Home / Featured / The 5 Most Common Problems in Late Stage Alzheimer’s Disease

The 5 Most Common Problems in Late Stage Alzheimer’s Disease

During the latter stages of Alzheimer’s disease, affected persons become completely dependent on their caregivers for survival.  Interestingly, most people do not die from Alzheimer’s disease itself, but from a complication or secondary effect of the disease.  Here are the five most common (and sometimes preventable) complications of Alzheimer’s:

1.  Falls

Falls are the most common cause of injury in older adults both with and without Alzheimer’s disease.  This is because there are so many causes of falls including muscle weakness, heart trouble, joint instability, visual disturbances, and sensory loss.  Alzheimer’s patients are particularly vulnerable to falls because they frequently don’t recognize their own limitations and lack the judgment to act safely.

It’s easy to recognize fall risk.  It’s harder to eliminate the risk.  Many interventions can mitigate fall potential including physical therapy for strength and balance training, occupational therapy for environmental modifications, low vision strategies, and cognitive compensation, and alarms/bells/whistles to alert caregivers of unassisted movement- but there is no substitute for supervision and engaging in activities to decrease fall risk.

2.  Skin breakdown

Decubitus ulcers (aka bed sores) are largely preventable.  Sometimes the caregiving situation and the medical complexity makes proper skin care difficult.

Skin integrity depends on many factors- positioning and nutrition being major influences on the likelihood of a pressure sore.  Here’s how it works:  bony prominences, like hip and butt bones, push down through the tissue and compress blood vessels that supply the area with oxygen.  Good nutrition helps to keep our “seats” padded, but prolonged pressure against those bony areas will eventually lead to skin breakdown.  And it can happen quite quickly.

As able-bodied-and-minded people, we shift our weight quite regularly.  We never just sit or lie still.  Our bodies tell us when it’s time to shift our weight to the other hip, cross or uncross our legs, or lean forward and back again.  We are constantly in motion, even when we think we are still.  These impulses keep our skin safe.

Late stage Alzheimer’s patients cannot respond to those cues.  They require others to reposition them frequently, while avoiding other skin damaging actions like skin tears and friction/shearing.  In other words, Alzheimer’s patients require frequent change of position, but this should be done carefully and gently.

3.  Contractures

A contracture is a chronic loss of joint motion caused by shortening of a muscle or tendon.  In late stage Alzheimer’s disease, contractures of the knees, elbows, and hands form mostly from lack of movement- enhanced by neurologic changes in muscle tone making joints more resistant to passive movement.

Many people in the later stages of Alzheimer’s disease sit… a lot.  They stay in one position with their knees and elbows bent.  Frequently, if they are seated in a wheelchair with sling upholstery and poor pelvic support, their thighs and knees touch.  They may even pull their arms in tight against their chest if they feel cold.  Sitting in this position for several hours, and then being transferred back to bed curled up in this same position, leads very quickly to limited joint movement.  This makes it very hard to clean, feed, and dress someone whose limbs don’t move well.

Prevention of contractures is easy, but it requires diligence and consistency.  Simple range of motion exercises- moving the elbows, fingers, wrists, shoulders, knees, and ankles to the limits of their range- will prevent contractures and painful stiff joints.  If someone becomes resistant to range of motion, which is common if a person is confused or in pain, then there are ways to “trick” them into active movement that can be helpful.  We’ll save those techniques for another post.

A good wheelchair with appropriate limb, trunk, and pelvic support, and physical activities that engage the person to reach, shift position, or use his or her hands can make a tremendous impact.  Frequent range of motion, encouraging extension in bed, and providing medication or modalities for pain modulation can be all it takes to prevent contractures.

4.  Aspiration

When someone with Alzheimer’s disease dies from pneumonia, aspiration is usually the cause.  Aspiration is the inhaling of a substance or object into the lungs, and pneumonia is the infection caused by the fluids or particles that were inhaled.

