Alzheimer’s Disease and Care at the End of Life

WebMD Medical Reference in Collaboration with the Cecil G. Sheps Center at the University of North Carolina at Chapel Hill Logo for UNC Chapel Hill, Cecil G. Sheps Center

People with Alzheimer’s disease can have a good quality of life for some time. But at some point, medical care must focus on how to keep them comfortable.

It’s important to get ready for this time and make a plan before it comes. You should also know what services are available when you need them. These include medical professionals, hospice services, nursing homes, and assisted living.

End-of-Life Services

Palliative (comfort) care: This is designed to ease pain for anyone with a serious, long-term illness like dementia. It can be appropriate whether someone is dying or not.

Hospice care: This is only for people whose doctors think they have at least a 50% chance of not living more than 6 months. It’s designed to make the process of dying as comfortable as possible.

Both types of care can be given at home, in a nursing home or assisted living facility, or in a hospital. There are also special hospice homes and care centers.

Families who choose hospice or palliative care at the end of life are usually more satisfied with the quality of their loved one’s medical care. These services can help you be ready for many common issues. For example, people in hospice have better control over their pain. They’re also more likely to pass away in the place that they’ve chosen.

But keep in mind that it can be very hard for doctors to tell how long someone with advanced dementia will live. And that can make it hard to plan hospice care and have it covered by insurance.

Plan in Advance

The best way to get ready for the final stages of your loved one’s Alzheimer’s disease is to talk to them about their wishes as soon as possible. Ask what medical treatments they want or don’t want.

Help them fill out the legal documents that spell out their wishes, called advance directives. If they can’t understand, then use what you know about them to decide what they might prefer.

Some other important things you’ll need to do include:

  • Talk regularly to your loved one’s primary doctor about the outlook and timetable for their illness.
  • Get their will and other financial plans in order.
  • Decide if it would be better for your loved one to die at home or in a place like a hospital or nursing home. If you decide on home care, know that you can change your mind if it gets too hard.
  • Find out about hospice, palliative care, and other services available in your area and what your insurance will cover.
  • Decide what hospice or palliative care team you’d like to care for them. If they have Medicare, make sure the service or hospice you choose is Medicare-certified.
  • Decide which funeral home you’ll use and what the funeral plans will be.

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What to Expect at the End of Life

The way people with Alzheimer’s disease die is different from person to person, but there’s a basic pattern to the process. They slowly lose the ability to control basic body functions, such as eating, drinking, and toileting. After a while, their body shuts down.

They can’t move much on their own. They don’t want to eat or drink, and they lose weight. They often get seriously dehydrated. It can get hard for them to cough up fluid from their chest. In the last stages, many people with dementia get pneumonia.

Some other common signs that someone with Alzheimer’s disease is close to the end of their life include:

  • They speak very few or no words.
  • They’re not able to do very basic activities such as eat, move from a bed to a chair, or change their position in a bed or chair.
  • They can’t swallow well.
  • They get sores because they sit or lie in the same position for too long. These are called bedsores or pressure ulcers.

Eating Problems

It’s very common for people in the later stages of Alzheimer’s disease to lose their appetite and not want to eat. You may think about using a feeding tube, but these tend to be uncomfortable. They also cause other physical problems, so they don’t make people with dementia live longer.

Also, if you force someone to drink or take an IV, the fluid may gather in their lungs and make it hard for them to breathe. This is why doctors don’t recommend that tubes or IV fluids be used for people at the end of life.

Your loved one may need your help to eat on their own at first. Later on, it’s usually best to feed them yourself by hand. It’s important to understand that it’s normal for someone with dementia to eat or drink very little at the end of their life. Typically, this isn’t uncomfortable for them.

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Pain

It’s hard for people in the late stages of Alzheimer’s disease to communicate, so you may not be able to tell when they’re in pain. They may express their pain with sighs, grunts, or facial grimaces when they’re touched. They can become upset or aggressive.

They may sit or lie in strange positions or guard the part of their body that hurts. If they can still talk, they may say things like “not right” or “tight” to describe it. If you think your loved one is in pain, talk to their doctor right away about pain medication and other possibilities, like massage or aromatherapy.

