Alzheimer's: Early Severe-Stage

What You Need to Know About Early Severe-Stage Alzheimer's

How to Help the Person in Your Care

Changes in memory/other thinking skills

The range of what's remembered shrinks further. The person you're caring for may have a harder time retrieving even early memories now. Names and faces of close family members may go unacknowledged -- although the main caregiver(s) tends to be recognized the longest. The person may get lost in his or her own home.

Action steps

  • Urge friends and family not to take it personally if they experience little recognition. It's not a reflection of the quality of their relationship.

  • Don't leave the person unsupervised for any period of time.

  • Continue "reminiscence therapy" with someone still verbal. Show a tangible object (not a photo or papers that must be read) representing a past interest: a flower, a toy doll or tractor, a tool. Talk a little about it: "Look, Mom, some yarn. You sure made a lot of amazing sweaters in your time." She may take the bait and respond, or say little. But you may still spark a smile from a triggered memory.

Communication grows harder. People generally speak less and less through the last stage of dementia. Some use nonsense speech -- strung together words or syllables that sound more like babbling than talking. Variations: singsong, continual moaning not linked to pain, crying.

Action steps

  • Continue your own natural, respectful speech. Hearing isn't affected by the dementia, and you're apt to still be understood.

  • Tune into what's being said through body language. Grimaces, frowns, smiles, and so on speak volumes.

  • Ignore singsong and nonsense speech, especially if it seems to be a self-soothing device. It's best not to use baby talk back, though.

Changes in emotions/insight

Disappearing self-awareness makes everything seem worse. Your loved one's' condition may seem to decline suddenly, with poorer memory, weakened mobility, little initiative or judgment, a less helpful attitude in personal care -- even fewer annoying, odd behaviors (wandering, restlessness). What's happening: Losing one's sense of self affects the degree and quality of participation in all aspects of life.

Action steps

  • Review your care plan. Know that this decline, which can be alarming, doesn't necessarily mean the end of life is very near, only that you've entered a new stage.

  • Use your voice, your touch, and your loving attention to connect. Know that emotions are still felt: fear and security, uneasiness and calm, sensing disrespect or love.

  • Consider introducing a stuffed animal, blanket, or doll as a self-soothing item.

Changes in physical function/personal care

Expect more medical complications. A growing brain-body disconnect (including reduced mobility and incontinence) leaves the person more vulnerable to such health issues as infections, pressure ulcers (bed sores), breathing difficulty, aspiration pneumonia (from inhaling food), and falls or fractures.

Action steps

  • Stay attuned to signs of pain that may not be communicated with words, such as a grimace when moved a certain way.

  • Talk to your love one's doctor about palliative care, which emphasizes pain relief and comfort care for people who aren't yet candidates for hospice.

  • If feeding problems develop, explore options other than feeding tubes. Feeding tubes have not been shown to prolong life and can cause both complications and emotional turmoil. Learn alternate ways to feed someone with severe dementia.

  • Be vigilant about turning the body and exercising limbs for someone limited to a chair or bed to reduce the risk of blood clots and pressure sores.

How to Take Care of You

Grieving is understandable, important, and necessary now. There's no way to know how long severe-stage dementia will last, but it is the final phase of a terminal disease. Studies confirm that sadness, mood swings, longing for the past, guilt, and other dark emotions felt now -- called anticipatory grief "“ are the same as "real" grief.

Action steps

  • Let yourself mourn, rather than holding it in all the time. Anticipatory grief can actually soften the pain of emotions following death.

  • Do put on your "brave face" in front of your loved one with dementia, but find other places to unload your grief. Depression is a real risk now. If friends don't feel sufficient, this is a great time to try the emotional outlet of a professional therapist or counselor.

You need specialized support, 24/7. If you haven't explored out-of-home care or hospice care yet, now is the time. The round-the-clock needs of severe-stage dementia often exceed what families can handle at home without extensive (and typically expensive) support. At least check your options.

Action steps

  • Call your local Area Agency on Aging to find out about end-stage dementia housing, stepped-up home care, and hospice programs near you.

  • Long-distance caregivers, especially, may find a geriatric care manager to be a handy alternative to being there in person -- to be their eyes and ears, and health advocate, for a relative in a care facility.

You need and deserve guilt-free time away, more than ever. Whether you're providing more or less hands-on care now, the emotional toll remains high. And long-term stress is especially dangerous.

Action steps

  • Set aside feelings of guilt and obligation to regularly step out of an intensive-care situation. You're being smart, not traitorous. It's a health issue, plain and simple.

