A Caregiver's Guide to Late Moderate-Stage Dementia

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

How to Help the Person in Your Care

Changes in memory/other thinking skills

Memories of childhood and the distant past dominate. Early memories can be amazingly strong, to the point of getting mixed up in the present in surprising ways. One person may feel an urgent need to "get to the office," while another awaits a visit from a long-dead relative.

Action steps

  • Take advantage of happy old memories to win trust before difficult tasks (bathing, doctor visit) and to soothe during them. Topics women often like talking about include weddings and children; men often warm to sports talk.

  • Go along with mistaken beliefs or endless repetitions rather than correcting. They're usually harmless and a form of self-soothing.

  • Use distraction (change of scenery, amusing stories) to wind down or distract from mistaken beliefs as needed.

Strange things can happen as disorientation extends to everyday objects, faces, and places. The person you're caring for may not reliably recognize a TV remote, an adult child, or the place where he or she is living. Expect mix-ups (brushing hair with toothbrush), delusions[item://delusions-with-dementia) (false beliefs), and hallucinations (seeing, hearing, or smelling something that's not there).

Action steps

  • Set aside your best logic to correct or disprove; he or she can't follow it.

  • If the belief is frightening, work to calm him or her.

  • Use actions (turning on the TV) rather than words ("That's a TV remote!").

  • If hallucinations are new or follow a trauma (hospitalization), tell the doctor immediately, as they could be caused by a medication or infection.

Changes in emotions/insight

Imagination or suspicion may be used to explain away what logic can no longer figure out. This is a common way the brain copes as awareness of having dementia fades. Lost glasses have been "stolen." An aide or visitor is proof a spouse is having an "affair." A request is a "trick."

Action steps

  • Don't bother defending yourself or others against wacky accusations. Rationalizing is impossible. Better to agree (or ignore) and distract.

  • Do assure the accused you know he or she is innocent. Remind your loved one that it's the dementia talking.

  • Do assure yourself, of course, of the facts. Elder abuse and rip-offs do happen.

Changes in physical function/personal care

Sleep disruptions can disrupt an entire household. Beginning in late afternoon, restlessness can brew into sundown syndrome, where the person becomes upset and unable to sleep. Variations: sleeping too much by day and awakening at night, catnapping 'round the clock.

Action steps

  • Even if excessive day sleeping makes life easier for you, discourage it, because you'll pay at night. Encourage movement, fresh air, and frequent light meals.

  • Manage night wandering with basic safety steps, like adding door locks or chimes, removing scatter rugs, getting wearable ID.

  • Don't let disrupted sleep go on for weeks; your health will suffer. In extreme cases, ask the doctor about sleep or antianxiety medication for the sundowning person.

Take grooming and bathing slowly -- and safely. As the brain and body fail to communicate well, it takes longer to coordinate the necessary movements for dressing, bathing, toileting, and getting into a car or seat.

Action steps

  • Give lots of prompts for each step, rather than just doing it yourself.

  • Balance a respect for privacy with a need for safety. Decide what you're comfortable doing and consider outside help for what's awkward (an aide for heavy lifting, a same-sex relative for bathing).

  • Learn how to manage incontinence, which is a leading cause of out-of-home placement.

How to Take Care of You

Give yourself a stress check. It's natural to focus on the person with dementia, but the reality is that the physical toll on caregivers over time is huge. You now need more self-care, not less. Think of it as something you do for the person with dementia, because healthy people can care better and longer.

Action steps

  • Vent frustration regularly to a trusted friend or counselor, or vent on paper or online.

  • Have social outlets that are all your own, even if it's just an hour or two a few days a week to meet a friend for coffee.

  • Make your own routine healthcare appointments for the coming year now, so they're in your calendar.

  • Watch for signs of caregiver burnout, which include sluggishness, sleep trouble, aches and pains, and feeling that nobody understands.

Call in the cavalry. No single individual can manage dementia care all the way through, all alone. And as hard as things are now, this is still the just the late middle part of the disease.

Action steps

  • Call your local Area Agency on Aging to find out what respite options are available near you (both in home and away from home).

  • Begin to research "what if" [housing options]https://www.caring.com/alzheimers-housing-options. In the future event you need to make a change, it's best not to do this in crisis mode.

  • Keep a master list of everyone who volunteers to help you or who may be of help -- drivers, gardeners, errand-runners, sitters. Don't feel bad about calling them. People like to be useful.

  • Consider hiring a geriatric care manager to help organize stepped-up care and supplement hands-on help.

You, not the person with dementia, will have to change. Erratic behavior and rudeness isn't on purpose. The dementia causes them. The less the two of you butt heads over things that can't be controlled, the more you can learn how to work with the real adversary, the changing brain.

Action steps

  • Erase phrases like, "Try harder" or, "Don't be like that!" Someone with dementia is doing the best he or she can. Berating or cajoling only adds frustration -- and leads to more mistakes.

