Washington DC
People like me don’t fit the image of Alzheimer’s disease,
and we’re usually invisible to the media, the medical system and the
public.
I’ve commented on this before (for instance here and
here),
but I had an especially powerful experience of our invisibility a few days
ago. I’d been invited to participate in
a large panel discussion in a press conference announcing the formal release of
the World Alzheimer
Report 2013. The fourteen-or-so
panelists were each given an embargoed copy of the report a few days before the
conference and asked to comment. As I
looked through the 92-page document, however, I didn’t find a single reference
to mild cognitive impairment (MCI), to people who look like me. True, the conference
conveners should be recognized for giving me and one other person with Alzheimer’s
a place on the panel and the Associated Press recognized for its article. Still, as far as I could tell, we were left
out of the report itself.
Since the emphasis in this year’s report was on
caregivers, I was especially surprised at being left out. People like me, of course, don’t need care
yet, but I would guess that the help and attention we get now will make a considerable difference in how difficult it is to care
for us later.
These are a few of the questions I asked in my allocated
two minutes on the panel:
- I’m at an early stage of my disease and still mentally competent. If I talk openly with family and friends about my diagnosis and come to some internal peace with it, will that change how difficult it will be to care for me later on? What can doctors or nurses or social workers do now that might make it easier for person to find that internal peace and so reduce the future burden on caregivers?
- If I include in the conversation my wider circle of friends and community, will they be able to give me more support now and to give my wife Marja the support she’ll need later on, reducing her exhaustion and allowing me to be kept at home longer? What can we do now to help Marja, other family members and friends to be more able to care for me later?
- Will making financial plans now (while I’m still competent) make later care less agonizing for my family? Is there inexpensive or pro bono help available?
- If my family and I discuss now how I would want those difficult, end-stage questions, to be answered, will that ease their stress when the time comes?
- Each of those questions becomes more difficult when the person with Alzheimer’s is incapable of recognizing their own symptoms (anosognosia). How is that different from psychological denial and how do we tell the difference between the two? Does the difference matter to our care later on? What can we do now to help in the care or preparation for care in the case of someone who doesn’t recognize that anything’s wrong?
The unfortunate fact is that we don’t know the answers
to any of those questions. No one has done
the research. And we won’t know until our
image of Alzheimer’s changes to include people along a wide continuum of
disease. The staggering amounts pain to
caregivers and of money from all of us ($200 billion a year for long-time care
of Alzheimer’s alone) are shouting at us to wake up.
Thank you. That is akk I have to sat, just thank you. This is an incredible blog. Deirdre
ReplyDeleteThank you so much for writing this. I too define myself by my mind, my intellectual nature, and especially fear that loss of self that would come if I were to ever get Alz. Your writing has helped me to worry less about this.
ReplyDeleteYou've written about the importance of early diagnosis. I'd like to add an obligation to others as a reason. Once in my personal life and twice in my professional life unnoticed Alz in other persons had a very negative impact on me.
My present husband was very disappointed and critical of me when I was unable to get along with his "wonderful" mother at the start of our relationship. It took years for him (and other family members) to note with hindsight that her slow descent into dementia had started about the same time as our relationship.
Years ago I worked for a large firm with numerous software projects. I was moved to a key project to help modernize it. However the longstanding project head refused to adopt my suggestions. Others, familiar with his always somewhat abrasive nature, thought this was my fault. Only after I had "failed" and been moved sideways instead of advancing in my career did it become obvious that this man had lost the ability to learn new information and he was forced to retire. (I went to his office retirement party but he didn't recognize me.)
Thank you for your comment and a different perspective. I had not considered the second- and third-order problems with keeping the diagnosis secret. But, of course, you're right.
