sweet incredible dad was diagnosed with Alzheimer’s disease a couple of years ago, which sent us all reeling sideways with the news. I wanted to share my experience and thoughts with you all here today as I know we aren’t the only family going through this.
I’ve been putting off this post for ages – it is such an emotional one to write and share. Truth be told, it’s so much easier to stick my head in the sand and pretend that this whole thing doesn’t exist. But it does. Right now my dad is still my dad. He may have lost some of his short and mid-term memory, but he’s still witty, sharp, loving and remembers all of us and our precious childhood memories. To think of a future day where this may not be the case breaks my heart in two. We remain hopeful.
People living with dementia and their caregivers are facing more social isolation than ever – it’s so sad. January is Alzheimer’s Awareness Month, so I thought that this would be a good time to share our journey with you to help those of you going through this (or those who will at some point) in your own families. This is a long post, grab a cup of coffee my friends.
What is Alzheimer’s disease?
Alzheimer’s disease is a chronic neurodegenerative disease that destroys brain cells, causing thinking ability and memory to deteriorate over time. Alzheimer’s disease is not a normal part of aging, and is irreversible; over half a million Canadians are living with Alzheimer’s disease or another form of dementia. There is no cure for Alzheimer’s disease at this time.
Seeing the Signs
My dad, Bob, has been diagnosed with Early Onset Alzheimer’s disease. I remember the day that we both admitted what was going on – it was such a sad day. My dad was over at my house helping me put up a curtain rod in our spare bedroom, and I could see him struggling with orientation of the hardware – it wasn’t something he would normally have a hard time with. I asked him: “Dad, are you ok”? To which he replied “No. No, I’m not ok, I think I have Alzheimer’s disease”. “I know Dad”, I said, having seen signs (see the end of this post for a list) creep up over the years. And we both broke down and cried.
It took a long time before he could share this with my mom: how do you tell the love of your life something so life-changing? My parents are like a page out of the Notebook: they really are so in love (I wrote a post about their secret to a happy marriage). And my dad is such an incredible human – the whole thing just breaks my heart in two…why him?
It’s all in the Family
My dad’s greatest fear, since his own dad was diagnosed with Alzheimer’s disease, was getting the disease himself. Alzheimer’s disease has a strong genetic component; the cards were stacked against him. My dad’s genotype is APOE4 and his dad developed Early-Onset Alzheimer’s disease at a young age as well. Though my dad was officially diagnosed a few years ago, he noticed symptoms a solid decade before this. My dad is 71 years old.
I have been told that I have, genetically, a 50% chance of having the same genes responsible for early onset Alzheimer’s disease. There are tests that you can get to know for sure but they aren’t recommended. The reason? There is no cure. Do you really want to find out that you may be destined for such a future without a glimmer of hope? You can’t unlearn something like that.
Getting Diagnosed with Alzheimer’s disease
Alzheimer’s disease is a hard condition to diagnose. To be truthful, his family doctor at the time (and the one before that) was very dismissive of his concerns, stating that ‘we all forget things once in awhile’. My dad knew better. It was frustrating. See here for a link if you are wanting to learn more about the process for getting diagnosed. It wasn’t until my dad was enrolled in a formal clinical trial that he received a clear and formal diagnosis.
I suppose my point is to listen to your gut – you know when something isn’t right – and push for getting the help you need from a qualified medical professional.
Clinical Trial for Alzheimer’s
My dad responded to an ad that he saw looking for subjects for a clinical trial for a new Alzheimer’s therapy. The company Biogen was performing a double blinded study on a therapy called Aducanumab that is a human monoclonal antibody designed to treat Alzheimer’s disease. He has been in the study for a couple of years now (it was halted for a period of time – where to our chagrin we found that he was in the placebo arm of the study – but was restarted and now he is getting the full dose). We are hopeful that the drug will help slow the progression of the disease. There are many different trials studying Alzheimer’s disease (I wish there were more), with new discoveries happening every day.
Actions to reduce your risk of dementia
There are things that are out of your control (ie: genetics), and things that you can control. The following are actions that you can take (and not to sound preachy but we should all be doing these things) to help reduce your risk of dementia.
