Caring for Early Mild 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

During the early stages of mild 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

Forgetfulness grows obvious

Difficulty forming or storing new memories causes the loss of immediate memory (what just happened). Expect more missed appointments, misplaced objects, forgotten names or errands, momentary confusion and losing conversational threads.

Action steps:

  • Rely on supports such as lists, diaries, calendars, and notebooks to compensate for memory glitches. The key: habit. If you are caring for someone with dementia, encourage him or her to carry a small book all times, and cue him or her often to refer to it.

  • Look into cognitive-therapy programs at memory clinics; these teach people to work around deficits and process certain information better.

  • Consider enrolling in a clinical trial or other research study on dementia at a university or memory clinic, in exchange for free medical care and a chance to advance science.

  • Skip supplements such as ginkgo biloba or vitamin E, which a 2010 National Institutes of Health panel found to have no effect on memory. Drugs approved for dementia may slow the rate of decline in some people, especially when started early.

  • Spend time together labeling faces in old photos, organizing memorabilia or records, and doing other memory-based activities while you can.

Expect mistakes with money, cooking, hobbies, work

Familiar activities may frustrate, take longer, or be done poorly or incorrectly. Biggest trouble spots: things that involve multistep sequences, prioritizing, timing, judgment, concentration, and work with numbers.

Action steps:

  • Manage checkbook in tandem to double-check, watching especially for unrecorded or duplicate checks. Better: Someone else manages this entirely.

  • Remove credit cards (or lower credit limits) and key wallet documents.

  • Look for ways your loved one can modify favorite activities rather than give them up because they can't be done up to former standards.

  • Encourage the continued use of longtime skills, like typing on a keyboard, doing handicrafts, or speaking a second language. Rote skills often persist, with practice.

  • Resist the urge to step in and do things for the person; allow more time (and occasional errors).

Driving becomes increasingly difficult and dangerous

While some people with mild dementia can still pass a driving test, all will be unable to eventually. That's because driving involves multiple mental and physical processes that will decline in the coming months or years, from reaction time and problem solving to judgment, reasoning, visual-spatial skills, and memory.

Action steps:

  • Monitor the driver closely. Rule of thumb: If you're wary of having a child be the person's passenger (or of being one yourself), it's time for the person to quit.

  • Start exploring alternate transportation options. Drivers with dementia are often more open to being driven at night, on highway routes, or in unfamiliar areas.

  • To have the person evaluated objectively, contact your Department of Motor Vehicles, or ask your doctor for a referral to a driving evaluator (often an occupational therapist).

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

Fear and worry feed mood swings

Whether or not they say anything, people experiencing the onset of dementia tend to be aware that something's not right -- although they may blame aging, stress, or illness instead of dementia. Some people draw inward, others show frustration and shorter tempers.

Action steps:

  • Try not to mistake moodiness for rudeness; it's a sign of struggle with the dementia.

  • Gently encourage your loved one to name his or her concerns: "Are you worried?" "Are you scared?" But don't force conversation if he or she isn't ready.

  • Do talk about dementia, but use whatever phrasing your loved one is comfortable with: "your memory problem," "an Alzheimer's-type dementia" "brain changes."

  • Be generous with your patience. Gloss over mistakes. Assure the person you're caring for of your ongoing help and support.

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

Still handles own self-care -- help retain this

With support to reinforce existing abilities, someone who's still otherwise healthy and functioning well can extend independence.

Action steps:

  • Rely more strongly on routine. Gradually shift the day so that meals, rest periods, active periods, and bathing come in the same order and about the same time. Habit helps the brain compensate.

  • Label household or bathroom shelves, desk drawers, and other often-used storage places according to key contents. The less the brain has to work to remember these details, the more energy it has for other tasks.

  • Consider introducing items for safety's sake that may be needed later: a shower chair, bathroom grab bars, door chimes. This helps the person get used to them.

How to take care of you

Don't put yourself "on hold". This is a marathon, not a sprint.

It's natural to focus only on the person with dementia when symptoms are new. Yet you can't ignore your life for months or years. Nurturing yourself does the person with dementia a favor, because healthy people provide better care.

Action steps:

  • Don't be too quick to give up exercise routines, outings with friends, and other sources of stress release in the belief you'll get back to them when the crisis is over. You face a series of ever-changing crises -- and you need some constant sources of strength.

  • Don't keep dementia a secret from the world. Confide in at least one person to whom you can freely vent as needed. Vent privately online, too.

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

You, not the person with dementia, will have to change

Erratic behavior, repetition, and rude comments aren't being said or done 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 "You're not concentrating enough." The person 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 people who can relate, and more. Later, you may find it harder to leave the house, so start now.

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

Embrace the good days -- and prepare yourself for stormy ones

Many days still seem "normal." Enjoy them, but plan ahead. As abilities decline, no single individual can manage dementia care all the way through, all alone. Find out now who can help, just so you know.

Action steps:

  • Call your local Area Agency on Aging to find out what kinds of resources are available in your community for families dealing with dementia. You may not need them yet. But just do it.

  • If you're worrying from a distance, consider hiring a geriatric care manager who can be your eyes and ears on the ground.

  • Start a master list of everyone who volunteers to help you or may be of help "“ drivers, gardeners, errand-runners, sitters. When you're in a bind, turn to the list.

  • 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 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

Others may not see the subtle but increasing changes that you do. Or they may not want to think of their loved one as changing, because it means changes for their lives, too. Because the exact cause of dementia can't always be determined, some people choose to hear this as a lack of certainty that any impairment exists at all.

Action steps:

  • Share what you see. Regularly 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 (ideally for several days, not hours). 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 informative links 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 is often really uncertainty. People aren't mind readers. Most haven't dealt with dementia before. Yet most of us actually like to contribute in some way and don't see being asked as an intrusion.

