Caring for Mid Severe 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
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During the middle stages of severe 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

A near total loss of memory ushers in the eternal present.

Nearly all memory -- past, recent, immediate -- is inaccessible. That's why people and places go unrecognized, and even the basics of everyday life, from walking to swallowing to elimination, become more challenging.

Action steps:

Embrace the here and now. "Live in the moment" isn't a cliché; it's a way of life at this stage of dementia.

Watch body language to help you read your loved one's mind. Pursed lips may say, "I'm not hungry now." A wince when touched or moved a certain way flags pain.

Don't be surprised if even *you* go unrecognized.

Whether the primary caregiver is a spouse or an adult child, you may sometimes be rejected outright or confused for someone else: "I want my real mama." "Daddy, is that you?"

Action steps:

Grieve. It's painful. Just don't take the mix-ups personally, or think that if you had only "tried harder" or "been closer" you'd still be recognized. You wouldn't.

Go with it. If your loved one asks for her "real mama," say, "She had to step out, but I'll tell her you asked for her." No need to correct: "But your mama has been dead for 40 years!"

If the person becomes resistant to your aid (because you're not the "right" person), back off. Wait a little, and start over later. Odds are, the incident will be almost immediately forgotten.

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

The capacity for feeling emotions and being sensitive to nonverbal cues remains.

The five senses -- hearing, seeing, smelling, tasting, touching -- still work, to varying degrees, depending on individual health conditions. These are important communication pathways.

Action steps:

Use touch often. Lightly touch a shoulder when you approach, caress your loved one's hand when speaking, hug him or her.

Use fresh flowers, air freshener or potpourri, scented lotions, or favorite aftershave and colognes to stimulate and reassure.

Play music your loved one enjoys when you're not in the room or just sitting quietly.

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

The body can't remember how to do many basic things.

Dementia-caused physical decline will likely worsen now. Simple bladder incontinence, for example, may extend to bowel and bladder incontinence; difficulty walking might well extend to being bedbound; eating with assistance can turn into barely remembering to chew.

Action steps:

Break each task into smaller parts and issue prompts at every step of the way: "Now open your mouth...now close...now chew...now swallow."

Talk to your loved one's doctor about palliative care, which emphasizes pain relief and comfort care for people who aren't yet candidates for hospice.

If feeding problems develop, explore options other than feeding tubes. Feeding tubes have not been shown to prolong life and can cause both complications and emotional turmoil. Learn alternate ways to feed someone with severe dementia.

How to take care of you

Grieving is understandable, important, and necessary now.

There's no way to know how long severe-stage dementia will last, but it's the final phase of a terminal disease. Studies confirm that sadness, mood swings, longing for the past, guilt, and other dark emotions felt now -- called anticipatory grief -- are the same as "real" grief.

Action steps:

Let yourself mourn, rather than holding it in all the time. Anticipatory grief can actually soften the pain of emotions following death.

Do put on your "brave face" in front of the person with dementia, but find other places to unload your grief. Depression is a real risk now. If friends don't offer enough support, this is a great time to try the emotional outlet of a professional therapist or counselor.

You need specialized support, 24/7.

If you haven't explored out-of-home care or hospice care yet, now is the time. The round-the-clock needs of severe-stage dementia often exceed what families can handle at home without extensive (and typically expensive) support. At least check your options.

Action steps:

Call your local Area Agency on Aging to find out about severe-stage dementia housing, stepped-up home care, and hospice programs near you.

Long-distance caregivers, especially, may find a geriatric care manager handy. He or she can be your eyes and ears -- and your loved one's health advocate in a care facility.

You need and deserve guilt-free time away, more than ever.

Whether you're providing more or less hands-on care now, the emotional toll remains high. And long-term stress is especially dangerous.

Action steps:

Set aside feelings of guilt and obligation to regularly step out of an intensive-care situation. You're being smart, not traitorous. It's a health issue, plain and simple.

Consider a long-term commitment: taking a class, volunteering, or adding a part-time job. You may feel your "job" is to remain at the side of your loved one with dementia, but it's also important to set the stage now for resuming a post-caregiving life of your own.

It's not premature to begin final arrangements.

"The long good-bye" eventually ends with a permanent good-bye. Making plans for that day doesn't "jinx" anything or make you a bad person. It can actually ease stress both now and later.

Action steps:

Locate and review any end-of-life instructions that were made so you're ready: advance directives (such as a living will), funeral preferences or other final arrangements, a will.

Begin to informally discuss funeral and burial plans with immediate family. This lets you brainstorm together and work through conflicts now.

If your loved one is a veteran, explore free burial programs in national cemeteries.

Consider drafting a eulogy, obituary, and/or photo/video memorial. Contrary to being morbid, the task can actually help ease stress now (as you think about the person in a positive light) and later (because you'll have done much of the work when time constraints were less pressing).

How to build your family/support system

Others may find it easy to criticize, but hard to collaborate.

Decisions that are potentially divisive -- about medical care, housing, finances, and final arrangements -- lie ahead. Because they're emotionally fraught, whatever old clashes and differences might exist in your family may come to a head. Communication now can sidestep clashes later.

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.

Respect others' viewpoints -- everyone has a different relationship to the person with dementia. But insist that your ideas are respected as well.

Bring in third-party experts, such as a trained family mediator, to help navigate tough choices as a group. Cheaper alternative: family friend or trained clergyperson who can be neutral.

What seems like lack of support may be lack of understanding.

It's hard to relate to severe-stage dementia unless you see it firsthand. If friends and family have drifted away, they may need a nudge to provide emotional, practical, or financial aid.

Action steps:

Share what you see. As much as you can, regularly and candidly update others -- even when there's no change, it's a reminder that you're still at it. Share links about what happens in severe-stage dementia.

Encourage others to spend time with the person who has dementia. Some things have to be experienced to be believed.

Ask for what you need. Help with Medicare or Medicaid? Cheer-me-up phone calls? Be specific. People are usually grateful for a chance to help, but helpless about knowing just what to offer.