Caring for Late Severe End Stage Dementia: A Caregiver's Guide

What to know, what to do, and how to get the help and support you need during this stage of dementia
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During the late severe end-stage of dementia, you may notice key changes in your loved one's memory, emotions, and physical state. We've provided steps you can take to help deal with dementia-related 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

It's impossible to know what's going on in there.

Cognitive functioning is minimal now. People and places go unrecognized, and your loved one may seem to stare, unseeing. End-stage vocabularies often dwindle to six intelligible words or fewer per day. Even fleeting smiles sometimes stop.

Action steps:

  • Live in the moment. Focus on keeping your loved one comfortable, safe, and well.

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

A lack of responsiveness doesn't mean the person inside is "gone."

Caregivers often detect little or no feedback at the end of the disease. But you may still be heard, your touch is felt, a sense of feeling secure can remain.

Action steps:

Talk naturally, with reassurance and respect; hearing is the last sense to go. Tell the person what he or she has meant to you.

Use touch often. Lightly touch a shoulder when you approach, caress a hand when speaking, hug.

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 is shutting down.

The risk of pneumonia, pressure ulcers (bed sores), urinary tract infections, and dehydration all spike. Eating problems usually cause weight loss.

Action steps:

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.

Ask the doctor or nursing home for a hospice evaluation and referral. Hospice care is generally for persons thought to have six months or less to live. But new guidelines give greater latitude to patients with Alzheimer's disease. Benefits include pain management, spiritual support, practical care, and emotional support for families. Even someone in a nursing home can benefit from hospice care.

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.

Learn the 10 signs death is near so you can better meet them with calm, rather than fear.

How to take care of you

End-of-life specialists are out there to help you. Now.

Enroll your loved one in hospice. The round-the-clock needs of end-stage dementia often exceed what families can handle at home without considerable support. Clergy, funeral directors, and geriatric care managers may all be able to provide specialized answers and helpful insights now -- you don't have to wait until after death to seek advice.

Action steps:

Ask your doctor, a local hospital or long-term care facility, or your local Area Agency on Aging about hospice programs near you, whether the person with dementia lives with you or in a nursing home.

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

Grieving is understandable, important, and necessary now.

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 feel sufficient, this is a great time to try the emotional outlet of a professional therapist or counselor. Hospice workers are also trained in bereavement counseling.

Your job is to support, advocate -- and live your life; the dying person controls the last breath.

Much as you may want to constantly "stand by" in case the end comes, you can't know when it will be. Meanwhile you need to be vigilant about the toll long-term stress can take.

Action steps:

Don't worry about "abandoning" the person and missing the last breath. Hospice experts believe the dying person often chooses to die when loved ones step out, in order to spare them pain.

Say all you want to say to the dying person now; there's no benefit to trying to time the last minutes.

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.

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 informally 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 reduce 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 -- on medical care, housing, finances, and final arrangements -- lie ahead. Because they're emotionally fraught, old clashes and differences that 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 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: a 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 end-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. 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 your loved one with dementia. Some things have to be experienced to be believed.

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