Caring for Mid Severe Dementia: A Caregiver's Guide

What to know right now about this stage of Alzheimer's disease, what to do, and how best to get the help and support you need
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During the middle stages of severe dementia, you may start to notice changes in your loved one's memory, emotions, and physical state. We've provided steps you can take to help address those changes, plus advice on how to take care of yourself and build your support system while caregiving.

How to help the person in your care: Memory/thinking skills

A near total loss of memory ushers in the eternal present.

Nearly all memory -- past, recent, immediate -- is inaccessible. That's why people and places go unrecognized, and even the basics of everyday life, from walking to swallowing to elimination, become more challenging.

Action steps:

Embrace the here and now. "Live in the moment" isn't a cliché; it's a way of life at this stage of dementia.

Watch body language to help you read your loved one's mind. Pursed lips may say, "I'm not hungry now." A wince when touched or moved a certain way flags pain.

Don't be surprised if even *you* go unrecognized.

Whether the primary caregiver is a spouse or an adult child, you may sometimes be rejected outright or confused for someone else: "I want my real mama." "Daddy, is that you?"

Action steps:

Grieve. It's painful. Just don't take the mix-ups personally, or think that if you had only "tried harder" or "been closer" you'd still be recognized. You wouldn't.

Go with it. If your loved one asks for her "real mama," say, "She had to step out, but I'll tell her you asked for her." No need to correct: "But your mama has been dead for 40 years!"

If the person becomes resistant to your aid (because you're not the "right" person), back off. Wait a little, and start over later. Odds are, the incident will be almost immediately forgotten.

How to help the person in your care: Emotions/insight

The capacity for feeling emotions and being sensitive to nonverbal cues remains.

The five senses -- hearing, seeing, smelling, tasting, touching -- still work, to varying degrees, depending on individual health conditions. These are important communication pathways.

Action steps:

Use touch often. Lightly touch a shoulder when you approach, caress your loved one's hand when speaking, hug him or her.

Use fresh flowers, air freshener or potpourri, scented lotions, or favorite aftershave and colognes to stimulate and reassure.

Play music your loved one enjoys when you're not in the room or just sitting quietly.

How to help the person in your care: Physical function/personal care

The body can't remember how to do many basic things.

Dementia-caused physical decline will likely worsen now. Simple bladder incontinence, for example, may extend to bowel and bladder incontinence; difficulty walking might well extend to being bedbound; eating with assistance can turn into barely remembering to chew.

Action steps:

Break each task into smaller parts and issue prompts at every step of the way: "Now open your swallow."

Talk to your loved 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.

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's 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 the person with dementia, but find other places to unload your grief. Depression is a real risk now. If friends don't offer enough support, 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 severe-stage dementia housing, stepped-up home care, and hospice programs near you.

Long-distance caregivers, especially, may find a geriatric care manager handy. He or she can be your eyes and ears -- and your loved one's health advocate 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 your loved one 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, but hard to collaborate.

Decisions that are potentially divisive -- about medical care, housing, finances, and final arrangements -- lie ahead. Because they're emotionally fraught, whatever old clashes and differences 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, which 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: 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 that 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 Medicare or Medicaid? Cheer-me-up phone calls? Be specific. People are usually grateful for a chance to help, but helpless about knowing just what to offer.

over 2 years, said...

Mom did a very rapid decline to this state, although there were some signs of it earlier. She is now in a long term care facility, but may have to move again when we get to Medicaid, since they have limited beds.

over 3 years, said...

I have ADT security system and have had it before my husband developed dementia. Now he is getting up at 3:00 am trying to go out the front door. I have a safe return bracelet on him, an ID bracelet I also had a great call on him but he took it off and lost it. I keep our doors locked but he can unlock the new one I had installed this summer. The ADT alarm seems to stop him in his tracks and they call me when the alarm goes off. It is not safe out here near the woods for him to wander in the dark. I am concerned that if he keeps doing this ADT will take our alarm away. We never used it much in all these years. This is always in the middle of the night we he wanders. Any thoughts will be appreciated. Sharirose78

almost 4 years, said...

Thank you so much. All the information in this article is helpful and answers questions that are on my mind. Thanks again.

almost 5 years, said...

My mom is 89 and is in moderatr stage. Its so difficult to watxh. Her mother also had tgis but was worse earlier a. Died at 89. This was awful to read about. Can this be a long road ahead? I hate this for my mom.

about 5 years, said...