Aspiration pneumonia can be prevented through proper positioning for safe swallowing.  A person should never be fed while lying in bed.  Ideally, the person should be sitting upright with the chin tucked slightly to prevent food or liquid from dropping down the airway and where gravity can assist the neck muscles in swallowing the food.

Food texture and liquid consistency also play a huge role.  If the food cannot be chewed properly, or if the liquid is thin (like water), it can easily slide down the wrong pipe.  Thickened liquids, like nectar or honey consistency, are actually easier to manage for someone with swallowing difficulties.  A speech therapist can help determine the swallowing status and which food consistencies work best.

5.  Dehydration 

Dehydration can sneak up on the unsuspecting Alzheimer’s patient and the well-intended caregiver.  Obvious conditions can lead to dehydration, like hot weather or a flu bug causing vomiting and diarrhea.  Less obvious contributors include medications, insufficient fluid intake, or electrolyte imbalances.

Dehydration can cause confusion, dizziness, low blood pressure, rapid pulse, and weakness.

Prevention requires vigilance, a steady intake of a variety of fluids, and frequent monitoring of symptoms that could be attributed to dehydration.

 

 

 

 

 

About admin

37 comments

  1. Very helpful information — thanks and keep it coming!

  2. Skin breakdown can still occur because of the fragility and frailty of the person and their overall (very poor) health status in the end stages of dementia; it is not always “100% preventable” – comments such as these are not always helpful to family members who are caring for people with dementia. Perhaps right in theory only but not in the real world – if that makes any sense.

    • Kim, I would concede that 100% is not realistic, and I want to be responsible with my opinions. So thank you for commenting and reminding me to be careful about what I write in terms of realistic expectations. But I also want to be a voice for someone who can’t say “Hey, my rump hurts. Could you roll me over?” I also want family members to know what to watch for and advocate for care that is above the current standard. Frequently precautionary measures like mattress overlays and heelbos and turning schedules are implemented too late, and folks aren’t even aware that those measures exist. The “real world” reality is not enough. We need to raise the bar.

      • First of all, my mother’s dementia prevents her from cooperating with therapists and exercises. Second of all, nobody really wants to spend the time to do the turning and the exercises in the nursing home she is in because they would rather play with their phones, yell and scream and laugh in the halls and leave early. Third and last, nobody told me about contractures until it was too late and never offered to tell me how to do the exercises with her. There has been no nurse manager for months and the director of nursing is a joke.

        • Becky, I totally hear you. That environment sounds very familiar and I am so sorry that your mother is not getting the care she deserves.

      • Amen… it’s up to us to be well informed and this is spot on advice

    • My mom is in late stages of Alzheimer’s and my dad is there morning noon and night for feeding He makes sure she is turned every 2 hours The staff at the nursing home where she is is absolutely wonderful. They all not only take care of my mom and my niece who happens to be there also but in bad weather the nursing home has made accommodations for my dad so he does not have to drive I am truly thankful for all of them and even though the patient staff ratio is very high they are all always working diligently to care for every patient. I never see them just sitting and doing nothing. Despite the great care my mom has developed pressure sores and because of her barely eating I do not think these will heal. She has been in the nursing home almost 4 years. the last year she has deteriorated quickly. According to the hospice nurse my dad is the only one she reacts to. They have been together almost 64 years.

  3. I think it is wrong to use the word “preventable” because often, in spite of the best of efforts, these problems do occur. Skin does get frail. Patients refuse to cooperate for range of motion exercises, and beyond a point, they cannot be cajoled–that is cruel, too. “Tricking” can only work when patients are not yet fully immobile. And aspiration is not just about food going into the lungs, it is also saliva. See: http://en.wikipedia.org/wiki/Aspiration_pneumonia

    It is good and useful to suggest what caregivers can do to reduce these problems, but please don’t use words like “prevent” because that implies that caregivers can, if they care properly, actually prevent them, is cruel to persons who are slogging away for years, their lives on hold, doing all they can for the comfort of their loved ones. I took care of my fully bedridden mother for several years (she was completely bedridden, could not speak, did not move on her own, could only take liquids, and care was 24×7 and at home). Ends come, and hers came, too.

