Has someone you love recently been diagnosed with Alzheimer’s disease? Are you looking for guidance on how to support them in the day-to-day? Alzheimer’s disease is a common form of dementia, and it can be extremely overwhelming and demanding for both patients and families who are juggling the many details of everyday life. It’s important to remember that despite the hardships, there are ways of coping with the stress. In this article, Spark caregivers share their thoughts on how to care for a loved one who’s been recently diagnosed with Alzheimer’s disease.
What is Alzheimer’s Disease and How Does It Differ from Dementia?
Alzheimer’s disease is neurodegenerative, meaning it kills neurons in the brain and central nervous system. It’s chronic, meaning it’s persistent and long-lasting. And it’s progressive, meaning it gets worse over time. There are many ways it changes your brain. It impacts not only memory, but how you think, act and feel.
While “Alzheimer’s disease” and “dementia” are often used interchangeably, they’re not the same thing. Dementia is a general term for a group of symptoms caused by multiple diseases. Alzheimer’s is the most common cause of dementia.
Most people are aware that Alzheimer’s affects memory, but there’s a lot more to it than that. It causes challenges with many daily tasks. Simple activities such as walking, using a phone, using a key, or finding the bathroom can be incredibly frustrating.
Helpful Tips from Our Caregivers
Validate
Because of how Alzheimer’s affects memory and thinking, it’s common for people to make mistakes. For example, when they ask to see a family member who has passed away. When this happens, don’t automatically correct them. This can bring up the unnecessary trauma of reliving their loved one’s death. Instead, ask questions about the person they’re focused on. This may help rekindle a few memories, or at the very least, validate what they’re saying. Allow them to live in the moment.
Engage, Engage, Engage
Much like asking questions will help with validation, engagement encourages revisiting memories while creating meaningful conversation with your loved one. Even if you already know the answers, you might discover more by asking questions like:
What did you do for a living? What do you love most in life? What’s your favourite meal? Where have you travelled to?
Don’t be shy to dig deeper. Try showing a picture of something that relates to their life and see what it sparks. Have fun with the exercise and be open to learning more.
Be Patient
A person with Alzheimer’s will often mimic how you are feeling. If they are met with patience and compassion, they are much less likely to be agitated. If they repeat themselves over and over again, take some deep breaths and remember that they are just as frustrated about it as you are, if not more. Find the humour in their situation. If you can laugh with (not at) your loved ones about some of the things they do and say, you’ll both feel less overwhelmed.
Keep Active
Our biggest recommendation is to keep your loved one with Alzheimer’s physically and cognitively engaged in as many daily activities as possible.
Vanessa Brault, Spark’s Care Partner, believes “consistency is key” when it comes to keeping loved ones active:
“Gardening together is a wonderful way to engage their senses through the smell and touch of flowers and plants.
Encourage them to do little things, like picking out which vegetables to buy at the grocery store. These small but significant day-to-day gestures can accumulate and help with bigger things.”
Get Creative
Explore creative ways to engage with the reality of living with Alzheimer’s. Browsing through old photos is one great activity that practices memory recall. Photos help prompt memory signals without any added pressure. By asking questions and reminiscing together, you can gently guide your loved one back to memory.
Allison Carroll, Spark’s Director of Community Engagement and Founder of Spark U, has a lot of experience working with people who live with Alzheimer’s. A former caregiver, Allison, shared a heartwarming story that illustrates all of these things: validation, engagement, patience, activity and creativity:
“In a retirement home I was caregiving at years ago, there was a man who had been living with Alzheimer’s for a number of years. He’d been retired for decades, but every morning, without missing a beat, he would prepare himself to go to work — just as he used to. He would dress himself in a suit and tie, grab his briefcase and then try to leave the building. Of course, he would always get stopped by the staff, leading to frustration and a constant worry of being late.
Finally, one of the caregivers had a brilliant idea: why not throw a retirement party for him? After the event, they placed several photos from the party on their wall of pictures dedicated to residents. This gave him a visual cue to jog his memory, while providing photographic proof of the retirement. They even taped a picture from the party to his walker, so that in the mornings when the man was still “getting ready for work”, the caregivers could point to it and gently remind him that he was no longer working. He could finally enjoy his retirement years.”
Resources to Help Guide You Through
The Alzheimer Society has many resources, including education, research and local events. The First Link program is specifically designed for families new to dealing with Alzheimer’s and Dementia.
A Walk Through Dementia and the Dementia Simulation Toolkit are virtual simulators that allow you to experience what it feels like to live with Alzheimer’s and other forms of dementia.
Still Alice is a highly acclaimed fact-based novel written by author and neuroscientist Dr. Lisa Genoa. The story is about 50-year-old Alice Howland – a celebrated professor at Harvard University who is diagnosed with early onset Alzheimer’s disease.