Action steps:

  • When you make a request, 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, one handles medical research, and so on.

  • Remember that help comes in many forms: dsomeone doing something so you don't have to, relieving you so you can do other things, bringing food, doing medical research, 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 you personally. You're already doing the best you can, but try to be open to ideas that might help.

  • When someone has a complaint, invite him or her to please also help engineer a practical solution.

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

almost 2 years, said...

I keep revisiting this page - it helps remind me that I'm doing everything I can to help DH even though he is in complete denial at the moment. I feel like such a meany and have to remind myself of the 'no guilt' rule while I drag him kicking and screaming through the diagnosis process - which looks increasingly like mixed / vascular dementia at the moment (chronic ischaemic small vessel changes), probably exacerbated by a sleep disorder / apnoea. Luckily the GP is now on board and is progressing the tests I want, and has referred us to a neuropsych. This page - and many on the site - help remind me to keep going

over 2 years, said...

thank you for understanding. I am 72 years old and no relatives to ask

over 2 years, said...

This was an eye-opener. I just joined yesterday because I'm caring for my husband who has had several strokes and TIA's. I got an email wanting me to rate the level of dementia and thought I had joined the wrong group. After answering the prompts I realize that vascular dementia is something he has now and I just didn't get it!! I am sadder but this may be why so many of the behaviors that have been so troubling.

almost 3 years, said...

This was very helpful and the description of his condition is on point. I have no one who is available or family member willing to stay for 4 or 5 days. I like the reminder of being prepared for rough days after having a really good one. I hope to continue getting information and encouragement as well as offer encouragement to others. Thanks

about 3 years, said...

I indeed have been researching, reading up on all of what I can find. I have a circle starting to come together consisting of activities with helping in daily living really all and everything needed right down to making sure he remains safe and doing what it takes being to stay at home, right down to having a full care team placed. Wil u please explain start to finish and all in between, along with how, what, why. On vascular dementia. Thank You.

over 3 years, said...

More specific and practical help would be useful in terms of agency names, Medicare coverage, types of available programs etc....

over 3 years, said...

Is it common for a person with dementia to pull entirely away from their spouse.

almost 4 years, said...

My husband the love of my life has the big A mid stage. His sons have never been nice to their own Mom, totally took everything from her, now they are looking at us to take advantage of. They have never been pleasant with me or my children. They had ignored their Dad for 5 yrs and now heard he has alzheimers and come out at 11:00 PM to my home (mine before we were married and paid for) demanding to see him. I told them we were in bed. They are so scary. I have told them about the way they treat their Mom but nothing sinks in. They are one drugs I have heard. Any suggestions on how to keep them away from us.?

about 4 years, said...

Lots of good information there for me! I'm looking forward to being there for my dad and will supplement my PCA work with a couple of days a week of in-home care.

about 4 years, said...

Wow, This article was a real "eye-opener" for me. I've been taking care of my husband for 20 years now (i.e., live and kidney transplant, throat cancer, stroke, seizures, diabetes, difficulty eating) but now I am dealing with what I think is mild/moderate stage of dementia. We have an appointment with a "Memory Clinic" and I can't wait to go. I have had my fair share of caregiving with all the physical problems my husband has been through but I have to say and I have to think that this road is going to be a long, hard one. It's totally different and much harder dealing with the mental decline than with the two transplants and throat cancer. This article really opened my eyes as to how to handle certain situations. I still have a lot to learn. And I thought I had seen it all.....

over 4 years, said...

The varied action plans.

over 4 years, said...

all info was helpful, I work @ a nursing home and need to know all I can about the population I care for, in this setting I am dealing with all stages not just one.

about 5 years, said...

Everything in it!

about 5 years, said...

giving the names of online support groups... it is not easy to leave my husband and go to meetings. having an online support system or blog or whatever they are called, would be a wonderful way to share ideas and support.

about 5 years, said...

Very good consolidation of a lot of steps to anticipate. Thank you.

about 5 years, said...

-@MarLar- If u would like any suggestions,could u comment on the circumstances ur going thru, I mean what r the ages of ur friend & her children, how do u know about her fallings. Breaking ur promise will feel better then her breaking/spraining a few bones/muscels

about 5 years, said...

I am brand new to this site & just read through the comments,some that are hopeing 4 suggestions to their own difficuties.The comments date back to OVER 2 years.There is'nt any place to answer a specific question. I won't give this comment section an (F),but I will rate it a (D)

about 5 years, said...

Today I went to check on my Mother...I asked her what day it was she didn't know,whats the date Mom...she didn't know. Mom what year is it...she didn't know.just the empty look on her face made my eyes watter as she looked lost.I have never saw this look on her face before. Her phone calls have stopped and when I do talk to her on the phone our conversations are very short, she stopped taking her insulin and forgets to take her meds or doesn't take them the right way. I now check on her more often and have a nurse check her pill box. I found this web site very helpful thank you so much.I will be here often and I think I will get me a good book to read up on this condition.

about 5 years, said...

I have been diagnoised with dementia & court stipulated into a assisted liveing place here in Wis. 4 over 5 yr.s & luckily bought a l.t. & free internet, but I wish I knew how to adress the issues of liveing on my own ! male/53

about 5 years, said...

My friend has sworn me to secrecy from her family as to her falling and forgetfulness. I am now afraid that I should tell her children just how far this has gone, but hate to break my promise. How should I handle this?

over 5 years, said...

thanks for the advice it is really helpfull

over 5 years, said...

Few days later after I left a comment, my mother has turned against me and continue to let her roommate taking advantage of her... I guess there's no hope for me to help my mother anymore and I decided to draw the line and might tear up the POA and let her mess her life up.