Recently, I was invited to work with a family on behalf of their father who had a diagnosis of Alzheimer’s dementia. Two sons and a daughter were all on board with wanting and needing to know more about what dad was going through, would be going through and what they would need to do to be prepared. After our introductions, one of the daughters explained to me that Dad was very well known in the community and had a professional position that had touched a number of lives over his 40 year working career. They weren’t bragging but making it very clear to me that they did NOT want anyone to know about Dad’s condition. In short, they were ashamed that this once well respected academic now had trouble finding his way to his bedroom in his own house.

As I have shared with you before, Alzheimer’s disease is not a respector of persons. From National Leaders of countries, psychiatrists, teachers, to farm workers to housewives, this disease, can and does, impact men and women from all walks of life.

Alzheimer’s is a progressive disease and the early symptoms are often very subtle. In the early stages of the disease, your loved is very aware of the deficits he or she are experiencing. As a result, they may be feeling ashamed. Am I going to embarrass myself? Or my family and children?”Will I become a burden to my significant other? With this kind of thinking, shame can translate to denial and that’s never a good thing. They won’t share their experiences, they won’t visit the Dr. to get an appropriate work-up, they become less social and all of this impacts their quality of life..

From the families perspective, shame can have disturbing consequences. They won’t let their loved one socialize, they don’t inform the appropriate physician of what’s happening resulting in their loved one being denied medications that could go a long way to improving their quality of life. They aren’t learning about critically important resources that could help everyone. They aren’t building a support system, doing long term planning or even giving their loved one a chance to participate in clinical trials.

I was speaking to a physician once at Mass. General and he said that his job was to keep us as well as he could until what ever was going to “get us, gets us.” Whether it’s heart disease, diabetes, COPD, Alzheimer’s disease, a stroke, cancer etc etc. Alzheimer’s doesn’t deserve to have a stigma attached to it.

If you and members of your family feel there is a stigma and shame attached to your loved one with Alzheimer’s or other dementias, allow me to help. 1. Be open and direct about the illness with others. 2. Get the facts on the illness and give the facts to others. 3. Stay connected with friends, family and resources like support groups and develop a network of those who want to be supportive. 4. Don’t get discouraged. Some may distance themselves from you because the don’t understand. Help them. 5. Become a voice or advocate to raise awareness.

It’s been said that one in four diagnosed with Alzheimer’s hide their diagnosis. Why? Shame and Blame. There’s no place for it. The real problem is that if hidden well enough, it’s usually a crisis that exposes it. A crisis like a car accident, getting lost or making a mess of the checkbook.

I’ve never liked the word dementia. Remember the evil beings in Harry Potter? They were called “Dementors” and they’d suck the soul out of you. Nice. If you’re a caregiver, make sure that your loved and you aren’t experiencing shame or blame. Yes, there are some things we can do to fight off dementia but the majority of those with the diagnosis today spent most of their life healthy and fit.

Questions? Email me at repe@careforcaregivers.org