  • Consider a long-term commitment: taking a class, volunteering, or adding a part-time job. You may feel your "job" is to remain at the side of the person with dementia, but it's also important to set the stage now for resuming a post-caregiving life of your own.

It's not premature to begin final arrangements. "The long good-bye" eventually ends with a permanent good-bye. Making plans for that day doesn't "jinx" anything or make you a bad person. It can actually ease stress both now and later.

Action steps

  • Locate and review any end-of-life instructions that were made so you're ready: advance directives (such as a living will), funeral preferences or other final arrangements, a will.

  • Begin to informally discuss funeral and burial plans with immediate family. This lets you brainstorm together and work through conflicts now.

  • If your loved one is a veteran, explore free burial programs in national cemeteries.

  • Consider drafting a eulogy, obituary, and/or photo/video memorial. Contrary to being morbid, the task can actually help ease stress now (as you think about the person in a positive light) and later (because you'll have done much of the work when time constraints were less pressing).

How to Build Your Family/Support System

Others may find it easy to criticize, hard to collaborate. Decisions that are potentially divisive -- about medical care, housing, finances, and final arrangements -- lie ahead. Because they're emotionally fraught, old clashes and differences that might exist in your family may come to a head. Communication now can sidestep clashes later.

Action steps

  • Explain that experts agree there's no single "right" way to handle dementia care. You can only do what seems best at the time.

  • Ask critics to stick to describing what they dislike about the situation, not about you personally. You're already doing the best you can, but try to be open to ideas that could make things easier for everyone.

  • Call a family meeting to discuss thorny issues. Separated by miles? Try a free family conference call.

  • Respect others' viewpoints -- everyone has a different relationship to the person with dementia. But insist that your ideas are respected as well.

  • Bring in third-party experts, such as a trained family mediator, to help navigate tough choices as a group. Cheaper alternative: a family friend or trained clergyperson who can be neutral.

What seems like lack of support may be lack of understanding. It's hard to relate to severe-stage dementia unless you see it firsthand. If friends and family have drifted away, they may need a nudge to provide emotional, practical, or financial aid.

Action steps

  • Share what you see. As much as you can, regularly and candidly update others. Even when there's no change, it's a reminder you're still at it. Share links about what happens in severe-stage dementia.

  • Encourage others to spend time with the person who has dementia. Some things have to be experienced to be believed.

  • Ask for what you need. Help with Medicaid? Cheer-me-up phone calls? Be specific. People are usually grateful for a chance to help but are also often helpless about knowing just what to offer.

over 1 year, said...

I am trying to cope with making the decision to put my dear husband of 52 years in a Nursing Home. He was diagnosed with Alzheimer's over a year ago, but had the symptoms coming on for about two years prior to that. Now he is in the hospital with stage three kidney disease, and severe anger issues. He sundowns every night and throws his walker at the Nurses and creams and swears at everyone. I could never attempt to bring him home like that - we live in an apartment now. I am 72 years old, and it seems like my life is ending as well. How does one go on after this awful disease turns their spouse into an alien? I know he needs around the clock help that I could not give him It would take us both down. Someone please tell me whether this is the right decision and how to cope with it. Bonnie O.

about 3 years, said...

I'm so glad I've read through most of these posts. They are very helpful in letting me know I am not alone. I sometimes feel like getting on a plane and escaping to a deserted island all alone. My mom is 90 and is in early severe stage of her dementia. She's had it for almost 10 years. I moved in here with my parents and bi-polar/schizophrenic brother to help take care of them. My dad had a quad bypass six years ago and is now on dialysis. My younger sister moved in 3 years ago because she had no job or place to live. She is a severe narcissist with bi-polar and lots of other ailments. She can be lazy and very forgetful. She concerns herself with herself a lot and sometimes doesn't offer help. It's already hard to take care of my mom, making special dinners for my dad, who is very demanding and sometimes intolerable. My brother is a sweetheart though he is very forgetful. He helps me a lot with my mom but I have to remind him daily how to do things. I see that it puts a strain on him and I feel bad for him. My father doesn't want to pay much for getting help for us since we all live here in his house. My brother and I do most of the work. My sister does dishes, folds and puts away my parents laundry, & takes my dad to dialysis 3 minutes away, 3 days a week. She picks him up also, but doesn't do it all the time. I cook, clean, take care of my incontinent mom, take them to dr's, fix both parents pills each week, handle all the house bills, wash laundry and put in the dryer, do 90% of the shopping, reorganize the house, do all kinds of errands, keep my parents' medical info in order at home and online, and many more things...I even help with lawn care when I can and feeding our dog and cat. I never have time for myself except tonight I went to dinner and a show with my 2 sisters. I felt guilty leaving but I had to get out a little! Any suggestions are welcome to make life bearable.

about 3 years, said...