DeleteThank you for pointing out that there are other types of Alz that don't exhibit the same as that disease. When my husband was first diagnosed with MCI he was also told that this would become ALZ with about a 10 year rate of decline before the "end." Years went by without the same signs as exhibited by ALZ. He has now been diagnosed with dementia with Lewy Bodies which exhibit a somewhat similar cognitive decline but isn't as outwardly noticeable to those who don't know what's going on. I think it's very confusing to lump all cognitive impairments under the same symptoms with the same name as ALZ. With the medicines now available a lot of the symptoms can be modified and the progression of the disease slowed down. However, because of the way LBD exhibits, it's often difficult for people to realize that there is a problem. There are days when I feel confused myself because his behavior can be very normal in many respects and I doubt myself. Other days I find myself wondering what happened, when just the day (or hour) before he was so normal but now exhibits with confusion and appears out of touch with everything around him. "Am I the one 'loosing it'?"
ReplyDeleteThe waters we tread are murky and can have many hidden dangers. We have to walk slowly, shuffling our feet through the dark stuff before we can find the sandbar on which to step out and away from it. As the saying goes, we must tread lightly here.
Thank you for your comment. Indeed, only about 20% of dementia is Alzheimer's, and the early symptoms of each can be quite different. Even more importantly, some forms of dementia (such as those due to "normal pressure hydrocephalus," thyroid disease, certain vitamin deficiencies, and so on) are reversible with appropriate treatment when caught early enough. Others (like vascular dementia may be stabilized with control of diabetes, high blood pressure, salt intake, and high cholesterol.
DeleteMuch of the confusion is due to the fact that up until recently we've not known much about these diseases and so it was easy to lump them together. It's my understanding, for instance, that though Lewy Body dementia and Alzheimer's dementia are different, their presentations can often mimic one another. It's only now that we're beginning to develop brain scans and other specific tests that may one day be able to separate all of these out with some reliability.
David, thank you so much for your insight. Your articles and responses from other readers have been extremely helpful. I only recently came to understand how the two diseases mimic one another yet are very different. I'm not sure how this will play out for us over time so I'm looking for as much insight as I can find. Anything else you can add will be much appreciated.
DeleteAs a caregiver to a loved one diagnosed last year with MCI, I am so very glad that I found your blog. My aunt and I are walking that delicate balance of our changing lives and roles with each other. Her husband of 66 years passed away in April after a 10-year battle with Alzheimer's. Your comments and concerns give me insight to what is going on with her although she denies any problems except for age-related "slowing down." Her biggest fear is to become like her husband in his last days, but she resists following doc's orders to keep active. Thanks for your willingness to share your life, experiences and concerns. You are teaching all of us about life at a deep level so desperately needed.
ReplyDeletePerhaps I am unfairly harsh with the media. Certainly the media have often been important forces in social change. Their concentration on the advanced stages of AD and frequent ignoring of milder forms of the disease are certainly reflections of the wider culture. Perhaps (as with the AP article) they are changing, and perhaps that can lead to a wider change in society.
ReplyDeleteYears ago I followed a story in the NYT's of a man who was a painter who painted his journey into Alzheimer's. Now you with your writing. As a chaplain and a friend to friends who have walked this walk, I say thank you.
ReplyDeleteGreetings,
ReplyDeleteThere is a documentary on HBO tonight about AD. The NYtimes has an article about the movie: Watching Memories Slip From the Mind
By JOHN ANDERSON
Alan Berliner’s documentary “First Cousin Once Removed” follows Edwin Honig and his struggles with Alzheimer’s disease.
Your comments imply that you and family have not yet made financial plans for the future. If this is true, find an elder care lawyer immediately to get information about the financial aspects of nursing home care, Medicare, etc. I cared for both my mother and her sister as they slipped into dementia (fortunately, not concurrently) and learned the vital importance of accurate financial information. Some steps have to be taken early or you lose out. You do want to be sure your illness does not impoverish your wife. The lawyers fees I paid ultimately saved the family thousands of dollars. By the way, I am not a lawyer!!
ReplyDeleteYou are absolutely right about the need for legal advice and financial planning. My wife and I have seen an elder lawyer and are in the process of making those somewhat difficult plans. Our children are also part of the process.
DeleteThanks for point it out.
