When Patients With Advanced Alzheimer’s Get Pneumonia...

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September 23, 2010

Up to 90 percent of people in the advanced stages of Alzheimer’s disease must be cared for in a nursing home at some point during their lives, and many of those are prone to serious infections like pneumonia. A new study in the Archives of Internal Medicine looked at the antibiotic treatment that Alzheimer’s patients with pneumonia received. Researchers found that while the drugs can prolong life, in many cases it could prolong suffering. YNNEX7XYHUJJ

The findings underline the importance of proper end-of-life care for people with Alzheimer’s, a disease that takes its toll not just on the brain but on the whole body. Indeed, Alzheimer’s is the seventh leading cause of death in the United States, accounting for nearly 75,000 deaths yearly and exceeding the deaths caused by diabetes or pneumonia and flu.

The researchers, from Rush Medical Center in Chicago, studied patients with advanced Alzheimer’s and other forms of dementia in 22 nursing homes in the Boston area. Over 40 percent of the patients had at least one bout of pneumonia during the 18-month study period. Antibiotics did prolong survival in patients with pneumonia. But overall, it did not make patients feel more comfortable, and in many cases increased discomfort.

Antibiotics can cause well-known adverse effects like allergic reactions and severe digestive upset. But patients who received antibiotics also tended to suffer more pain, for a variety of reasons. In many cases, patients had to be transferred to hospitals for intensive treatment. There, antibiotics often had to be administered intravenously, leading to painful skin infections. The procedure might have to be repeated multiple times, as agitated patients tore drug lines out of their arms and the I.V. tubes had to put back in again and again.

In a commentary accompanying the study, Dr. Anna Chang and Dr. Louise Walter of the University of California, San Francisco, and the Veteran Affairs Medical Center in San Francisco note that patients and their families should carefully consider what it means “to treat pneumonia.” While most of us would not hesitate to pop an antibiotic if we got pneumonia, that may not be the best option for a frail and disoriented person in the final days of their life.

They call for greater awareness of all end-of-life issues for those with late-stage Alzheimer’s. They note that nursing home staff are not adequately educated about the fatal course of Alzheimer’s, which is the seventh leading cause of death overall. In one study, for example, only 1 percent of nursing home staff believed that residents with advanced dementia had a life expectancy of less than six months, when more than 70 percent actually die within that time frame.

They further note that in many cases, patient and family wishes about end-of-life care is not well understood or followed by medical staff, aggressive treatments like tube feeding are overused, and medical problems like pain, bedsores and aspiration of food is not properly managed. Less than a third of nursing home residents who die of advanced dementia receive hospice care, which manages pain and usually makes patients more comfortable in their final months.

By ALZinfo.org, The Alzheimer's Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer's Research Foundation at The Rockefeller University.

Source: Jane L. Givens, Richard N. Jones, Michele L. Shaffer, Dan K. Kiely, and Susan L. Mitchell: “Survival and Comfort After Treatment of Pneumonia in Advanced Dementia.” Archives of Internal Medicine, July 12. 2010; Vol. 170(13): pages 1102-1107.

Anna Chang, M.D., Louise C. Walter, M.D.: “Recognizing Dementia as a Terminal Illness in Nursing Home Residents: Comment on "Survival and Comfort After Treatment of Pneumonia in Advanced Dementia."  Archives of Internal Medicine, July 12, 2010.  Vol. 170(13): pages 1107-1109.

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15 Responses to When Patients With Advanced Alzheimer’s Get Pneumonia

  1. Lynne Fitton says:

    My mother recently died from broncopneumonia and endstage Alzheimer’s Disease. I had looked after her in my own home for 8 years but she actually died in a nursing home where she was staying for respite care whilst I was on holiday (although fortunately I was able to return and spend every moment of the last five days of her life with her so she was not on her own and was very appreciative of the 24 hour nursing care provided to Mom).

    I think it is most important that before an AD sufferer reaches endstage, the family should discuss with the general practitioner what is going to happen once the endstage is reached. He should discuss with them all the possible scenarios at end of life and help the family to make the right decisions for their loved ones. He should point them in the right direction if they feel they need more information such as from Alzheimer’s Disease and hospice organisations. They need to know what is ‘good practice’ to help them ensure their family member receives the correct care and empower them to make decisions at a very difficult and emotional time. Not everyone thinks about what is going to happen at the end and I feel it must be up to both general and hospital practitioners to ensure these issues are discussed with families coping with Alzheimer’s Disease.

