A Caregiver's Guide to Early Mild-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
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, losing conversational threads.
Rely on supports such as lists, diaries, calendars, and notebooks to compensate for memory glitches. The key: habit. Encourage the person 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.
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.
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).
Changes in emotions/insight
Fear and worry feed mood swings. Whether or not they say anything, people with early 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.
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.
Changes in 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.
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.
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.
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.
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.
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.
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.
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.