In Medicare data from years 2008-10, in clinical practice with interviews with people who were being treated for Alzheimer’s disease, one study concluded that just 45 percent of physicians told their patients they have Alzheimer’s. Some physicians felt it would be too traumatic and too confusing for patients to hear this news.
There are many pros and cons in informing a loved one about their diagnosis. A family member or caregiver might feel that it would cause the affected person undue stress or set in motion a sense of hopelessness. Further, some might think it makes no difference whether to tell a loved one of the real diagnosis or not.
Whatever the diagnosis, the person has a right to know.
If your mom has been experiencing memory loss or other symptoms associated with Alzheimer's disease, then most likely she intuitively suspects something is wrong and, therefore, has a right to know the truth and be fully informed of the situation.
Although you may dread telling her, it might serve a form of relief for her to openly talk about her disease and the life issues she is facing. Additionally, withholding the truth about a diagnosis of Alzheimer's or dementia could lead to paranoia later and cause a breach of trust between your mom and yourself.
Once she knows, it is helpful for you and the family to come together to be supportive and develop a plan of care.
Researchers have found that the fear of abandonment is paramount over any other fear associated with the disease, so your mother will need lots of reassurance that you will be there for her the whole journey. Educate yourselves about Alzheimer's disease. Talk to other caregivers. Let her know that there is nothing she could've done to prevent it. Allow her to ask questions, make personal decisions and just speak openly about the diagnosis, if she would prefer.
Try to take an upbeat approach once the diagnosis is made, as your optimism can be a source of comfort to her. Assure your mom that she is not alone, that she will be supported, that many other people suffer from this brain impairment and that there remains a lot of quality of life and time to spend together.
And do spend that time together. Find the things your mom most enjoys and experience those with each other, building her self-esteem and promoting a sense of purpose in her life. Have her write in a journal every day, expressing her thoughts and feelings freely and without judgment.
Above all, be empathetic and listen to her fears and concerns. It might be helpful for you to join a support group or participate socially with other caregivers and people sharing the same journey.
As the disease progresses, her anxiety of the diagnosis may lessen as she will “forget” she actually has the disease or even the term, “Alzheimer’s.”