    I was fortunate to have had a very good GP looking after Mom who helped me look at end of life issues well before this difficult time arrived and discussed what to do about antibiotics, fluids, DNR etc. It enabled me to feel very in control of what was happening to her and she had a very gentle peaceful death.

    • lisa s says:

      im scared for my mother she is coming home from arizona i have no clue how to help her

      • Becky says:

        I just lost my Mom from dementia. She got pneumonia at the nursing home and now I am not sure I made the right decisions as how to treat her. How do we get rid of the guilt that we did what was best for them

      • Jo says:

        Becky,
        I’m going through that same guilt. My Mom was in nursing home as I could no longer take care of her by myself as I had done for years. She recently passed away in the hospital from aspiration pneumonia. The guilt is eating me alive. If I had just somehow found a way to keep her at home again.

    • Zee says:

      Hi all…just commenting on the fact that my 82 year old father has dementia along with pneumonia. If anyone has any advice on further treatment and places to go, we would love to hear it! My father was my best friend for years, and it is just tough to see him go through the phases of dementia. He is wearing depends, and has a very tough time with remembering anything short term. HELP??? I think we are in for a long hall…what do I do?? Thanks all……Zee

  2. Lynne Fitton says:

    Im so sorry I have not been back to this site since I made the above post. I hope by now that you have lost some of your fear for caring for your Mom – and it is a huge responsibility, looking after someone so important to you and having to make decisions on their behalf. All you can do is your best – show all the love you can (and here – as normal communication dwindles – physical contact, such as hugging, holding hands, kissing, gentle caresses, etc, is so very important) and talk to as many people, your mother’s doctor and organisations in the field of Alzheimer’s Disease that you can. Arming yourself with as much knowledge as you can will help you feel more confident in your ability as a carer and keep you informed in advance of the changes you and your Mom will experience during her AD journey.
    Make sure you don’t avoid the difficult decisions that will need to be made re end of life care. If you look at these issues well in advance, you will be prepared and know what to do at a very emotionally stressful time. If you are lucky enough to have family support to help you in your Mom’s care, use it and talk together to help you find the answers right for your Mom.
    Dont forget too in the very early AD stages you can discuss simply with your Mom issues concerning her will and end of life wishes. If beyond this stage, then you and your family will have to base your decisions on what you think your Mom would have wished for and put what’s best for her before your own feelings and wishes.
    I wish you the very best in your journey – it’s not easy, there will be times when you wonder how you can carry on (and you must research and use all the help and support you can get) but it is a very special time where you can show your love for your Mom as she gave to you, and it creates a very precious bond between you which will help in the years to come.

  3. Yousuf says:

    Hi all, my mother has also suffered from these diseases. I believe my mother had the disease for so long even though it was discovered by doctors about 14 months ago. My sister has been the care taker, which took a toll on her. but within months of being under medication, she lost her speaking power, except repeating one or two words. Eventually she started walking repeatedly for 18 hours, sitting only for a second and walk again and again. Because i have a big family we were able to keep our eyes on my mother. But recently she lost her walking abilities and because she has little to no memory, as well as dimentia. As she sits or lies on the bed she drags herself, thinking she is walking>? We had to take mother to our local hospital. She has been there for 6 days but on the 4th day they discovered she has fever and aspiration pneumonia. It is very painful for us to see our mother go through this. After discussing with family and doctors, hospice care was not an option but hospice care at home. We do not want tube feeding where tube feeding does not prolong life. I know something will happen eventually, but preparing or expecting something to happen has been the hard part.We pray to god do the right think, because my mother does not take any food, liquid or not, does not respond and now pneumonia…I just do not know what is going on and how long this will last…:(

  4. miriam says:

    my dad was diagnos with dementia 4 yrs ago. He been with us, he was walking with help of a cane, he would hold his coffee mug on his own to drink, would feed himself with a spoon, he would talk about things that were not there, he would remember thing from long ago, at first he would pick up chairs, computer put them on the floor, turn the bed around at late hours of the nite, then all this stop with a medication name Namenda, he was more calm, not so agressive, but then he started to withdraw without warning, his eye sight got very bad, and the last, he got phenomia, was in hospital, at the er his right lung collapse, he got seizures he never had in his life, fevor of 103, infection in urine, then was in icu for two weeks,

