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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.