Alzheimer’s Caregiving: Not Like Other Diseases (Blog 2/25/25)
Introduction
Alzheimer’s disease is the most common type of dementia. When it comes to caring for someone with Alzheimer’s, it’s an entirely different caregiver journey compared to other ailments. As Alzheimer’s progresses, it can be a rollercoaster ride of unpredictable experiences from one moment to the next. Alzheimer’s caregivers must expect the unexpected, leave the past behind and work on building a new relationship with their loved one each day.
This blog is a brief commentary to help raise awareness around some of the specific challenges involved in Alzheimer’s caregiving. Before we dive in, here are a few demographics about individuals who care for family members with Alzheimer’s. (Center for Disease Control)
Majority are women (two thirds)
30% are age 65+
One fourth are sandwich generation (caring for aging parents and children under 18)
A Caregiver’s Story
Margaret (a woman in her 50s) and Nancy (a woman in her 80s) are sitting on a bench in a small park in their neighborhood. Nancy has an excited expression on her face as she chats with Margaret who is listening intently to her every word. Their conversation goes something like this:
Nancy: My daughter is coming to see me today! She lives a long way from here, but she should be here soon. She’s going to take me home with her when she comes. It’s been a long time since I’ve seen her.
Margaret: I can see how excited you are. While we wait for your daughter to get here, why don’t we have our lunch here in the park? I brought a couple of sandwiches and bottled water for us. Maybe we can have sort of a picnic!
Nancy: Yes, that sounds good. Maybe by the time we finish our lunch, my daughter will be here to get me!
The reality of this scenario is that Margaret is Nancy’s daughter. Nancy has Alzheimer’s disease and no longer recognizes Margaret. Initially, when Nancy’s disease progressed to the point where she no longer knew her daughter, Margaret had difficulty dealing with it. She would push back and try to make her mother understand who she was. This only confused her mother even more and frustrated them both. Now, in her third year as an Alzheimer’s caregiver, Margaret has learned to adjust her emotions and accept the fact that her mom will probably never remember her. A bitter pill to swallow indeed.
But instead of continuing to argue with her mom trying to make her understand, Margaret realized that her energy could be put to better use just being there, tending to her mom’s needs and keeping her safe. Nancy sees Margaret as her best friend and under that guise, Margaret spends a lot of time with Nancy. Margaret enjoys chatting with Nancy about various topics (when Nancy has a good day). She often reads to her mom from the latest mystery novel (her mom’s current favorite genre). They take walks together and engage in other activities Nancy enjoys. It took Margaret a while to get there, but now she treasures every moment she spends with Nancy. But helplessly watching as her mom slowly slips farther and farther away from the life they once had together, is the hardest thing Margaret has ever had to do.
Alzheimer’s Caregiving Presents Special Challenges
Caring for someone with Alzheimer’s is different from caring for someone with other illnesses. One major first step for an Alzheimer’s caregiver is to let go of the idea that they can return their loved one to the person they used to be. The person they knew before the diagnosis and the memories they shared no longer exist for that individual. Caregivers must learn to push past those old memories and see the individual as they are now.
Alzheimer’s caregivers often need to assist their loved ones with activities of daily living (not due to physical limitations as with some other illnesses) because they can’t remember how to bath, dress themselves, etc. Too, the tendency to wander off is a common characteristic of Alzheimer’s, requiring caregivers to keep a diligent watch over their loved ones to protect them from injury or harm.
Communication is another key difference between Alzheimer’s and other diseases. In an article published by Alzheimer’s Foundation of America, Pam Ostrowski provides the following insights:
“With most diseases, caregivers are still able to communicate with their loved ones. With Alzheimer’s, caregivers find themselves answering the same question many times over, which can get very frustrating. The words your loved one remembers on any given day may change.”
Also, Alzheimer’s caregivers must be prepared for a long-term care journey. Following an Alzheimer’s (or related dementia) diagnosis, the average patient lives between four and eight years, however some live as long as 20. (Alzheimer’s Association) Interestingly, most people with Alzheimer’s (80%) are cared for in their own homes by family members or friends. Most recently, family caregivers provided 18.4 billion hours of dementia care.
Take Aways
Caring for someone with Alzheimer’s presents special challenges that are often beyond what one individual can handle on their own. It’s okay to ask for help and in fact it would be wise to do so for the caregiver’s own mental and physical well-being (self-care) and for that of the family member. Someone suffering from Alzheimer’s will begin to do and say things that are completely out of their character. This is part of the disease as their brain continues to change over time.
Alzheimer’s caregivers learn to exercise a great deal of patience, kindness and flexibility. In the scenario we shared at the beginning of this blog, Nancy was waiting for her daughter to arrive, not understanding that her daughter was already with her. By the time they returned home from their park outing, Nancy had forgotten all about waiting for her daughter and her mind had moved on to other things. Margaret’s calm and accepting reaction to her mom’s reality undoubtedly went a long way in keeping her mom from becoming agitated and confused and prevented Margaret from getting angry and frustrated.
Perhaps the biggest challenge for Alzheimer’s caregivers is discovering how to embrace all the complex facets of their loved one – remnants of the person they used to be, along with the new person they have become.
Until the next blog!
Thank you for being here, for reading and for caring!
References
Center for Disease Control, Caregivers of a Person with Alzheimer’s Disease or a Related Dementia, September 3, 2024.
National Institute on Aging, Alzheimer’s Caregiving: Caring for Yourself, July 11, 2024.
Alzheimer’s Foundation of America, How Caregiving for Those with Alzheimer’s Is Different, by Pam Ostrowski.