How do I tell my mother she has Alzheimer's disease?

Lynn de weck asked...

My mom has early moderate stage Alzheimer's. I have known her diagnosis for 2 years now. She does not know her diagnosis. She is totally in denial. Very stubborn and resistant to any help. I don't know if she can emotionally handle being told. Any advice?

Expert Answer

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Although you know your mom better than anyone, telling someone they have Alzheimer's (AD) is not something you need to take on. Do let your healthcare professionals handle telling her the diagnosis just as they would if it were any other disease. Certainly, a diagnosis of CA or Diabetes or heart disease would be reported directly to the patient so too should it be with progressive neurological disease such as AD. The Physician should be the one to give her this most important, life-changing news. Carepartners often become the scapegoats when the impaired family members cling to denial - let your doctor assume that role!

Chances are strong that she will not remember the diagnosis and if you think she truly cannot handle the term 'Alzheimer's disease', then help her deal with the symptoms of the disease by naming it a 'neurological disease' or a 'memory or cognitive disorder'. I am sure your mom is aware that she is not functioning as she once did and may feel inwardly frightened and isolated. Knowing there is a medical reason why she feels and acts as she does, may help her understand that you will remain by her side regardless of diagnosis and even though she continues to deny its existence. Many of the dear people with AD, cling to denial so they do not have to face the uncertainty of a future living with cognitive short-circuits. Admitting to the illness means having to face it and she may not yet feel prepared.

Using the term that you feel will be easiest for her to acknowledge is often easier for the patient to cope with than the diagnosis of Alzheimer's. Do have your physician write the words on a paper that you can show her so she realizes YOU are not making the diagnosis, but a doctor is. Remember that it is HER diagnosis and some explanation, within her emotional range, should be offered. Always prefix it with "at your last appointment, the Doctor said ..."

Again, nothing is more imperative than assuring your mom that no matter what the future brings, you will be there for her.

I strongly urge you to be sure her financial and legal affairs are in order and that you, or an appointed other, have a Power of Attorney. The time will come, with or without denial, when someone will need to make decisions for her - particularly related to her future medical care and living arrangements.

Please take care of yourself.