Disclaimer: I am not an expert in dementia care. What I am sharing comes from my personal experience and is not intended to diagnose or treat dementia.
Like so many diseases, dementia often affords us a long goodbye to our loved ones. Depending on the kind and progression of your loved one’s dementia, you may have years of vacillation between lucidity and issues with thinking, remembering, and reasoning. This can make it especially difficult for some loved ones of the patient to accept the diagnosis and take steps necessary for the patient’s well-being and safety. Some people can live independently or with minimal support for years after diagnosis; others need more support and care within months.
No matter what, please remember to take care of yourself first. (See this article for more information and resources.) You can’t pour from an empty cup; you cannot care for others if you aren’t taking care of yourself.
What follows are tips I’ve learned throughout the process of my dad’s radiation-induced cognitive decline that mimicked dementia and my MIL’s ongoing journey with Alzheimer's.
Routine is important: regularly scheduled ADLs (like bathing, dressing, and meals) help reduce confusion.
Develop an easy-to-use system for appointments, reminders, to-do lists, etc. It’s helpful if everyone involved in the person’s care can access and update it as needed. If the person isn’t tech savvy, ensure they always have a printout of the latest version. My brother and I have a 64-page Google doc with comments from all my mom’s appointments since late 2022. This has been vital as we try to remember all she’s gone through in the last 2 ½ years to share with new medical professionals who join her team. We also use Google Calendar to track her appointments and who takes her.
Try to allow the person to do as much as possible for as long as possible. As soon as you notice a decline (like teeth not getting brushed, food left in the microwave, etc.), address it with all people involved in the person’s care and implement the necessary support.
Try always to be respectful and gentle. Let the person know what’s going on, step by step, while you help them bathe or get dressed, for example.
Avoid saying, “Don’t you remember?” or “Remember when…?” Instead, try telling a story about the event and see if the person remembers and can share.
Music is an amazing tool! Put on some music you know the person enjoys. Sing, dance, and let the stories associated with the music flow.
Photo albums are another wonderful way to help the person communicate and connect.
Now for some uncomfortable topics.
Start discussions with the person regarding legal and financial matters, options for in-home care, long-term care, and funeral arrangements when they are diagnosed. Having them help plan the future now is less overwhelming than trying to do it when they cannot.
If the person and their loved ones determine that going to a memory care facility is in their best interest, here are some thoughts:
It can take 2-6+ months for the person to acclimate to their new home
We found it helpful to not visit for the 1st two weeks; this allows the person to establish routines and start building relationships with staff and residents without interference from family and friends
Find a facility that the person can continue to stay in if they outlive their money
Set up a schedule of who visits on different days: this ensures the person is not overwhelmed with too many visitors any one day and keeps a sense of routine
Here are links to resources on caregiving:
There is no right or wrong way to handle this situation. Every person and family is unique. It is helpful for the family to provide common verbiage when visiting the person. Even if you’re not 100% on board with decisions being made, do what is in the best interests of the safety and comfort of your person going through the dementia journey.
For example, everyone visiting my MIL when she was struggling with the initial transition said, "I know the change is hard. We love you very much and want to keep you safe. You are safe here." We repeated this like a broken record.
Please share your thoughts and tips with this community!