- Exercise daily: (especially aerobic activities) improves blood flow to the brain and enhances your mood.
- Challenge your brain: do things a different way (ie: with the opposite hand),
- Eat a healthy diet: lots of dark leafy greens, berries, nuts, water, limiting processed foods and sodium … more to come on this! Check out the MIND diet in the meantime.
- Be social (as much as you can!). Social interaction is important – you may need to get creative right now, but connection is crucial.
- Manage stress: excess stress can cause vascular changes and chemical imbalances that are damaging to the brain and other cells in your body. It’s important to control stress for our brain health and general health.
10 Alzheimer disease warning signs source: Alzheimer.ca
- Memory loss that affects day-to-day abilities. It is normal to occasionally forget appointments, colleagues’ names or a friend’s phone number only to remember them a short while later. However, a person with Alzheimer’s disease may forget things more often or may have difficulty recalling information that has recently been learned.
- Difficulty performing familiar tasks. Busy people can be so distracted from time to time that they may forget to serve part of a meal, only to remember about it later. However, a person with Alzheimer’s disease may have trouble completing tasks that have been familiar to them all their lives, such as preparing a meal or playing a game.
- Problems with language. Anyone can have trouble finding the right word to express what they want to say. However, a person with Alzheimer’s disease may forget simple words or may substitute words such that what they are saying is difficult to understand.
- Disorientation in time and space. It is common to forget the day of the week or ones destination – for a moment. But people with Alzheimer’s disease can become lost on their own street, not knowing how they got there or how to get home.
- Impaired judgment. From time to time, people may make questionable decisions such as putting off seeing a doctor when they are not feeling well. However, a person with Alzheimer’s disease may experience changes in judgment or decision-making, such as not recognizing a medical problem that needs attention or wearing heavy clothing on a hot day.
- Problems with abstract thinking. From time to time, people may have difficulty with tasks that require abstract thinking, such as balancing a chequebook. However, someone with Alzheimer’s disease may have significant difficulties with such tasks because of a loss of understanding what numbers are and how they are used.
- Misplacing things. Anyone can temporarily misplace a wallet or keys. However, a person with Alzheimer’s disease may put things in inappropriate places: for example, an iron in the freezer or a wristwatch in the sugar bowl.
- Changes in mood and behaviour. Anyone can feel sad or moody from time to time. However, someone with Alzheimer’s disease can show varied mood swings – from calmness to tears to anger – for no apparent reason.
- Changes in personality. Personalities can change in subtle ways over time. However, a person with Alzheimer’s disease may experience more striking personality changes and can become confused, suspicious or withdrawn. Changes may also include lack of interest, fearfulness or acting out of character.
- Loss of initiative. It is normal to tire of housework, business activities or social obligations, but most people regain their initiative. However, a person with Alzheimer’s disease may become passive and disinterested, and require cues and prompting to become involved.
Helpful Alzheimer’s Disease Resources
I will be writing more on this in the upcoming months, sharing my insights into the disease, things that have helped, and how to eat well to mitigate your risk of dementia.
The most helpful resource to-date for me has been the Alzheimer’s Society of BC.
- The First Link® Dementia Helpline is for anyone affected by dementia, whether professionally or personally. Get the support you need, when you need it. 1-800-966-6033
- Alzheimer’s disease and forms of dementia causes changes in the brain which can appear in the person’s behaviour. The Alzheimer Society of B.C. offers a range of education including webinars, early stage dementia support, and tele-support. They also offer caregiver support so that caregivers can learn how to understand behaviour as a form of communication and explore strategies for determining what the person with dementia might be trying to communicate. https://alzheimer.ca/bc/en/help-support/programs-services
- The annual Breakfast to Remember fundraiser (highly recommend) will be virtual this year on March 4th with Chris Hadfield as a keynote speaker – for tickets: https://alzheimerbc.akaraisin.com/ui/breakfasttoremember
Note: this article is a reflection of my own personal experience, and that of my dad’s, with Alzheimer’s disease. This information does not replace the advice of a medical professional.