Absolutely nothing! Just reading the definition of stigma makes my stomach turn and my heart ache. Stigma, as defined by the Oxford Dictionary, is “A mark of disgrace associated with a particular circumstance, quality, or person”. Wow, that is quite a handle to walk with.
Stigmatizing people who are living with dementia is not new. I have witnessed this myself, unfortunately, many times. If a person seems confused or lost; if someone is dressed in several layers of clothing or even having a conversation with themselves, these actions can all be judged by others. I’m not saying that all people are mean. They may just be unaware that these can be signs and symptoms of dementia.
As a caregiver, when you are out and about with your parent, partner, or friend and they are exhibiting some of the above-mentioned behaviours, those same people may be judging you too. “How could that daughter let her mother look like that or how could that husband bring his wife out while she is obviously confused?” Wow, again! I don’t believe that the general population wants you, as a caregiver or a person with dementia, to stay home and not be out in public. However, there are people who need to get some facts instead of being judgemental. Sadly, this can be the root cause of isolation.
We know that there will be many changes in personality, mood, and behaviour associated with this disease and that these changes won’t neatly fit into society’s category of “normal”. This can be hurtful to the person who has the disease. If you recall, from an earlier blog, people with dementia can easily pick up on others’ emotions and body language. You can, too.
Do you ever want to scream, “My mother never dressed like this before”? Why don’t we? I wonder if it is our need to protect the people who are doing the judging or to protect ourselves? When we see someone giving that horrid look, we can either dismiss it or politely educate them. You will be amazed how one explanation can change a person’s attitude! He or she may take that information and pass it on. If we all start talking about dementia, about the good days and the bad; who our loved one was before and who they are now and, most importantly, how someone can help, we will be creating a safer and more secure world for those living with dementia and for the ones that provide support. Isn’t that what we all desire?