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    Angela Lunde

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  • Alzheimer's blog

  • Oct. 4, 2008

    Should you tell someone about his or her Alzheimer's diagnosis?

    By Angela Lunde

37 comments posted

In a recent posting, the question was asked about whether or not to tell someone with Alzheimer's disease about his or her diagnosis. This is a complex question and one that may surface for many families.

While most would not raise such a question about a diagnosis such as cancer, the diagnosis of Alzheimer's disease seems to highlight a greater feeling of uncertainty in the context of offering what feels 'right' or is in the best interest of a loved one with this disease.

Brian D. Carpenter, Ph.D., an assistant professor of psychology in Arts & Sciences at Washington University in St. Louis, stated that arguments in favor of telling the person he or she has Alzheimer's disease are generally based on a respect for patient autonomy and the value of truth telling felt by families or in professional relationships. He goes on to say that thoughts against disclosure often reference the lack of useful treatments and the uncertainty of diagnosis and prognosis, and escalating feelings of hopelessness.

A recent article in the "Journal of the American Geriatrics Society" reported "disclosure of a dementia diagnosis does not prompt a catastrophic emotional reaction in most people, even those who are only mildly impaired, and may provide some relief once an explanation for symptoms is known and a treatment plan is developed."

I feel that most Alzheimer's patients should be told of their diagnosis, but the timing of the discussion, the extent of details, and the way it occurs are key to a reasonable outcome. What you choose to say or not say depends on the degree to which the person is troubled by or aware of their symptoms.

For instance, if the person is frustrated and says he can't do things he once could, or wonders what's wrong, it's only fair to offer an honest explanation. If these experiences are not acknowledged, persons are left feeling frightened, alone, crazy.

Once told of their diagnosis, some persons may deny having Alzheimer's, but they may acknowledge memory loss. If this is the case, then it makes sense to communicate using those words. Others may deny having any problems at all which is a natural defense mechanism for dealing with a devastating diagnosis, or it may be a symptom of the disease.

Most individuals with a dementia lose insight into their own deficits, or they simply forget that they are forgetful. Be sensitive to the person's reaction. It's probably best to allow the person's reactions to set the tone for further communication about their diagnosis.

If your loved one accepts their diagnosis, provide reassurance that you'll provide ongoing help and support. Remain open to their need to talk about the disease. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance as best you can.

Overall, there is no clear right or wrong answer as to when, how, or whether to tell a loved one about an Alzheimer's diagnosis. I do feel, however, that every individual has a 'right to know'. Yet the delivery of the message can vary widely. The families I have met approach this issue differently, yet, in a way that makes sense for them and the person that they know best and love deeply.

37 comments posted

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  • October 8, 2008 11:02 a.m.

    My mom has been in denial for years about her symptoms, and would fly into rages over the least little thing, let alone being told she has memory problems or Alz. The doctor (a specialist in geriatric care) was never any help with all of the problems mom or the family faced, especially since Mom was an expert at fooling him by putting on her sweetest self when she was in his office. Meanwhile, at home, mom would stay in the same clothes for days, wet her pants and fly into a rage of embarrassment if this was pointed out to her, soil all the furniture and deny her house smells bad, etc. she should have more care at this stage but is not agreeable to any strangers being in her life in any way

    - Sister

  • October 8, 2008 8:33 a.m.

    I think someone with Alzheimers disease has a right to know their diagnosis, just as they would with any other fatal disease. My husband and I shared his disease for 11 years. I didn't tell him immediately to give myself time to accept it, but we always were honest with each other and shared everything in our 42 year marriage.When I told him in early disease we clung to each other and wept, but it helped to bring us closer together so at the end he could say "I love you". My memoir, "Everything Will Be Alright" explains how I was able to improve the quality of his life throughout the Alzheimer's years.It is a love story to remember. Proceeds from my book are donated to Alzheimer's research Keeping secrets damages relationships, especially when it is a spouse.

    - glory read

  • October 7, 2008 9:15 p.m.

    I have an elderly father in law. My husband and I take care of him and keep him on even keel. He is an A-1 hypochondriac. He does have symptoms of Alzheimer's, however , we tell him he has memory issues and at 87 it is OK. He knows that we love him and will always care lovingly for him. In our personal case we feel it is the kinder not easier route of care for him. Our past experience tells us that with him if he has a diagnosis he immediately develops all symptoms of it no matter what. With out a clear diagnosis he recovers from anything within a week. What other approach can our experience tell us to do with him?

    - Mahega

  • October 7, 2008 8:10 p.m.

    I had 2 grandparents who suffered from Alzheimers. They were both aware of their diagnosis since at the time of diagnosis, they were still mentally sound and their doctors informed them of their condition. I know there are a lot of people who are able to get information about another person's health and they then decide first, if they will even let the patient know, and second, how much of the information they decide to relay to the patient. I think that is wrong. If a person is still mentally sound, then they are the only ones a doctor or medical professional should be talking to about any diagnosis, testing, treatment, etc. Everyone has the right to know their own medical condition and to be able to make their own decisions about their health and their life. Alzheimer's steals a person's life and identity. It is vital for that person to know what is wrong with them so they can prepare for their future, get their financial and personal affairs in order and live life the way they want to before this devastating disease takes control of them and steals their life. What if they have children or grandchildren who live in another state? It would so important for them to be able to visit their oved ones and spend time with family and friends while they still can. I don't think someone's medical condition should be concealed from them by any doctor or family member, unless that person is already incompetent.

