Caregiver guide
End stage dementia signs and symptoms, and how to give comfort
End stage dementia signs and symptoms include being unable to walk or speak, needing help with all daily care, sleeping most of the day and having trouble eating and swallowing. At this stage, the goal of care shifts to comfort, and hospice can help you and your person through it.
When you're facing the final stage
If you're reading this, you may be sitting beside someone you love and wondering what comes next. Many caregivers tell us they didn't know dementia could go this far, or that no one told them what the end would look like.
Knowing what to expect won't make it easy. But it can help you feel less frightened, make clear choices and spend this time the way you want to.
This guide is general information. Every person's path is different. Your person's doctor and a hospice team can tell you what is happening in your situation.
What are the signs and symptoms of end stage dementia?
End stage, also called late-stage or severe dementia, is the last stage of the disease. Changes often come slowly, then sometimes quickly. Common signs include:
Can't walk or move alone
Your person may need help to sit up, turn in bed or hold up their head, and may spend most of the day in bed or a chair.
Little or no speech
Words may be few or gone. Your person may still respond to your voice, touch, music or a smile.
Needs help with everything
Eating, bathing, dressing and using the toilet all need full help. Loss of bladder and bowel control is common.
Eating and swallowing problems
Less appetite, coughing or choking on food and drink, and weight loss.
Sleeping most of the time
Long hours of sleep and less awareness of what's around them.
More infections
Pneumonia, bladder infections and skin sores become more common as the body weakens.
How do you know when someone with dementia is close to dying?
In the last weeks and days, you may notice some of these changes. Not everyone has all of them.
- Sleeping nearly all the time and being hard to wake
- Eating and drinking very little, or not at all
- Changes in breathing, such as long pauses, fast breaths or a rattling sound
- Hands, feet, knees or lips that feel cool or look blotchy or bluish
- Less urine, and darker in color
- Reaching out, picking at sheets or seeming restless
- Responding less to voices and touch
These signs are a natural part of the body slowing down. They aren't usually painful in themselves. A hospice nurse can tell you what each change means and help keep your person comfortable.
What happens in the last days of dementia?
In the last days, your person will likely sleep most of the time. Breathing may change, and they may stop eating and drinking. Some people seem peaceful. Others seem restless, and the care team can help with that.
Hearing is thought to be one of the last senses to fade. Keep talking to your person. Hold their hand. Play the music they love. Tell them what's in your heart, even if you're not sure they understand. Saying goodbye matters, for them and for you.
Some people have a short burst of alertness near the end. They may seem clearer, speak a few words or ask for food. This is sometimes called a rally or "surge." It can be a gift. It usually doesn't mean your person is getting better.
How long does end stage dementia last?
No one can say for sure. The final stage can last from a few weeks to a couple of years. Age, the type of dementia, other health problems, infections and how well your person can eat and drink all play a part.
If you want to know where your person is in the disease, ask their doctor or a hospice team for an evaluation. They can't give an exact date, but they can tell you what they're seeing.
You may have heard of the 7 stages of dementia before death. Many doctors use a scale that runs from stage 1 (no symptoms) to stage 7 (very severe decline, when a person loses speech and the ability to walk). End stage dementia matches stage 7. Read more about the stages in our Alzheimer's and dementia FAQ.
End stage dementia and not eating
Watching someone you love stop eating is one of the hardest parts of the end stage. It can feel like you're failing them.
Near the end, the body needs less food. Swallowing gets harder, and the brain may stop sending hunger signals. This is part of the disease, not something you caused.
Ways to help:
- Offer small bites and sips when your person is awake and alert.
- Try soft foods, thickened drinks or favorite flavors.
- Sit your person upright when eating.
- Keep lips and mouth moist with a damp swab or lip balm if they stop drinking.
- Don't force food. It can cause choking or pneumonia.
Ask the doctor or hospice team before making big choices about feeding. See the question about feeding tubes below.
Making treatment decisions
In the end stage, many families start asking a new question: will this treatment help my person feel better, or just keep them going longer?
It's okay to think about quality of life. You might try a treatment for a short time and stop if it isn't helping. You might decide some tests, hospital trips or medicines aren't worth the stress they cause. Talk with the doctor about the benefits, side effects and risks of each choice.
These decisions are easier when your person has shared their wishes ahead of time. A living will and a health care power of attorney put those wishes in writing. If you haven't done this yet, read our guide to power of attorney for dementia and legal planning.