    • Thank you for your comments. I hear you loud and clear, and by no means am I trying to add stress and guilt to caregivers who “slog” through this day in and day out. I’m sorry for that offense.

      This post was written, in an admittedly idealistic and disapproving tone, in response to the substandard care that many of my readers had experienced with their loved ones in long term care settings. Unfortunately, many folks are not cared for as devotedly as you cared for your mother, and suffer unnecessarily as a result. Much of the training I do warns caregivers of the potential (not always inevitable) complications of the disease. I think in trying to set the bar for competent care to its highest level, I made a poor word choice.

      If “preventable” lies at one end of the spectrum, than “inevitable” must be at the other. As you said, there is a long, grueling in between where ends do come. I am so sorry for your loss.

      I will sincerely try to be more sensitive to this going forward. Believe it or not, the hands-on caregivers of Alzheimer’s disease are my personal heroes.

      Thank you again for your feedback.

  4. Hi,
    What are the tricks to get the range of motion exercises?

    • Have some fun here… think about what makes you move reflexively. Batting a balloon, reaching for a cookie, kicking a ball, hugging a loved one. But in the later stages, closed chain activities may work the best- resisted pushing and pulling using a wand or hand to hand- hold to stretch at the end ranges. Also, massage and deep pressure along tight tendons allow the joints to relax a little. What else?

  5. This information really is not helpful and makes caregivers like myself feel bad or negligent. Physicians and Therapists will tell you that even the best attempts at preventing contractures and decubiti often fail in the final stages of this terrible disease.

    • Josh, you are absolutely right and I agree completely. I have thought about removing it many times. It happens to be one of the most popular posts on this site, which means that plenty of less-conscientious caregivers see it too- and at least it puts these issues on their radars. I will revise this post as it is over 5 years old now and could use a more polished approach. I only want to help, not harm. So thank you for bringing this to my attention again. And thank you for all you do.

  6. I had my mom at home for close to 6 years started with middke stage alzheimers, and we had some help to take care of her. She did well, but eventually she could not walk at all, so it was ver difficult to get get out for dictors visits, etc. last year I, after long debate with myself, decided to place her in a small facility recommended by a friend physician who has patients there he visits. She has been there abot 10 months now, and in the last 2 months has devrloped a contraction in her left leg. Among the things they supposedly were doing was some range of motion every day. My mom is at an advancec stage, and now I cannot help but feel that if I had left her at home it could have prevented this. I am not directly overseeing her care anymore and see her a couple of times a week, as opposed to when she lived with me. I do feel contractures ard preventible, but I see in this place they take good care, of het snd other 5 ladies that live there. There are 3 caregivers. I go there anytime of the day and always have found her well and relaxed, but the in 2 months she is like that, with s contracted leg, she seems to be shrinking. I dont know what to think or do. I feel so bad. Can she regain movement with therapy? Does this sometimes happen even if you try to provide the best care? It was such a hard decision placing her in a home, and I feel guilty her quality of life diminished even more. What acterrible disease this is.

    • Mary, I want to thank you for reminding me that I needed to edit that post. I found that over the last 5 years this post has sent the wrong message. What was meant as a wake-up call to facilities that provide mediocre care to step up their game- turned into a form of guilt/shaming toward really well-intended, loving caregivers. That was never my intent.

      The truth is that these are the most common complications of end stage Alzheimer’s- and they can be mostly preventable if you have extraordinary resources and vigilant care. And in some facilities and at some cost, you are entitled to expect vigilant care. But sometimes contractures can become quite severe. And throat muscles can weaken which might make aspiration more likely. And under some medically complicated circumstances, skin breakdown does happen despite excellent care. So my point is, although it is difficult to watch your mom go through this, it’s not always negligence that leads to these complications.