  • Even if you're not the "group type," it's not too late to join a support group for dementia caregivers. You'll learn strategies for communicating better, meet kindred spirits, and more. If it's too hard to leave the house, ask a local hospital, memory center, or Alzheimer's group about phone support groups. Or use an online support group.

  • Learn the "why" behind [common symptoms]common symptoms of dementia to help you redirect or avoid them.

Your emotional relationship with the person you're caring for will change despite all your love and help. That's because over time, everyone with dementia becomes more dependent. Old balances of power inevitably shift. "You'll still always love the person, but the emotional give-and-take will never be quite the same," says dementia family-care pioneer Lisa Gwyther, author of The Alzheimer's Action Plan.

Action steps

  • Let yourself grieve -- that's what you're experiencing, even as your loved one lives. It's hard to see suffering and to let go of old expectations.

  • Live in the moment as best you can. Dwelling on old memories (home movies, photograph albums) or disrupted future plans (retirement, travel) can be unnecessarily painful.

  • Embrace the good moments that still lie ahead. Dementia doesn't erase all the grace notes of laughter and gratitude.

How to Build Your Family/Support System

Know that denial is a common -- and strong -- emotion. Even deep into the disease, others may choose to ignore what's happening. Or they may not want to think of their loved one as changing, because it means changes for their lives, too.

Action steps

  • Share what you see. Regularly and candidly update family and friends; the more they hear, the better they can understand.

  • Encourage others to spend time with your loved one in order to share your front-row seat on what's happening. Some things have to be experienced to be believed.

  • Share what you learn. Most people are unaware of the stages of dementia, how personality can change, and other basics. Passing along links to helpful articles and other resources teaches them.

Family and friends may not know how to help unless you make specific requests. What may look like obliviousness or refusal to help may be uncertainty. People aren't mind readers. Most haven't dealt with dementia before. Yet most of us actually like to contribute and don't see being asked as an intrusion.

Action steps

  • When you ask for help, give details -- the exact task, time involved, directions, potential snags -- and as much advance notice as possible.

  • Divide categories of help among siblings or other family members if possible, so one person handles all insurance and financial matters, another handles alternate housing research, and so on.

  • Remember that help comes in many forms: somebody doing errands so you don't have to, giving you time off, bringing food, driving to doctor visits, and -- especially -- paying for things (handy for long-distance or busy family members).

Others may find it easy to criticize, hard to collaborate. No two individuals have the same relationship or see things from the same vantage point. Disagreements occur, especially about emotional decisions. But you can circumvent some hard feelings.

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.


about 3 years ago, said...

changed to late moderate stage can't find { join the conversation} that is recent, all months old


over 3 years ago, said...

It seems like everyone is pushing me to institutionalize my mother ( mostly my siblings). I feel I just need a few days of respite care. I haven't had a vacation in over 3 years. Not sure what to do?


over 3 years ago, said...

How do you handle it when your parent words are no longer understandable. She will have a word here or there that I can understand but rest is just not understandable. And she keeps trying to tell me things. From what I can tell it must sound okay in her head. But does not come out understandable. Very difficult when they can't communicate for sure.


over 3 years ago, said...

What about waking up in panic from nightmares? What should I be expecting next?


over 3 years ago, said...

I dont know what stage Dad is in, the question list only partly pertains to him. Dad has been ill 5 yrs, but past 2 1/2 yrs he cant walk, feed himself or barely lift his arms. Doesnt talk much, but when he does it just isnt DAD! My dad was respectful of females, wouldnt swear nor let anyone else in front of a woman. Now he talks like a sailor, makes sexual comments and demands...even to me. It kills me to hear this. I change his diapers, wet sheets and clothes, spoon feed him, clean his ears, nose, trim his nails, wash his hair and cut it. Keep his Dr appts, prescriptions filled, mail his bills and do his insurance and taxes. I also have a 6 day a week full time job. A CNA comes in the mornings then leaves when I get home. I take over from there and on Sundays I take care of Dad. I guess if he just acted like the ole Dad I grew up knowing, I wouldnt mind being so exhausted. He is so different. Everything he sees on TV, he thinks is real. He says people are standing behind me when no one is here. He cant roll over on his own but has to be switched from side to side to prevent bed sores, but Dad gets upset every time I roll him over. I tell you, this is the toughest thing I can recall having to do. I find myself wishing and praying it was over. I feel bad about that. It's something I cant help feeling. I love Dad dearly. Best father in the world! Still...what on earth brings us to this point in our lives and why must it drag out for so terribly long?


over 3 years ago, said...

I wrote a comment and looked below to see the last one was written 7 months ago! I need to be in a more interactive conversation. :)


over 3 years ago, said...