  5. Irene Serwa says:

    My mother is, I believe, at the endstage of Alzheimer’s. I am trying to find out information about what is the “normal” day and what specifically to expect will happen in the future. Right now my Mom sleeps or lies on the bed most of the day. She will try to get up but really has a lot of pain and difficulty doing it alone. At Christmas time someone gave me a package with Santa’s bells as a decoration. The bells proved to be a Godsend as we tied them to her walker and as soon as she starts to rise, we are able to get to her to help her. Is it normal for patients to sleep or lie in bed for so many hours? I would appreciate learning more to be prepared. Can anyone help or direct me to where I might find this information? Thank you and God bless you.

    • Allison says:

      For all those who have a lived one suffering from Alzheimer’s, please read “Just Being Alice.” It truely give us “normal” people a glimpse of what our loved ones are going through, through their perspective.

    • Saroni says:

      Call Hospice! My mother is in end-stage Alzheimer’s now and we first discovered Hospice when my grandmother had lung cancer. They will give you all the help and information you need. I find they are better than her doctor or local nursing facilities because they are involved with so many people with this terrible disease. They can get you what ever equipment you need, (wheelchairs, lifts, etc.) as well as disposable pads and diapers. They will also take care of medicine refills. Every Thursday they call to make sure I have everything I need for the weekend. You have access to your “team” anytime.
      My mother is no longer able to walk or even stand but I have a nurse aid provided to bathe and wash her hair every week. You can request as often as you need and they have volunteers to sit with her if I need to do errands. The support is incredible! You don’t pay a dime for it either. Medicare takes care of it.
      I can’t tell you the peace of mind I have since I called them.

  6. Mike says:

    Becky,
    When a late stage Alzheimers patient dies, regardless of the designated “cause”, I think it is valuable to accept that ultimately it was Alzheimers that killed them. Absent a difinitive directive from the patient that they should have their life prolonged at all costs, and that family should disregard quality of life issues, it is absolutely reasonable to avoid the complications of curative treatment and allow for the patient to remain as comfortable as possible. If in following that course of action, mortality is hastened, it does lessen the reality that alzheimers was responsible for death.

    We all have our own reasons to feel guilty about our “performance” in treating a close family member afflicted with Alzheimers. It is one of the most demanding and draining experiences imaginable – and no one avoids some mistakes in their efforts. However, no one should ever feel guilty about choosing to keep their loved one comfortable over the possibility of briefly extending “life”, despite very real and negative impacts.

    • annette marcano says:

      My husband had severe Alzheimers. Diagnosed at 57 died at 62. Had him at home then had to admit him in the nursing home for his safety. In the beginning he told me never to leave him and I promised I would’nt. As soon as he went to the nursing home they medicated him to control him. He was very spirited and proud of his heritage (puerto rican). I had a little t.v. in his room were he could watch non-stop videos. I also visited him everyday to make sure he ate and love on him as much as I could. After eight months of being medicated He started to lose weight and eventually could not walk and needed a wheel chair. He still tryed to keep himself by being busy and would laugh and be silly. He loved to dance and sometimes would break out a dance move in his wheel chair. One day he developed a fever and could not swallow food. This led to him wanting only to lay in bed. I was in denial and tryed my best to get him to eat yogurt, water anything lite. His skin started to look different and he would grimace in pain when he coughed. He had pneumonia. The nurse asked if I wanted to see if he would eat if we put him in his chair. I wanted to try. As soon as he got up he could not breath and he looked at me in pain. The nurse tryed to give him oxygen to see if that would help. Then it was evident that he needed something for pain. The nurse gave him morpine which helped him go to sleep. They left. He was in his chair breathing so heavy. Then his eyes were open thought that was odd. I closed them. They opened again. Then his breathing was light. Once again thought that was odd. Then it stopped. I jumped up got the nurses they confirmed my baby was gone. I screamed and cried then got my composure for our daughters who came in the room in shock to see their dad was gone. We now are in peace knowing there is no more pain, no more tears. He is whole with a new beginning in heaven dancing with all loved ones and Jesus!

  7. annette marcano says:

    The experience of all the ups and downs living with Alzheimers, gave me a new perspective in life. A wonderful husband alot of precious memories. My Angel in heaven.

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