Lessening Alzheimer’s Discordance: Five Recommendations
Decreasing discordance is hard but significantly reduces stress and tension.
Posted April 7, 2015
In my last post, I described the phenomenon of discordance. Discordance refers to the very common situation in which someone with Alzheimer’s disease and the primary caregiver don’t agree on the severity, or perhaps even the presence of cognitive or functional difficulties. Frequently, but not always, the person with the illness minimizes or completely denies that there are any problems, while the care partner usually is the one to see the situation more realistically. This discordance of views creates a great deal of stress for the care partner, and indeed for the whole family.
Having identified and described some of the common reasons for discordance in my previous post, here are five recommendations for diminishing this problem that causes so much tension. However, it is important to realize that the person with Alzheimer's will come to a recognition and acceptance of the illness on his or her own schedule. Hopefully these recommendations will hasten that process. Conversations with your loved one about the illness need to handled with great sensitivity, since the individual's self esteem is at stake. But you will both be very much better off once you are able to have open discussions about the situation and its implications for each of you, individually and as a couple.
The concept of discordance, and how to deal with it, is discussed in greater detail in the book I co-authored with Kesstan Blandin, The Emotional Journey of the Alzheimer’s Family.
Five Recomendations for Lessening Discordance between the Person with the Disease and the Primary Care Partner
1. Figure Out Which One of You Cannot Face Talking About It
Perhaps you are one of those couples who avoid talking openly about the disease, and the word “Alzheimer’s” is never spoken, despite years of symptoms. Maintaining that ruse is usually very stressful, and continuing that strategy as the disease progresses becomes increasingly problematic. But it may seem to you that total avoidance is the only way the matter can be handled. Before reaching that conclusion, however, you should carefully consider if avoiding talking about Alzheimer’s is truly necessary for the person with the illness, or if in fact, you are the one who is avoiding the discussion. If so, it is very understandable. After all, you stand to lose an enormous amount to this illness. When the person with dementia is your spouse, you will gradually lose the companionship of your loved one, the person who understood you better than anyone (and now may seem to understand so little). You will gradually lose your sense of freedom; you can no longer come and go as you please, but must always take into account the needs of your partner. Over the course of the illness, Alzheimer's will take a great deal of the money you both had saved for you retirement, and you may lose your nest egg, and whatever degree of comfort and security it gave you. These are just a few of the many losses that you must face. Most likely, you are more able to fully comprehend these frightening and depressing implications of the diagnosis than your loved one with the disease, even if he or she is still in the early stages. So it is important for you to understand whom you are mostly trying to protect - you or your loved one - by not having conversations about Alzheimer’s. You are probably trying to protect both of you, to some degree, which is certainly very understandable. But to the extent that you are avoiding the topic in order to protect yourself from having to feel all of the painful emotions associated with that loss; or if you are not talking about it in order to avoid disagreements and other unpleasantness with your loved one, this is not a good long-term strategy. The harder it seems to face it, the more important it is to do so, and to do so now. Think through how you are going to address it, and start bringing up the subject. In the long run, both of you will feel much less stressed, and much closer, once the realities of the disease are out in the open, and you aren’t wasting precious emotional energy on evading something you both know is there.
2. Conversations About the Illness Need to Happen Regularly.
Once you have decided to open up the subject for discussion, it will be important to bring it up at regular intervals, taking into account the fact that the person with Alzheimer’s is likely to forget some or all of the conversations soon after they occur. There can be a fine line between being repetitive about an important topic, and badgering the person with the disease; certainly one wants to avoid the latter.
3. Make Careful Decisions about When to Raise the Issue.
Some family members may feel that it is better to talk about the disease when everything is going “smoothly”. While that reasoning is understandable, and may work well for some, discussing the problems at such a time may, in fact, not be very successful. If examples of forgetting or other symptoms have not just happened, the person with the disease may simply not remember any of the problems which have previously occurred, and honestly cannot relate to the concerns you are raising. Many people feel, therefore, that the best time to bring up the topic is when there is an example readily at hand. Rather than saying, “Dear, I’ve noticed lately that your memory isn’t so good” at a time when nothing has occurred is not going to be as effective as “Joe, that’s the third time this week you’ve forgotten to take your morning pills”. But it should not be talked about only in times of crisis and ignored at other times, and it certainly should not be talked about when you are feeling any anger about whatever happened, or didn’t happen.
For most people with Alzheimer’s, there also are times of the day when conversations are the most successful; for many, mornings are good and evenings are not. You should try to have these conversations when your loved one is not upset with something, or sundowning, or too tired to take in and remember what you are saying.
4. Conversations Should be Non-Judgmental.
You need to talk about the problem as calmly and uncritically as possible. Alzheimer’s is obviously not the fault of the person with the disease, and it is important for you to work hard to keep your loved one from feeling blamed for his or her illness. Symptoms do not, of course, represent a personal shortcoming or moral failure, and even though your talking about the illness is not meant to be insulting to the person with the disease, it often is viewed that way by defensive individuals with Alzheimer’s. It is useful to talk about "our problem" rather than "your problem". Not only is that very accurate, but it emphasizes the notion that "we are in this together".
5. It is Extremely Important to Focus on Preserved Abilities.
An important principle that will facilitate productive discussion about the illness is that whenever you bring up the symptoms, it is important to counterbalance this with a comment about your loved one’s preserved abilities or characteristics that remain intact. What are preserved abilities? They will be the focus of a future blog entry, but essentially, preserved abilities are those traits or skills that remain, even after much else has been lost to the illness. It might be the ability to appreciate music, or to sing. For others, it might be the continued ability to play golf or pinochle well (even if someone else needs to keep score). For someone else, it might be a personality characteristic, such as a great sense of humor.
Most individuals with Alzheimer’s disease experience the illness as a significant assault on their self-esteem, even if few are able to talk about that spontaneously, or openly. Too often, there is an excessive focus on what is going wrong, rather than on the considerable amount of the self that remains well, even in the later stages of the disease. You should take stock of the preserved capabilities and characteristics that remain, so that these can be emphasized in a way that is genuine, and not patronizing. Doing so can help maintain the self-esteem of the person with Alzheimer’s disease. It can also facilitate the lessening of denial sufficiently so it becomes easier to discuss the illness openly.