A Caregiver's Guide to Mid 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

Eroding recent memory raises dependence. When you can't remember who just visited . . . what was just on TV . . . whether you've just eaten . . . you can't track the flow of days well. Your loved one may say, "You never see me!" to someone who visits daily. Following a conversation, by phone or in person, gets trickier, so he or she may be quieter.

Action steps

  • Hew more closely than ever to routines (the same mealtime, same chair, same bowl). They provide comfort and organize the day.

  • Ease anxiety by initiating activities (simple chores, art, talk) that keep him or her involved in everyday life.

  • Simplify. Instead of listing many plans or instructions, break it down. Say just one clear bit at a time.

Episodes of confusion increase. Questions often heard now: "Where are we?" "Why are we here?" "What should I be doing?" "Who are you?" That's because staying oriented in the reality of the present is difficult. The line between public and private behavior can blur, too.

Action steps

  • Don't be annoyed if your loved one seems clingier or follows you around. You're his or her official field guide to a discombobulated world.

  • Focus on the feelings behind the words. Calm or worried? Sad? Afraid? Respond to this underlying emotion.

  • Gently help orient: "We're driving to the doctor's . . . here we are in the doctor's parking lot . . . the doctor's waiting room has such a great fish tank . . . the doctor will see you to check your eyes soon. . . ."

  • When inappropriate behavior happens in public, try not to be embarrassed; smile apologetically and calmly leave.

Changes in emotions/insight

Misunderstanding -- or being misunderstood -- can cause upset to the point of anger. As awareness of having memory loss wanes, there's a tendency to blame others when things don't go well -- especially his or her caregiver (that means you). Even mild-tempered fuses may shorten. Possible reactions: insulting, pouting, threatening -- or even cursing and hitting.

Action steps

  • Keep the person you're caring for physically comfortable and reassured of your love and support. This alone can often keep upsetting reactions at bay. (But not always, so don't blame yourself if, despite best efforts, aggression rears its ugly head.)

  • Match your body language and tone to your words: smiling, calm, unhurried, respectful. No baby talk.

  • Explain, in bite-sized bits, your intentions about what's happening next ("Now I'm going to wipe your hands"), so there are no surprises.

  • Keep a stock of soothing phrases: "I know it's hard." "You're safe now." "Yes, that must be upsetting." "I'm sorry; all done."

Changes in physical function/personal care

More help will be needed with the basics. Eventually dementia makes dressing, bathing, toileting, and getting into a car or seat challenging, even for otherwise healthy people, as the brain and body fail to communicate well. It takes longer to coordinate the necessary movements.

Action steps

  • Try introducing looser-fitting clothes (sweats, closure-less sweaters, sport bras for women, short socks), which go on more easily.

  • Give lots of prompts for each step of grooming, 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).

He or she may develop some bladder incontinence. Forgetting to "go" and the brain having trouble reading the body's signals can mean more accidents. Another common cause: Trouble remembering where the bathroom is, especially in an unfamiliar place.

Action steps

  • Try buying underwear-style protection and adding it to his or her underwear drawer -- many people are surprised how "normal" it looks. Just don't call it "adult diapers"!

  • Through the day, casually ask if he or she needs to use the toilet. Point it out when you walk past. Start moving toward a schedule.

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, 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. You'll need more help over time, not less. Once someone with dementia needs 24/7 monitoring, you can see how no single individual can manage dementia care all the way through, all alone. And as hard as things are, this is still the 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 nearby).

  • Begin to research "what if" housing options. In the future event that 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 purposeful. 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

  • Try to 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," consider 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 of dementia to help you avoid or manage them.

Your emotional relationship with the person in your care 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, old photo albums) or disrupted future plans (retirement, travel) can be unnecessarily painful.

  • Embrace the many good moments and days that still lie ahead. Dementia doesn't instantly erase 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 the person who has dementia 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, another handles alternate housing research, and so on.

  • Remember that help comes in many forms: someone 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.


over 1 year ago, said...

Yes, this article was the most helpful I have read so far. God bless you for sharing these insightful and non-judgmental suggestions. My brother has dementia and is living with me because no other family members have any interest in helping either one of us.


over 2 years ago, said...

Giving care to someone you love is very hard. Repeating yourself every two minutes is difficult. I know she is talking a lot because of the insecurity. But the constant shatter is had to live with.


over 2 years ago, said...

It helped ease some stress knowing that they are not doing it on purpose.


almost 3 years ago, said...