I think I am finally on the right conversation site. Is this the one with one sister being Ann? I am the one working with the one who has communicated some. I will help her go back to profile and change some names. We are climbing a rugged mountain with few plateaus while trying from a distance to make sure our sweet, most of the time, Mother.I found this site in March and thought it would be great for all of us. Only we two are cooperating.!!


over 3 years ago, said...

I accidentally joined mild stage group and need this group.


over 3 years ago, said...

I am finally on. My screen name is cupcookie~I have been referred to as Char by one member. I am looking for support in ways to care for our mother when family does not agree on her care. Mother worked hard to prepare for her later years, but the main caregiver by way of geography doesn't want to spend Mother's money on getting care in during difficult times. Yesterday my mother was left alone all day and evening long. Talking to her on the phone most of the day to keep her feeling safe is what another sister and I had to do. She did not want to leave her bedroom. She was lonely and crying. She was hungry and eating only an apple. Sister in charge threatened me with,"I will take measures against you." When I mentioned calling Mother's doctor on Monday to get home health back in. She has a cut leg and had homehealth, but Sis discharged her. Sis could not answer me when I asked what kind of measures she would take. Today, Sis had her daughter call me to yell, scold and threaten me for not agreeing with their plan (that leaves mother frightened by herself all day). She gave me an ultimatum....I and other sister go down and take over or they were all getting in their cars and coming up here to I assume move in with the 4th sister who lives not far from me and can house them in her basement. They were prepared to leave mother. Then Sis calls my husband to tell him to tell me to back off or she willl bring mother up here and leave her with me. We will do that, but we will have to hire full-time help because I have MS and complications from a surgery. I just returned from a week at Mayo and not finished there yet! What does one do with a Sis in charge because she lives there, has had many material perks, including a water-front lot given her to build on and be close to Mother to care for her as she got older. I am baffled, hurt and confused at how this is happening.


over 4 years ago, said...

Very helpful. My 86 years old mother fits perfectly in the late moderate stage. Best explanation of each stage I have seen in the whole web. Thanks a lot!!!


over 4 years ago, said...

Hi My Husband is 67 and was diagnosed with mixed vascular dementure last year. He is a totally different person. He looks straight through me. he cannot speak much but can manage yes anf no to other people but not me. It is really frustraiting and is getting me down as ll I seem to do is bath himfeed him still work3 days a week and with no thanks at all. Feel as though my loife is ov er as well or that he is blaming me in some way . Sorry sounds as though I am moaning


about 5 years ago, said...

My wife is 36 yrs. old, She shows almost every symptom of dememtia. Sleeping most of the day, and up at night, fumbling around. I watch her, and it scares me! I am scared that she can hurt herself, or our kids. Please help!


about 5 years ago, said...

My wife is 36 yrs. old. She shows every symptom of dememtia. Can it attack my wife at such a young age? Please Help!


about 5 years ago, said...

Hello pig, Thank you very much for your comment. If you'd like, you can post any questions you have in our Ask & Answer section, located here: ( http://www.caring.com/ask ). I hope that helps, take care! -- Emily | Community Manager


about 5 years ago, said...

does everyone get dementia? he has had alot of things happen to him this year to his body. how can this come up so fast?


about 5 years ago, said...

yes very. i am begining to understand things better and know that my husband's symptoms are not all typical and that he is an individual who needsa individual solutions to his problems


over 5 years ago, said...

Very helpful. Made me see things in a new light. Thanks


over 5 years ago, said...

Hello CharD, Thank you for your question. Here is an Ask & Answer page that you may find helpful: ( http://www.caring.com/questions/declaring-parent-incompetent ). I hope that helps. -- Emily | Community Manager


over 5 years ago, said...

How do you know when it is time to start the process of declaring your parent as incompetent?


over 5 years ago, said...

I sent this to family members lilving in other states. They can't help out here, but by letters and phone calls they can be an encouragement to both of us.


over 5 years ago, said...

Realizing that there are no solutions and no easy answers to any of these situations I decided to make the best of an on-going growing worsening condition and write a blog. Try at little levity at deborah-djblog.blogspot. com. It certainly can't hurt.


over 5 years ago, said...

We just moved my 92 year old Mom in with us in May. This information has been really helpful, particularly in identifying her symptoms and how to care for myself. I must say, though, that it's the constant repeating of questions that drives me NUTS! There, got that off my chest. Thanks for the outlet.


over 5 years ago, said...

Thanks. Good article and help though it barely scratches the surface of what I am going through with my mother.


over 5 years ago, said...

Mom was admitted in hospital for not eating, not drinking and hardly walking. She was very very confused. Her memory is worse and we are traveling. Called to see how she was as we are traveling and they can't tell me as I need a code. Can't get the code over the phone. Heading out tomorrow so will see her at hospital. Know they are treating her for urinary infection but as far as eating and drinking it may not change. She is At later stage now. Praying the lord be merciful to her. Pray what is best for her happens. God is in charge of her now I guess.