Hanging by a thread, Love your blog. I am 57 and only caregiver for 86 yr old Mom who suffers from what she calls foggy brain. Things get very confused and she gets stuck on a dream that someone is doing her wrong. This brings anger and aggressive words but so far no actions. It has made it almost impossible for visitors to come any more. Sometimes she thinks the banks are dancing on the table top and on top of her money which she has to grab and run with. I don't know whether to laugh or cry...it is so sad. No matter how much your try to reassure her she just can not accept that things are okay. She has never been a negative person before. I noticed early signs a year ago and this year rapid decline. She refuses medical care....just wants to die.
ReplyDeleteThank you for your story. These are excruciating experiences, I'm sure. I hope you have been able to find a support group for AD caregivers or at least some people you can talk things over with. I also hope that you have some way of getting respite care from time to time.
Delete. I do not have a support group at present but I have heard of one meeting once a month. I will attend next month. I so much appreciate your blog. This does show I am not alone nor is Mother. May God bless you and your family in the days to come. I will be watching from afar.
DeleteGod bless you (more) Dr Hilfiker as u continue to help heal others thru your revealing insight!!! I cared for my father for nine long years while raising my eight children (some of whom eventually helped care for dad while I went to work and gave me some caregivers relief when they were able ....in those days I knew of no support groups in our area so was "winging it solo ".....now whenever I learn of someone who becomes a caregiver I try to research the name of the closest facilities are available ....do u know of a central number where one could call to locate such services?
ReplyDeleteThe Alzheimer's Association can help you find a support group,
Deletecall 800.272.3900,
write: Suite 800 1212 New York Ave NW, Washington, DC 20005
email; info@alz.org, or
visit their website www.alz.org
Alz.org has answered many of the questions you posed to the panel. My local Alz Association also has regular lectures on various aspects of early stage disease. They a long-standing "Early Stage Program" in the Desert SW Chapter of Alz Assn. Hard to believe they don,t have similar program for your local chapter. Your questions are interesting but rather than just question, I'm left with the feeling that you haven't sought info readily available & are implying that your questions have not previously been addressed.
ReplyDeleteAs I mention in my posts, my questions were inspired by the lack of any mention of MCI in the world report. Since the report concerned itself with long-term care of patients with more advanced disease, I wondered whether how we treat a person with early MCI affects their need for treatment in the later stages of disease.
DeleteFor instance, we know that many affected people develop uncharacteristic anger and rage later in the disease. Usually this is ascribed to the physical changes in the brain that change the personality, ie it's not treatable except with powerful psychotropic drugs, But is that true for all the anger and rage that develop? We could offer psychological and spiritual help to people with MCI so that they could better accept their disease. Would that help prevent or change some of the anger that develops later. As far as I know, question has not been researched. As you imply, I am not a person with wide knowledge of the available literature, so if you could refer me to a site or two where this question is posed, I would be grateful. I couldn't find it on the Alzheimer's Association site.
Thank you for commenting.
I found out through my local (Desert Southwest) chapter of the Alz Assoc newsletter. They give regular educational programs on early AD , including programs for early AD patients WITHOUT caretakers. I haven,t looked for it on either the main Alz.org page or alz.org/.dsw. Dutton Teague, recently deceased, who had early stage AD, was on the chapter BOd & helped create the Early Stage Program around 2008.
DeleteMany chapters appear to have the Early Stage Programs. I also highly recommend LIsa Synder's 2011 book:Living Your Best With Early-Stage Alzheimer's: An Essential Guide
Deletehttp://www.alz.org/i-have-alz/if-you-have-younger-onset-alzheimers.asp
DeleteYou mentiond that certain vitamin deficiencies can cause dementia-like symptoms. A couple of months ago my doctor told me that my vitamin D level was 6.7, the lowest he had ever seen. Is vitamin D one of those ditamin deficiencies which could look like dementia?
ReplyDeleteThank you for sharing. My Dad has Alzheimer's. He was diagnosed 11 years ago. His symptoms got to the point where he had to be placed in a facility. In short, if you can tolerate it aricept does work. Exercise and stay engaged. Dad has some bad days but he still recognizes my mother and my siblings. He can converse when prompted. But more importantly, to me he represents hope that we are working toward a cure.
ReplyDelete