How to Help the Person in Your Care
Changes in memory/other thinking skills
Repetition and mistakes are obvious. An inability to form or store new memories causes a loss of immediate memory (what just happened). This causes your loved one to repeat the same questions, comments, and ideas on ever-shorter cycles. Also noticeable to others: forgetting appointments or routine tasks, losing things (or getting lost), and having trouble with names, directions, or time.
Use written reminders (to-do lists, calendars, post-it notes, a list of favorite cable channels) to minimize the number of basics that need to be remembered.
Label drawers and shelves to spare the person the challenge of figuring out what goes where or where to find things.
Use day-of-the-week or timer-driven medication dispensaries to help monitor when meds are taken.
Respond to repeated questions or statements as if you're hearing them for the first time -- even on the tenth. To break a jag, introduce a new subject ("That reminds me . . . "), or change activities or rooms.
Complex activities are not only difficult but dangerous. Lapses in judgment, indecisiveness, trouble following sequences, and memory loss make financial management and driving ) two of the biggest dangers now. Also affecting driving: poor visual-spatial skills, slowed reaction time, hesitancy.
Monitor financial records for suspicious transactions (wire transfers, mail-order bills).
Remove credit cards and key documents from wallet. Leave minimal cash and nonessential identification or cards to preserve a sense of security and dignity.
While your loved one can still make decisions that reflect personal preferences, together decide who should pay bills, file taxes, and have power of attorney for finances.
Watch for signs of dangerous driving. Rule of thumb: If you're wary of having a child be the person's passenger (or of being one yourself), it's time to insist that the driver stop.
Consider testing by a driving evaluator to help encourage an insistent driver to give up the keys. Ask your local Area Agency on Aging or the Association for Driver Rehabilitation Specialists for a referral.
Changes in emotions/insight
The world is getting smaller. Coping and compensating with brain change is hard work. Possible side effects: less spontaneity, less initiative, and a greater tendency to be a follower. Losing interest in others and withdrawing socially are common. Even if quiet, pleasant personalities seem generally unchanged, look for a tendency to get more easily frustrated or anxious and to shift moods faster.
Don't mistake self-focus for selfishness or moodiness for rudeness; they're signs of struggle with the dementia.
Encourage social outings, because the interaction is stimulating. There may be less resistance to one-on-one visits than to larger parties.
Get a doctor's input if interest seems to wane in everything about life; this indicates depression, which is different from the normal apathy of dementia.
Changes in physical function/personal care
May need help with everyday tasks. Though the person you're caring for can probably manage most personal care well, the fine-motor tasks, like managing ties and buttons, can take time. He or she may start to forget to wash hands or wipe well after toileting (inviting infection) or not drink enough (a dehydration risk). Missed or overdosed medication is another health risk.
Without taking over, step up monitoring everyday care. Quietly check laundry for signs of soiling. Use medication dispensers with days of week or timers. Make sure soap, shampoo, and toothpaste are being used.
Offer liquids with meals and in between, and don't assume the person is still making his or her own meals -- look for signs they've actually been consumed.
Casually, without talking down, offer to finish ties or other fasteners that may be giving trouble: "Here, let me try."
Don't make a big deal about mistakes or appearance quirks, since they can't be helped. Preserving pride and self-esteem serves you better.
How to Take Care of You
You'll be eaten alive by worry and stress unless you start basic self-care now. It's natural focus on the person with dementia, but the reality is that the physical toll on caregivers over time is huge. Nurturing yourself does the person with dementia a favor, because healthy people provide better care.
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.
Exercise early in the day before time runs away from you. Good home-based choices: walking (up stairs, in yard, around block), weight lifting, yoga, treadmill, and exercise DVDs.
Instead of reforming your whole diet (stressful!), start with smarter snacking. Stock fresh or dried fruits, nuts, vegetables and hummus, string cheese, popcorn, green tea, flavored waters.
Make your own routine healthcare appointments for the coming year now, so they're in your calendar.
You'll need more help over time, not less. Even if you feel on top of the "new normal" now, abilities ranging from how to make choices to how to bathe will deteriorate. No single individual can manage dementia care all the way through, all alone.
Call your local Area Agency on Aging to find out what resources are available to families dealing with dementia in your community. Really. 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's volunteered to help you or may be of help -- drivers, gardeners, errand-runners, sitters. When you're in a bind, turn to the list.
Let your employer know what's going on. Some companies offer eldercare or other work-life benefits, flextime, or dementia-specific educational resources. Legally, caregivers are considered the same at work as working parents.
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.
Try to 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, avoiding common problems, and more.
Learn the "why" behind common symptoms of dementia to help you redirect or avoid them.
Your emotional relationship with the person you are 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.
Let yourself grieve a little -- that's what you're experiencing, even during mild dementia. 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 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 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 in some way 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 medical 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 help.