There are so many resources out there to help those that need help. You are not alone. If there are family members that are willing to help please ask for help you. Family should stick together when your mother or father have this dease. Books online help. Classes that you to take. She this is a touchy subject. But it needs to be talked about. I wish the best of luck to each and everyone that is on this site.

about 3 years, said...

My mother in law is surely different every time we switch , when we have her. She still knows our house even tho she says she does not live here. She goes straight to her room and I show her the bathroom and we're her belongings are. She asked how did they get here. We tell her that she has clothes at all her houses. I'm sure that messes with her head. But then she forgets all about it. It is the sun downers that's the hardest part she goes through. It is very painful to watch her get all turned around thinking she has to leave right now. Her son try to calm her down and reassures her everything will be ok .

about 3 years, said...

What(if any) are the advantages of a nursing home or assisted living environment for someone with dementia? Trying to decide when and to what advantage my husband would have living in another environment.

about 3 years, said...

I wish I knew, but thank you

almost 4 years, said...

My mother in law will be Hereford two weeks. She has lost all bladder control.but that's OK we wash her bedding every morning and then she comes out cries a little .We know its the disease I love her with all my being. I'm always the one who helps her shower do her hair , wash her dentures . make sure she has comfortable clothing . I hug her often and tell her everything is going to be alright. She has had a Hard time chewing and we keep ensure or yogurt in the house . If she says I'm not hungry we switch to the other. As long as I can remember she has been a very loving mother in law and grandmother.

over 4 years, said...

just knowing I am not alone

over 4 years, said...

To all: I strongly recommend you watch a webinar (any of them) by Teepa Snow. She is a brilliant expert in dementia/Alzheimer's. She explains actions and behaviors so easily, and can show you how to make small changes that give big benefits. Our Family Council has worked for over a year to get her to speak at Rockynol where my parents have been (and my mom still is: She comes on this Monday!!) We can't wait for staff to see her in action.

over 4 years, said...

Caddyman: It may be that your wife is feeling overstimulated, or feeling bad about herself because she can't do or enjoy what she used to do. If you haven't read "The 36-Hour Day", I highly recommend it. It gave me a much better insight in dealing with my dad during his Alzheimer's

over 4 years, said...


over 4 years, said...

My mom has been having periods of crying. She now cries every day, sometimes for hours and just talks at the same time. It is difficult to understand her at all because of the dementia and since she had a stroke a month ago which affected her speech. It is very upsetting when she cries and nothing we say or do consoles her. Is this part of the illness?

almost 5 years, said...

The action steps in this article helped me focus on something tangible that family can do as the decline of our mother continues. This helps alleviate some of that helpless feeling we feel.

about 5 years, said...

My brother-in-law has severe dementia/Alzheimers. He hardly eats anything and is so thin. He babbles a lot, sleeps sitting down because he doesn't want to go to bed. At night he babbles and cries out for his mother. My sister and I feel so badly because we can't do anything about it. She takes good care of him plus he is on Hospice. So the nurses or aides come and check on him. We don't know if he is at the last stages of this dreadful disease or not. How can we tell?

about 5 years, said...

We are doing much that I just read above and it is helping...right now my interest is my father who is also in the nursing facility with my mother. He has his own health issues in fact we just got him back from the hospital after 5 days with blood clots in the lungs. My mother does not know him broke his heart...we are in the process of getting him his own room at the facility for his sake both physically and mentally. He is good with this. I really have no words after being with my mother the past 5 days and seeing her go down even more in this past 4 weeks that ever before. She can not do minimal tasks at all any more like holding an object and putting it to her mouth. That blank stare (her eyes haunt me). I think she sometimes sees things that are not there. I find myself unable to handle night I wake up in a cold sweat knowing my mom is gone...lost forever. It is just a body that is not recognizable. I pray the Lord will take her.

over 5 years, said...

My spouse is incontinent more than he had been. He soils his jeans even with a depends on. He soaks through once or twice a night and sometimes a couple of times a day when he is up and around. What do you recommend? He is confused a lot. When he gets up at night, he takes off the depends and the wet pajamas. He rolls the depends up in a ball and rolls it out the patio door like a bowling ball. Sometimes it is on the bathroom counter. He may not replace the depends. Takes off the wet one then puts the jeans of that I have laid out for the next day.