AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Dear Mary Gordon,
My sister has early-onset Alzheimer's. She is only 59 but is already almost non-verbal (except for two phrases which she repeats) and doubly incontinent. She must be locked into the family home. She is taken for walks several days of the week, varying in length from half a mile to over two miles. She is experiencing problems with what the doctor says is constipation (since she was discharging an orange fluid) and very often indicates that she is experiencing pain in her abdomen, which her husband believes is gas.
Are these symptoms connected to her Alzheimer's? Or are they unrelated?
Thank you very much.
Marilyn
Answer Hi Marilyn,
Your poor sister!!
Constipation is a common problem for people with Alzheimer's disease. It's most likely due to a side effect of medication or other medical or dietary problem, and not due to the Alzheimer's itself. Constipation IS a common complication of some other neurological disorders that can affect cognition — such as Parkinson's disease and Lewy body dementia — which affect the nerves involved in digestion. However, her early onset AD is not likely to be the underlying cause of what is going on with her.
I know you realize that constipation can really impact cognition and mood, and worsen behavioral problems, such as physical aggression. Ironically, some of the meds to treat the mood and behaviors can make constipation worse.
Things her husband could look at include:
Increased physical activity - although it sounds like she gets a reasonable amount for a person into Stage 7. I'm surprised her walking is still as good as it seems to be - that is fortunate.
Changes in diet - both upping fiber by increasing fruits, vegetables or grains or by adding fiber to other food (i.e. they make flavorless fiber additives than can be just added to other food and the person won't even realize it's in there). More important is making sure she gets lots of fluids. She may be having trouble with thin liquids (i.e. they develop dysphagia and have trouble swallowing them without choking). There are commercial thickeners that can help. Not having enough fluid in the diet can really contribute to constipation.
Medications including laxatives. Options for laxatives include bulk forming (i.e. fiber) that can be added to her diet, stool softeners, lubricants like mineral oil, and meds that increase peristalsis (i.e. ducolax). Usually, the approach with laxatives is to start off slow with lower doses of whatever is being tried and gradually get her to the point where she is having a couple of good bowel movements daily to make sure she is cleaned out, and then cut back on them (at the same time, making sure things continue to move and she continues to consume as much fiber and fluids as possible).
I'm a bit concerned about the orange liquid thing. She may even have a fecal impaction which comes from chronic constipation. This is when a mass of dry hard stool has formed in the rectum. It can be so hard and large that it can't pass from the body, and liquid from higher up in the bowel will actually move around it, causing liquid discharge, leakage or even diarrhea. Treatment can sometimes require manual extraction or an enema. It can be really serious - it can progress and become life threatening. It's often a problem for the incontinent person with dementia - an impaction can get going and caregivers not really realize what is happening. An impaction can dramatically impact her cognition, and behavior - plus make her feel really miserable with all kinds of discomfort, bloating, pain, gas, etc.
Her husband will want to talk to her doctors about what the best strategy is. I know how difficult it can be to manage health concerns in a person who can't tell you how they feel, can't answer questions, and can't understand or cooperate with the doctor. You end up being reduced to detective work.
