Susan Ryan with her husband, Jack, who is living with dementia. COURTESY PHOTO
For the past 30 years, I have been a caregiver supporting family and loved ones living with Alzheimer’s or another dementia. While my experience helping others has taught me many things, one of the most important is kindness and empathy.
I have witnessed how those living with Alzheimer’s and other dementia are affected not only by their symptoms, but also by the negative stigmas surrounding the diagnoses. Often there is an overwhelming feeling of fear surrounding Alzheimer’s.
Alzheimer’s is a progressive brain disease that causes problems with memory, thinking and behavior. When the behavior of a person living with the disease begins to change, loved ones may even begin to experience feelings of resentment towards them as they grow frustrated trying to reconcile the person they used to be and the person they are now. I have observed how this negativity can be infectious, and that loved ones can easily – and unintentionally – spread that negativity to the person living with Alzheimer’s, putting them on edge as well.
People with the diagnosis want to be seen as the person they are. They want to be met where they are and engaged with where they have capacity in that moment, not looked at as the degeneration caused by disease.
Seeing the humanity within the situation is at the heart of my advice. I implore those who have loved ones living with Alzheimer’s to see and love the person exactly where they are today, not wish that they could be the person they were before, or create scenarios of what could happen. Patience and love are paramount, and it’s important not to let the disease stop you from treating them how you know they would want to be treated.
I’ve learned they want to have you meet them where they’re at during all seasons of their journey. Accept them exactly as they are — I call it massive acceptance.
I cannot emphasize enough the importance of educating yourself on the specific diagnosis. Much of the negative stigma surrounding Alzheimer’s comes from a lack of public awareness and understanding of the disease. Without knowing the details about the disease, it’s easy to hear the word “Alzheimer’s” and leap to assumptions, filling in the blanks in our understanding with stories and stereotypes we’ve heard. The Alzheimer’s Association website, www.alz.org, offers resources to help educate yourself on the disease, as well as tips on how to combat the stigma surrounding it.
Learn about the disease. Observe the person exactly where they are, ask loved ones how you can best support them and the person with the diagnosis. Find out the most effective ways to communicate with the person with the diagnosis, meet them there with a heart of love and compassion, and look for what their journey can teach you.