      In answer to your questions, therapy might help. It can’t hurt. And yes, sometimes despite your best efforts, these things can happen. My sincerest apologies for contributing to your guilt… I have nothing but extraordinary respect for your attention and effort. Your mom is very lucky to have you <3.

  7. Please don’t take this down I only just found it and got good ideas. We can’t do everything all the time at an optimum level but we can always try new things. My mom doesn’t or can’t cooperate or respond but she does want to grab and pull so I’m going to try one of those massage sticks and see how she reacts. She took care of me when I was physically helpless so I’ve got to give her the benefit of the doubt now, it’s only fair.

  8. It makes me feel good to read everyone’s remarks. My mom has Alzheimers for 14 years and lives in an assisted living where there are no nurses. She has been there for two years and has been in a wheelchair for one year. She went to the hospital with a UTI infection and when she was discharged we put her on Hospice for some additional care. They took away all her food and medicines for seven days and then in the hospital her leg contracted since noone moved her. I was horrified to see her leg bent five months ago. She started eating on the sixth day but her leg wss getting better.and no worse since nothing was done. Her leg used to be more than a 90 degree angle but is now less than a 90 degree angle. We had a physical therapist but we ended up not using a splint. Is there anything that can be done now. Mom has been eating now on the 6th day.

    • Wow… what a journey you’ve been on with your mom. It’s hard for me to say without seeing her. Sometimes passive stretching is helpful, and sometimes there are no lasting effects. Knee immobilizers and splints can be bulky and uncomfortable. If she’s in bed or the wheelchair a lot, positioning with pillows behind the knee to prevent further bending can be a mild remedy.

  9. Katherine Hamel

    Regarding your article “The 5 Most Common Problems in Late Stage Alzheimer’s Disease”

    Please do not take down or edit verbage in this article, as it explains your plethora of knowledge of Alzheimer’s disease and dementia. It contains the answers to my questions, and I am sure it will continue to help others care for their loved ones. I did not find anything offensive. Great job!

  10. Could you please advice on: a dementia sufferer, walks really well, but is extremely high falls risk, (has had broken pelvis and hof before). She is up and mobile again. But, now sits most of her time in recliner, but due to difficulty getting up requires either sling hoist or a stand- up- lifter (to another chair), then up and walking. But, with the stand up lifter or with carers x 2 and a walkbelt, she goes to sit way too soon for the chair! Would appreciate any ideas or solutions 🙂

    • You can try to put some tape on the floor as a visual cue for where her feet need to be before she sits. Verbal instructions are not as useful as visual instructions- so demonstrate what you want her to do and provide visual cues in the environment. Good luck!

  11. Please keep your post, there will always be people who will find something such as “one word” and use that to judge an entire post because they may be struggling with unnecessarily guilty thoughts regarding the care they gave to their own loved ones. Your intentions are to bring ideas and concerns to folks that may not know and need to know. As a caregiver for someone with Alzheimer’s, I appreciate what is being offered, so I can be mindful when I’m caring. Thank you for spreading the awareness!

  12. Thanks for your article. My Dad is 91 yrs. old & has had Alzheimer’s for about 15 yrs. He’s now at the end stage. The disease started to progress 4 years ago when my Mom passed away. He’s barely eating, weak, became bed bound a couple of days ago and continues to sleep more and more each day. I also have been thickening his fluids. Do you know if diarrhea could be part of the end of life or transitioning process? Two weeks ago he began having explosive bowel movements (BM), pasty. This week it’s been explosive diarrhea. They all have a very foul odor. The Hospice nurse originally said the BMs are part of a cleansing process during the end stage but she’s not saying anything about the diarrhea.

    • Hi Maria,
      I would defer to the hospice nurse on this one. If he’s not eating much, then there should be fewer and fewer events like this. I’m so sorry you’re going through this. My personal experiences with end of life have never matched someone else’s description. It’s been different every time. My sister passed away a couple of years ago and I played music she loved over and over. It gave me a purpose amidst all the helplessness. She would respond by raising her eyebrows 🙂 Good luck with your dad. I know this is difficult.