I have been so hesitant to share because I haven't been able to say the words but I lost my beloved Chuck on February 22 of this year. Two of our sons live out of state but all were together with him when it happened. He had been from rehab to hospital through the months of December and January. This only aided the progression of this awful disease. He developed a huge bed sore because he could no longer rehab. The only blessing in those months were that his confusion seemed to subside and he slept a lot and appeared to be peaceful, finally. He was in hospice for seven days before he passed. It was so true that much of the grieving began months ago and I realized it only after he passed. We all had a feeling of peace surround and comfort us. He was cremated and we had a beautiful mass and celebration luncheon about a month later. It was warm, caring, crying, laughing experience, filled with such wonderful memories of Chuck. The celebration of his life also gave us time to pay tribute in a positive way rather than a mournful way. Now comes the "missing him" time. I travel to see my sons and their families and wallow in the caring and love in their homes. I cannot say enough about this site and all the benefits it gave me and my family while going through the journey of dementia. I was able to vent at 2 AM if I had to or get tips on how to handle any situation that arose. I will be forever grateful and have already passed on the site to others on this journey. Still in love, Cindy

about 5 years, said...

Thanks for helping with guilty feelings. Grieving is normal emotions and part of the process. Website should be at every nursing facility! So much valuable helpful information.

over 5 years, said...

Thanks for the info on feeding tubes as I refused to have this procedure done to my wife as she eats soft food quite well but did asperate a small quantity into her lungs last month and I thought it was too soon for that procedure and refused.She still eats quite well.When the time comes for the procedure which I think is still down the road but not too soon I will know its time.More information on this procedure and opinions would be appreciated.Thank you- from Bernie

over 5 years, said...

Good Tips. I think it ought to be in local papers.

over 5 years, said...

this was a helpful article Im lerning more and more about this dieease I see up first hand now, Its very sad that such strong person has to become this weak lost person.

over 5 years, said...

Thanks so much for this site. It relieves my stress because you mention all of the things that are happening to my husband and does not make me feel so alone. This disease is so hard to manage. By the end of the day, I am exhausted and edgy. You have reminded me that I can do this and to keep my attitude in check. Thought that I could do anything but facing the fact that I cannot is something that I have to deal with right now as a personal challenge. Starting day care this week and hope that the response is positive for my husband and myself.

over 5 years, said...

This article was FOR ME!!! It was the answer to my thoughts and happenings with my husband, although he is not in secere stage,'s knocking at the door.. i'm sad...i'm jurt because his family has almost deserted him. I think he may be an embrassment to them now. I provide 24/7 care for him.

over 5 years, said...

etremely insightful=thank you

almost 6 years, said...

This site is wonderful.....its amost like a friend. Everything I read I completely understand. No one knows how I feel except my sis and daughter. His daughters have put their head in the sand!!!!! I should never leave the house or allow him to stay with anyone, if he doesn't want to go, at that particular time.....Yes, I was just told that!

over 6 years, said...

HI i'm looking for a good program that can help me take ccare of myy mother in law is very difficultt for me taking care of her her symptoms and diagnoses are dementia does not remember alots of stuff,talks ramdomly things that her name is Carmen whoo grew up with her, she talkks to her as areal personn and basicaly is her conco her demon that she looks like her that she is no one who tells her what is wrong in the world she talks to her laught with her friend carmen which when she talks there is nobody next to her ................SHe sits in a oldchair that she has almost 14yrs or more talks to her carmen and forgets everything. Me as her daughter in law dedice to take care of about 1yr already i left my own job to help her take care of because nobody of family approach to tae care of her please help me so i can get a salary in which i been working with her long time and never had agood program for her so i can work witth her....

over 6 years, said...

The fact that I can just jump in here and get tips about what I am experiencing right now with my mother is incredibly helpful. Especially the tips on how to react to all the incorrect statements made, and what the laughing it off or blaming others is all about. I have been at it for three and a half years and sometimes I can't think straight. I have tried getting aides and going back to work but that was harder for me to cope with, so I am back at it solo. It is nice to find a site that is easy to use and so accessable. thank you.

over 6 years, said...

I thought I had a lot of problems until I read some of your inputs, and have come to the solution that I am in a lot better shape than a lot of you. I am the sole cargiver for my wife who is 86 years old and in an advanced state of AD and Vascular Dementia. I firmly believe, after much prayer and meditation that the Lord will keep me healthy to take care of her, She does not wander and sleeps about 18 hours a day. I love her very much and want to do all I can for her as I feel she would do the same for me, but when the time comes to the point that she doesn't know who I am then I will consider putting her in an ass't living home or a nursing home. God bless you all!!!!!!

over 6 years, said...

This is the first time I have heard something that helps and supports me as a caregiver also. I told my family and neighbors that I needed a regular couple of hours every week or two, they ask: WHAT FOR?? He seems easy for them, they don't understand. Lately though I see them watching him with new understanding and concern. They think that he is depressed and that I should engage him and take him out more, get him to exercise,.....well yes, I try all the time.