    - maggie

  • October 7, 2008 5:29 p.m.

    I DEFINITELY would want my doctor to tell me if he suspected I was starting or already have started to have it. That's what I am paying him for - his knowledge! If you knew early enough you would have time to do the legal things necessary for your medical care and financial care and make a will while still considered to have the ability to do so. If their are medicals trials available you could decide if you want to try it instead of just becoming a vegetable and wonder each day it progressed -WHAT'S WRONG WITH ME? My sister was told she had cancer and died even though she tried all treatments possible to satisfy her family. She had the rest of her life planned, her funeral taken care of, her obituary written and wrote letters to her children to be opened after her death. She had time to call and talk to long lost family and friends, to tell some she forgave them. Who wouldn't want a chance to do all that while still able? Instead of waiting until your death or loss of mental ability you could pass heirlooms to loved ones and see their reaction. If the doctor fells you aren't stable enough to hear it he SHOULD call a family member and ask them to bring you back with them so you can help him explain. DO NOT use the patient confidentiality and just ignore it. HELP THE PEOPLE WHO TRUST YOU!!

    - Ruth Ritchie

  • October 7, 2008 3:29 p.m.

    I think it would totally depend upon the character of the person with Alz. Some people would handle it, others would be destroyed by it. It would probably be a good thing if their Dr. or a Dr. whom they trust does it. Sounds sort of chicken i know, but there is a certain amount of blame that goes with the telling. I know. Every rotten landmark of the disease had to be approached by someone responsible, it usually falls to spouse or 1 child. The you can't drive anymore, (which is really a rough one)the you can't manage your own money until you can't be left alone and then on and on. One big thing to do get a Power of Attorney for Business and Healthcare and be sure it includes the disposition of the body in the allowed powers. When it becomes time to have to use it, it is too late to get it. Petitioning the court for Conservatorship is nasty. Deepest to anyone who has to do it.

    - tortie queen

  • October 7, 2008 2:21 p.m.

    I have a son with neurofibronatosis, scoliosis, seizures, and a mother with alzheimers. By being open about every phase of my son's health, we have worked closely together to give him a positive life. When Mom was diagnosed with Alzheimers I took the same reasoning applied to him over the years and immediately told her what she had, what the prognosis could be and where we were going. My mother found a certain degree of confidence in that based on the success I had with my son. She turned herself over to the doctors and my best judgement. While she remembers little of that (and lots of the past) she tells everyone when I come on the scene "She's a bossy ol' bitty, but she knows what she is doing." If you have established a relationship like that with your loved one, you can tell them and take charge.

    - Ethel

  • October 7, 2008 8:02 a.m.

    This is a tough question. I've told my mother that she has 'memory issues' but still the deception is disconcerting to me. Dementia seems to involve a lot of deception; we recently moved my mom to a memory care facility and were told not to tell her about it until it happened (she is midstage). This is very troubling for me as I have always shared everything with my mom. At this point, I'm not sure she would understand what dementia is, while she does seem to understand memory loss.

    - Robyn

  • October 6, 2008 9:16 a.m.

    Well stated Sophia!

    - Angela Lunde

  • October 6, 2008 8:53 a.m.

    Would you want to be told? Would you want to direct your own care while you are able and to have a plan in place for when you're not? It's important to be truthful to be able to plan for what's to come. It's especially important for the person to be able to get all the legal documents in order while he is still competent. No one knows how fast the disease will progress, but it's certain that it will. A Health Care Directive is imperative as is Power of Attorney. Alzheimers care can bankrupt you, financilly and emotionally. You need to be prepared. Find support groups, check out adult day care, have family discussions. Do these things while you can still understand what's going on.

    - Sophia

  • October 4, 2008 9:42 p.m.

    A diagnosis of Alzheimer's is a death sentence! For some people, that will rip out their spirit and I believe that one's spirit plays a MAJOR role in one's health. (How often have you heard stories of a patient's death quickly following the doctor's bleak prognosis?) I think it's important to know your loved one well, and for the carer to make the determination of whether - or how - to reveal this diagnosis. Of course, when the day comes that there is a CURE for Alzheimer's, then the patient can be enjoined to reach for the cure.

    - MountainClimber

  • October 4, 2008 7:44 a.m.

    I think it is extremely important that you tell those with a dementia diagnosis about their disease. You then can plan a strategy, with their doctor, of the best ways to slow down the progress of this condition and enjoy their remaining time. Eating right, not smoking and keeping mentally and physically active go along way in keeping dementia from progressing by Susan Berg author of Adorable Photographs of Our Baby-Meaningful Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals a book for those with dementia and an excellent resource for caregivers and healthcare professionals. http://www.alzheimersideas.com http://blog.seattlepi.nwsource.com/dementiacare/ http://dementiaviews.blogspot.com http://activitiesdirector.blogspot.com http://dementiatips.blogspot.com http://dementia.today.com

    - alzheimersideas

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