  13. I am looking after my husband who is 81at home who is in late stage dementia they say. He cannot stand or walk for 3 months now. He is completely incontinent, cannot feed himself, very limited conversation, now having swollowing issues I thicken all liquids to nectar consistency. He does cough up phlegm at least once a day. I have started to notice he keeps his thumb and finger together which makes his hands curl. I have been told he has less then a year to live. I find it hard that they can diagnose a time period for alzheimers. Would love to know of anyone who is a caregiver for someone at this stage who has been told a year or less to live.

    • Hi Gail,
      I can tell you that what your husband is demonstrating is very consistent with late stage Alzheimer’s. I’m not sure that a one year time frame is an absolute, but he is at risk of developing a complication from Alzheimer’s disease- pneumonia, falls, dehydration… I’m sure this must be a very difficult time for you. To the extent possible, keep him moving and keep him comfortable. And take care of yourself. All the best to you.

    • Sandra Lee Edmisten

      I am the caregiver for a very dear friend of mine since 09. She became bedridden a couple of years ago and after aspirating in her sleep went to the hospital. She then got sepsis and nearly died. They sent her back home to me with hospice saying she “may have 3 months”. After 3 months hospice decided to stay on for another 3 months after this 3 went by they decided to release her saying she was stable that was almost a year and a half ago. She will be 97 in Feb. Nobody has an expectation date stamped on them hunny. All we can do is our very best to see that our loved ones are as happy and comfortable as possible. I don’t insist she does anything that she doesn’t want to do. Both legs are bent and one arm is as well. She does not want me to bother with them and tells me to leave them alone so I am obedient, it makes her happy. I love all the ideas here because I am sort of learning as I go. I found that for my dear friend Kefir is just the right consistency for her at this stage and of course all foods have to be puréed . Applesauce has cured her of the poo babies ( what the doc calls them) that she used to experience. Please don’t change your information I don’t look for ways to take offense, I am looking for ways to make my dear friend feel better, happier more comfortable. Thanks, Sandra, former firefighter/EMT

      • Well said Sandra. And what a beautiful thing you are doing for your friend. Thank you so much for connecting!

  14. Michael Salerno

    Taking care of 95 year old mom in later stage. I’m an ex-Marine & cop. I train cops. This blog is the most informative material I have read. Don’t change a word. Sometimes, in a crisis situation, we may come across as insensitive. The final stage is a crisis & there is no way to sugar coat it. Dr Mike Salerno

    • Thank you for the feedback Mike. I wish you the best in caring for your mom. I’m married to a cop named Mike- stay safe!

  15. I took care of my Dad part time, he had always loved massages and I gave him massage even through his dying. Now I have Alzheimer’s and am in pain, I long for a great massage. Massaging hands or feet can relax the entire body. My plan is no food or water once the choking progresses. I have Hospice now. The caregivers who take offense should not determine what information is available. I know of a very dutiful person who sat my their spouse’s side for a week but did not recognize the bedridden patient’s anguished facial expression. They said the aides claimed “they all moan”. the patient had a MRSA infection in one hip and I am glad I looked for the source of the pain. I noticed other cgvrs become oblivious to body language and facial expression. Also CBD oil restores much function, if it is legal in your state there is no excuse for not offering it to a person with dementia.

    • Wow Emma, what a powerful comment. You are so right. There is so much we can do to ease the pain at the end of life, and even along the disease process when communication may not be clear. At least you can voice your own pain… I think you make a great point of looking for other signs of pain and addressing them. I do hear positive things about CBD oil. What state are you in?

