Hello,

I am a young filmmaker currently working on a short film which features a character in the late (last) stage of Alzheimer's disease, and I would very much appreciate your input/insight.

I've done a lot of research in order to portray it as accurately and respectfully as possible, and it is my understanding that there comes a point in which the patient becomes unable to eat due to difficulties in swallowing. I am unsure, however, how this difficulty would actually manifest itself. I apologize in advance if this is completely obvious, but I really want to make sure I get this right. So, my question is, does the food (or water) just come out of the mouth? Or does it only imply that the swallowing takes longer and is painful but ultimately does happen? In case it does just come out of the mouth, would that happen instantly or would it take a little while?

As written on the script, the caretaker of the patient unsuccessfully tries to spoon-feed him mashed potatoes, and give him water through a straw. Would those three things (feeding mashed potatoes, using a spoon to do it, and giving water through a straw) still be advisable for a person in the last stages of the disease?

Furthermore, before feeding him, the caretaker will be seen moistening the patient's lips. What would one use for that? Just a moist towel? Or is there anything else advisable?

Finally, would it be accurate to say an Alzheimer's patient looks older than he actually is?

Thank you very much for taking the time to read this. I really hope someone here can help me.

Dear Short_film, my name is Tom. I have Alzhiemer's related dementia and volunteer on this site. I appreciate your intentions and will help as much as possible. Please be carefull and refain from any sales via this site. This is a non-profit organization and we can't endorse any product.

I can only respond to your last question, "Finally, would it be accurate to say an Alzheimer's patient looks older than he actually is?" Absolutely false! I'm 60 and don't appear to be more than 50 years old.

Good Luck with your research!

Thank you for your questions regarding Alzheimer's disease. The Alzheimer's community will appreciate an accurate portrayal of an Alzheimer's patient in a movie, so it is great you are asking these questions. If you have any further questions call our help line at 800.272.3900

To answer a few: Yes swallowing and eating are abilities someone with Alzheimer's can loss in the end stages. The aspects of swallowing that could be affected include the muscle movement of the throat, chewing, and aspirations while eating. Persons with Alzheimer's who struggle eating have problems with inhaling while they are trying to swallow causing difficulty this may cause choking. In some situations, families try to give food and drink from a straw, but the person may have also lost their sucking ability. If this is the case families then encourage liquids through a cup with assistance.

Mashed potatoes, Ensure and other nutritional drinks, and other foods that do not require a lot of chewing but offer nutrition are used for such patients. Spoon feedings, or otherwise- whatever method works. This is not going to be the same for each patient. As the saying goes, one person with Alzheimer's is one person with Alzheimer's.

Also, a Physical therapist or Occupational therapist with experience in Alzheimer’s can be brought on the case to help teach families how to influence swallowing, or what to do to make sure eating and drinking continue to happen despite the change in abilities.

Here is a link to a document about eating (includes all stages) http://www.alz.org/national/do...opicsheet_eating.pdf

This link will direct you to a late stage brochure which touches on other parts of late stage care in Alzheimer's disease.
http://www.alz.org/national/do...ochure_latestage.pdf


As Tom said in his post, a diagnosis of Alzheimer's disease will not make the person look older. However, if the person's health is failing or changing as a result of the Alzheimer's disease or other illness, there may be a change in the person’s appearance. For example, if the person with Alzheimer's cannot walk, they may loss muscle mass and their physical appearance would then change.

I hope your movie will help create more awareness of this devasting disease.

Bests,

when my mom started to have trouble swallowing she had trouble with liguids and would start to cough after drinking. often liguids become a problem before solids. thickit was added to liguids to improve her abilities. I dont think it was very visual. What I have seen of people with greater problems is spoon feeding of pureed foods, and the reminding the person to swallow, and the looking in their mouth to make sure the food was swallowed. maybe you should go to a nh and spend some time. Much better to learn for yourself.

Frankly I am leary of a solicitation for information for use in an alleged short film. Others have approached this message board for our input but have shown dementia patients in an unflattering light in a video. If you want to get appropriate information from us you should be cleared by the Alzheimer's Association. I would think you would want to credit them in your work.

Iris L.

Thank you to everyone for the kind input. I am of course not looking to sell anything, I am just trying to get a sense of this so I can portray it as accurately as possible.

Both your accounts and links to reading material have helped me greatly, and we are definitely planning to visit homes in our area in the near future, but we wanted to be as informed as possible before going.

Iris, I completely understand your hesitance. Unfortunately, I feel that other than writing it, there is no way for me to actually prove to you through this medium that my intention is not to treat this in a negative light. I'm not sure I would be doing the research if I intended that. I only asked hoping someone could shed some light on the subject, thankfully some did, but I completely understand if others choose not to.

Furthermore, I'd like to clarify that the disease itself is not the main focus of the short film. It's only a small part of the narrative.

Thank you again to everyone. If there is any additional input from members of this forum I would love to read it.

Problems seen in late stage, no longer able to use silverware, aspiration during the swallowing process, food refusal (clenching the mouth when food is offered, turning the head) spitting the food out, chewing for a long time but not swallowing, requiring prompting to swallow, etc. Volicer has an article on this. "Eating Difficulties in Patients With Probable Dementia of the Alzheimer Type"

You should watch the following video:

Terra Nova Films. (1993 a). Alzheimer’s disease: natural feeding techniques. [Video.] Chicago, IL. (Produced by the U. S. Deptartment of Veterans Affairs, Ladislav Volicer)
http://www.terranova.org/Title...ProductCode=ADNFTVHS

My father, who just passed away in June. Did not have so much trouble swallowing as he did not liking food. He preferred stronger tasting food like tacos, pizza, spagetti, chocolate, he refused any vegetable except for onions.

He also did not look older than his years, he was 77. He looked thin because of the advancement of AD. He did well with supplementary shakes as stated but he didn't like bland food like potatoes even though that was one of his favortes prior to the AD. One of the final aspects of my dad's AD is that he had muscle pains and spasms. I didn't notice if this affected his swallowing. At the end he mostly refused to be fed and if we could get him to take something from a spoon he did okay with it. The cup with a sipper lid worked best so that is the method we used to feed him.