Wow. Another eye-opener for me. The more I read, the more I understand what is going on and how to handle it. Some of the recommendations just don't "seem right" - such as agree if he thinks he is somehwere else instead of our home - stuff like that. But I guess the less you correct, the less you argue, the less you say, is better - for both of you. I posted earlier and am going to say this again. My husband has been seriously ill for 20 years now - transplants, cancer, strokes, seizures, diabetes - this is truly the scariest and hardest for me. I think because it can only get worse. The physical stuff can and does improve over time but this - this is one scary diagnosis.


about 3 years ago, said...

Yes it was helpful, however. Some of her physical are better than emotional or behavior... I don't want to spoil her, I want her to be independent but at 93, bless her heart, she deserves all the help she can get.


over 3 years ago, said...

This article was very helpful. I not only understand what my Dad is feeling, but also appreciate the suggestions for handling behaviors..I have tried just holding my Dad when he gets scared and cries, and when I tell him we understand and we are taking care of him and keeping him safe, he seems so comforted by that. He seems to need that physical contact to help him feel safe. Mom loves him but isn't as touchy with him as she was in years past.


over 3 years ago, said...

Descriptions of stages, and especially, the action possibilities. Normalizing the behaviours has been helpful in increasing my patience level. Thank you.


almost 4 years ago, said...

Thanks for the tips. They are very helpful. I find it difficult to ask friends for help but I see that I will be needing to do that in the future. Time to grow and stretch again.


about 4 years ago, said...

Great article. Hit at a high level all of the aspects that come to mind as a caregiver and some I had not thought of. THANKS!


about 4 years ago, said...

The descriptions of the stages: I could better identify where my husband is now.


almost 5 years ago, said...

each and everything...i have just started the journey and am overwhelmed...i see this will only progress...i will be reading everything i can find...thanks


almost 5 years ago, said...

I APPRECIATE ALL OF IT. EVERY LITTLE BIT HELPS OR REINFORCES. GEEZER81


over 5 years ago, said...

Thank-you for the action steps. They were very helpful and gave me new insight of what more I can do to help "us"...We do not have our families close to us, so support comes from friends, neighbors, church members, and other caregivers in my support group. It's very difficult to ask anyone for help, but I do not reject any offer. Thanks again for your professional advice.


over 5 years ago, said...

Thank you for reminding me that this is the midpoint of the disease...smile


over 5 years ago, said...

please pray in my home based-business a can stay home with my husband . make money to paybills. living on his ss. is not a enough. on e check doesn't do it. can"t work outside the home. can't be left alone.


over 5 years ago, said...

I'm a once-a-month reliever to my niece who is my sister's caregiver. At least its once a month right now. I'm aware it will change as my sister changes. I know I will have to eventually move to my sisters to help my niece full-time. I am the main support to my niece as she's an only child. She sent me your site and it's been most helpful to me and my family. My daughters and grandchildren are very helpful also. We all appreciate your site and input as we, like others, are new to this process.


over 5 years ago, said...

very helpful


over 5 years ago, said...

Lets me know I am on the right track. Husband cannot help the way he is & needs the love, understanding & patience which comes only from the Lord.


over 5 years ago, said...

I am so very blessed to have a hired caregiver helping me split the days looking after Mom (she has 4 straight; I have 3 straight). We're able to keep Mom in her own house, sleeping in her own bed, with a set daily routine. If we do have to make changes in our days or add a doctor's appt to the mix, we tell her and keep her in the loop. She understands fully that she will never be alone, and is so comforted. I do grieve over the fact that she'll still ask about her "other house" although there isn't one; she's lived here 64 years. Thank you Caring.com for great articles and providing us caregivers a place to vent.


over 5 years ago, said...

I send prayers to all my other caregiver friends. My husband was diagnosed in April of 2001. Just took a long trip for a family emergency with my daughter driving and helping me out. Of course traveling made him much worse. He was completely lost and needed help with everything. Now that we are home he is back in familiar surroundings and doing better. Have a good day my fellow caregivers. :)


over 5 years ago, said...

I am so glad to see others using this site who may be going through the same thing I am.


almost 6 years ago, said...

thx! (some good advice on attitude). :D


almost 6 years ago, said...

Very interesting & informative.


almost 6 years ago, said...

It helped me to know I am understanding to his condition. Thank You very much.


about 6 years ago, said...

A great general outline of what to do and what to expect. I'll try to get this piece to my cousin's very reluctant sons and daughters-in-law so the "take care of you" parts become easier.


about 6 years ago, said...

Dad has been in assisted living for more than a year and is the highest functioning resident there. I'm his only caregiver other than the staff. I spend at least 4 hrs a day, six days a week with him besides taking him for all his appointments, seeing that he gets interaction with his long-time friends and doing his laundry. I have done a LOT of research on the subject of Alzheimer's. My three siblings are too far away to be of any help and I simply ignore the one troublemaker because his head is in outer space. I didn't pick up any relevant information from this article. Thanks anyway.