Comfort at the end of life
Your person may not be able to tell you what they need. You can still bring comfort through the senses.
- Touch: hold hands, stroke their hair, give a gentle hand or foot massage.
- Sound: play favorite songs, hymns or nature sounds. Read aloud or just talk. ADRC's free Harmony in Care Music Box Initiative gives care partners simple instruments and music ideas.
- Sight: soft light, family photos, a view of the window.
- Smell: a familiar lotion or the scent of something they love.
- Body comfort: turn your person every few hours, keep skin clean and dry, and keep the mouth moist.
If your person cries out, grimaces or seems restless, it may be pain. Tell the doctor or hospice nurse. They can help find the cause and treat it.
Hospice and palliative care for dementia
Palliative care focuses on comfort and quality of life. It can start at any stage, alongside other treatment.
Hospice care is for people near the end of life. The team, which may include nurses, aides, social workers and chaplains, comes to your home, assisted living or nursing home. They help manage pain and other symptoms, bring supplies and equipment, and support the whole family. After your person dies, hospice offers grief support.
Many families say they wish they had called hospice sooner. You can ask your person's doctor for a hospice evaluation at any time. ADRC can share hospice options in Central Florida through our Information & Referral service.
If your person lives in a nursing home, they keep their rights to dignity, comfort and a say in their care through the very end. Learn about nursing home residents' rights.
Taking care of your own feelings
You may be grieving long before your person dies. That's normal. Many caregivers feel sad, angry, numb or exhausted, sometimes all in the same hour.
When your person dies, you may also feel relief: relief that they're no longer struggling, and that the hard work of caregiving is over. Then guilt may follow the relief. All of these feelings are normal, and none of them mean you loved your person any less.
Lean on people who understand. ADRC's free caregiver support groups welcome caregivers at every stage, including after a loss. Our Renewed Care devotional offers a moment of encouragement each week, and our guide to caregiver self-care has practical ideas for getting through.
If your family is thinking about brain donation to help dementia research, registration has to happen well before death. Learn about the State of Florida Brain Bank.
Based in part on National Institute on Aging guidance.
Questions about end stage dementia
What is the life expectancy for someone with dementia at age 80?
There's no single number. How long a person lives with dementia depends on their age, the type of dementia, how far along it is and their other health problems. Some people live many years after diagnosis. Ask your person's doctor what they expect in your person's case.
What is the surge before death in dementia?
Some people have a short time of unusual alertness in the days or hours before death. They may talk, recognize family or ask for food. It's sometimes called a rally or surge. It usually doesn't last, but many families treasure it.
Should we use a feeding tube in end stage dementia?
This is a personal decision to make with your person's doctor. Studies in advanced dementia haven't shown that feeding tubes help people live longer or feel more comfortable, and many experts suggest careful hand feeding instead. Your person's written wishes, if they have them, should guide you.
When should we call hospice for dementia?
Consider asking for a hospice evaluation when your person can't walk, speak or eat much on their own, is losing weight or keeps getting infections. You don't have to wait for a crisis. The doctor can make a referral.
Why does someone with end stage dementia cry or call out?
It can be a sign of pain, hunger, thirst, being too hot or cold, needing to be changed or simply feeling scared. Check for simple causes first, then tell the doctor or hospice nurse, especially if it's new.
Can a person with end stage dementia still hear me?
They may. Hearing is thought to last longer than other senses. Keep talking, singing and touching your person gently. Your voice can be a comfort even when they can't answer.
Is it normal to feel relief when my person with dementia dies?
Yes. After a long illness, relief is a very common feeling, and so is guilt about feeling relieved. Both are normal. Talking with other caregivers in a support group can help.
Can my person die at home?
Many people with dementia die at home with hospice support. Hospice can bring a hospital bed and supplies, and nurses can visit and answer calls day and night. Talk with your family and the doctor about what's possible for you.
Download the free guide
The National Institute on Aging's tip sheet on end-of-life care is short enough to read at the bedside and share with family.
You don't have to face this alone
Alzheimer's & Dementia Resource Center (ADRC)
- Monday to Friday: 8:30 AM to 4:30 PM
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park, Florida, offers free help for caregivers in Orange and Seminole counties, including hospice referrals and support groups; call (407) 436-7750. In an emergency, call 911. The Alzheimer's Association 24/7 Helpline is 800-272-3900.