  16. Late stages of Alzheimer’s will predispose to falls and though tons of article claim they are preventable, truth is they are not. Bed alarms often have false alarms which activate simply by moving a leg or turning. This will mean they will be rudely awakened and can predispose to more falls due to the lack of sleep..or once awake they may get into the “sundowners” mode and just start wandering — and fall. Many falls happen at the bedside and happen so fast they can be in front of you and they just fall. Probably the only true way to prevent falls is tying yourself within 3 feet of the person 24 hours a day so when they move you go with them. Skin breakdown is going to happen no matter what you do because their skin is like tissue paper. Even if you keep their nails trimmed as short as possible, they will it themselves and open up healing wounds. One single stage-two injury can literally take MONTHS of daily dressings. Taking an end-stage Alzheimer’s victim to the toilet every few hours is sometimes pointless because they will sit on the toilet and forget how to bear down and go. So they end up not going and go in their pants anyway. And if you use medications for Alzheimer’s–they will not work for more end stages and will predispose them to fall. Taking care of a late-stage Alzheimer’s victim is a daily living nightmare. Not only do family members do not appreciate what the caregiver has to go through everyday, more typically one person has to take the brunt of care and the rest go their merry way. The financial impact of caregiving is beyond astronomical and one can easily spend their entire personal life savings–on caring for their aged parent. Many will end up losing their job because care is a 24-hour a day endeavor and hiring people to watch and care costs from $20 (to just sit and watch) to $40 an hour (hands-on care). This does not include the cost of administration of medication which will require home-health nursing.

  17. Gait problems get worse as Alzheimer’s advances. It has to do with the plaque build up in the brain. It’s almost like Parkinson’s disease. Things like medication — especially psychotropics — will make falling more profound. but skin has to be assessed everyday and using skin barriers is important..but even with skin barriers they can still breakdown. All it takes it the person itch their skin and you have a stage two injury. It will take months of daily dressing changes to make it heal. PS: Never use donut foam cushions. People with Alzheimer’s can’t figure out how to position themselves correctly so they will end up injuring their skin. Use plain cushions and keep an eye on their skin.

  18. Thank you for your article on 5 Common Problems of Late-Stage Alzheimers. The article’s title is so distinct it was easy to find on Web with search of Late Stage. As more people get Alzheimer’s at a younger age, your article becomes more important, because death isn’t caused by other complications lilke heart failure or diabetes. My husband was very healthy man when he passed away at 66 from Alzheimers at 60 years old.I took care of him at home for 5 years with part time help. Eventually he had to go to Alzheimer’s facility to live. First, they drugged him (Risperdal/olanzipa) with out my knowledge because he was ‘very agressive’ per the doctor. He was also still strong. He was drugged to protect employees. He became weaker and weaker and more docile because of drugs and was in wheelchair. After 4 months he went on Hospice. Hospice group helped me get resources to I could take him home with 24hour care. He could not walk, eat by self…or do any activities of daily living. BUT THE PROBLEM
    I AM COMLAINING ABOUT IS SEVERE CONTRACTION OF MOST OF HIS MUSCLES IN MOST OF JOINTS IN HIS ARMS AND LEGs. Physical Therapist I hired said I should ‘Be Advocate’ for him in Alzheimer’s factility’. PROBLEM IS I DIDN”T KNOW WHAT TO ADVOCATE FOR OR WHAT THE PROBLEM REALLY WAS UNTIL I FOUND THIS ARTICLE on WEB. Now I understand, if medical professional had seen
    his muscles start to contract, they should have started to do ROM. I sent article to 2 doctors who visited him monthly for wellness check (and charged). They did and said nothing. They could have started ROM by qualiified Caregiver. He lived for several months after returning home…..and was in such pain when getting dressed or turned for diaper change. I wanted to give him the best care and thought I hired good specialists, but end of his life was grueling and painful because of this. My husband was young so I REALLY noticied it. But no one should have to go through this. I am telling anyone I can about this.Thank you

    understand it. I sent it to his two doctors who charged fees for monthly wellness visit…what did they do?
    Now I understand this can and should be prevented with l

Leave a Reply

Your email address will not be published. Required fields are marked *

*