Caring for Late Moderate 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 later stage of moderate 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

Memories of childhood and the distant past dominate

Early memories can be amazingly strong, to the point of getting mixed up in the present in surprising ways. One person may feel an urgent need to "get to the office," while another awaits a visit from a long-dead relative.

Action steps:

  • Take advantage of happy old memories to win trust before difficult tasks (bathing, doctor visit) and to soothe during them. Topics women often like talking about include weddings and children; men often warm to sports talk.

  • Go along with mistaken beliefs or endless repetitions rather than correcting. They're usually harmless and a form of self-soothing.

  • Use distraction (change of scenery, amusing stories) to wind down or distract from mistaken beliefs as needed.

Strange things can happen as disorientation extends to everyday objects, faces, and places

The person you're caring for may not reliably recognize a TV remote, an adult child, or the place where he or she is living. Expect mix-ups (brushing hair with toothbrush), delusions[item://delusions-with-dementia] (false beliefs), and hallucinations (seeing, hearing, or smelling something that's not there).

Action steps:

  • Set aside your best logic to correct or disprove; he or she can't follow it.

  • If the belief is frightening, work to calm him or her.

  • Use actions (turning on the TV) rather than words ("That's a TV remote!").

  • If hallucinations are new or follow a trauma (hospitalization), tell the doctor immediately, as they could be caused by a medication or infection.

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

Imagination or suspicion may be used to explain away what logic can no longer figure out.

This is a common way the brain copes as awareness of having dementia fades. Lost glasses have been "stolen." An aide or visitor is proof a spouse is having an "affair." A request is a "trick."

Action steps:

  • Don't bother defending yourself or others against wacky accusations. Rationalizing is impossible. Better to agree (or ignore) and distract.

  • Do assure the accused you know he or she is innocent. Remind your loved one that it's the dementia talking.

  • Do assure yourself, of course, of the facts. Elder abuse and rip-offs do happen.

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

Sleep disruptions can disrupt an entire household

Beginning in late afternoon, restlessness can brew into sundown syndrome, where the person becomes upset and unable to sleep. Variations: sleeping too much by day and awakening at night, catnapping 'round the clock.

Action steps:

  • Even if excessive day sleeping makes life easier for you, discourage it, because you'll pay at night. Encourage movement, fresh air, and frequent light meals.

  • Manage night wandering with basic safety steps, like adding door locks or chimes, removing scatter rugs, getting wearable ID.

  • Don't let disrupted sleep go on for weeks; your health will suffer. In extreme cases, ask the doctor about sleep or antianxiety medication for the sundowning person.

Take grooming and bathing slowly -- and safely

As the brain and body fail to communicate well, it takes longer to coordinate the necessary movements for dressing, bathing, toileting, and getting into a car or seat.

Action steps:

  • Give lots of prompts for each step, 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).

  • Learn how to manage incontinence, which is a leading cause of out-of-home placement.

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, or vent 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.

Call in the cavalry

No single individual can manage dementia care all the way through, all alone. And as hard as things are now, this is still the just the late 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 away from home).

  • Begin to research "what if" [housing options] In the future event 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 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, "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," it's not too late to join 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]common symptoms of dementia to help you redirect or avoid them.

Your emotional relationship with the person you're caring 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.

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, photograph albums) or disrupted future plans (retirement, travel) can be unnecessarily painful.

  • Embrace the good moments that still lie ahead. Dementia doesn't erase all 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 your loved one 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 and financial matters, another handles alternate housing research, and so on.

  • Remember that help comes in many forms: somebody 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.