Fever and Infection

It’s common for people in the late stages of Alzheimer’s disease to have a fever, infections, or a hard time breathing. Most people with dementia who are in the last day or two of life will have a fever or breathe fast because of dehydration and pneumonia.

If your loved one has an infection, you may wonder how much you should do to treat it. You may feel that you should take them to the hospital. But some infections like pneumonia can be treated just as well wherever they live. Your loved one’s advance directive may ask for no treatment if they’re in the process of dying.

The Last Stages

As they reach the last part of Alzheimer’s disease, most people can understand things on a basic level through their senses. You can soothe and comfort your loved one with familiar music or aromatherapy. You could give them something nice to touch and hold. You could also touch them or give them a gentle massage, or even just sit with them.

Hearing is the last sense to go, so many doctors urge you to talk to them even if they don’t respond. You can also:

  • Talk to a doctor about how to cut down on trips to the hospital, so you can focus on making your loved one comfortable as their illness goes on.
  • If you give care at home, ask your doctor or hospice nurse if you can have medications on hand for pain, breathing problems, or other issues that may come up.
  • Make sure the care team has a copy of your loved one’s advance directives and understands their wishes. If they don’t have an advance directive and can’t tell you what they want, use your best judgment to plan their care with family members and doctors.
  • If your family disagrees about the treatment plan, appoint a mediator.
  • Make sure you understand the medical care plan.
  • Write their obituary.
  • If you haven’t done so already, choose a funeral home, the location of the funeral service, a cemetery, and a burial plot.
  • Contact the people closest to them and their clergyperson if they have one, so these people can visit them if they wish.
  • Ask those around you for help and tell them exactly what you need. This might be for them to feed your pets, fix a meal, or get your mail. These things can be a big help for you and make people close to you feel good about being able to help.

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Your Own Feelings

It’s normal to be tired as your loved one goes through the last stages. It takes a lot of time and energy to care for someone with Alzheimer’s.

Tiredness from a lack of sleep, anxiety, and stress can make you burned out and depressed. Try to find time for rest. Take care of yourself. Get enough sleep, see your own doctor, and talk to those close to you about how you feel. If family or friends offer to help, take them up on it.

Talk with your doctor or a counselor about places that offer respite care to let you take some time to do other things you need to do. You might also ask about mental health counselors. Don’t be afraid to use the support that hospice and palliative care teams have for you and your family.

It’s normal to have lots of different emotions while your loved one is dying. You may feel angry, sad, or both. In late-stage dementia, most people can’t speak to or recognize people close to them. This can make it harder to say goodbye and to make peace. It may feel like you’ve been saying “goodbye” for years.

You may feel relief that the process has finally come to an end. If this happens, try not to feel guilty about this natural reaction. If you have strong emotions that bother you or you don’t understand, talk about them with someone you trust. This could be a family member, friend, clergy, doctor or nurse, or counselor.

Grief

It’s natural to grieve after a death. The process is different for everyone, and you may feel a lot of different emotions. It’s common to feel a sense of emptiness, since care of your loved one may have taken up most of your time.

Grief is different for every person, so don’t put expectations on how you should grieve or for how long. Know that resources are available to help you. This includes your friends and family who feel grief as well. Also, remember that hospice care doesn’t end when your loved one dies. It offers support and counseling to you and your family for the first year after your loved one’s death.

WebMD Medical Reference in Collaboration with the Cecil G. Sheps Center at the University of North Carolina at Chapel Hill Reviewed by Melinda Ratini, DO, MS on August 10, 2018

Sources

SOURCES:

Alzheimer’s Association: “Dementia Care Practice: Recommendations for Assisted Living Residences and Nursing Homes,” “End-of-life Decisions: Honoring the Wishes of a Person with Alzheimer’s Disease.”

Alzheimer’s Society of Canada: “Progression.”

National Hospice and Palliative Care Organization: “Caring for Persons with Alzheimer’s and Other Dementias: Guidelines for Hospice Providers,” “Commentary and Position Statement of Artificial Nutrition and Hydration.”

National Institute on Aging: “What is End-of-Life Care?”

American Behavioral Scientist: “Family Issues in End-of-Life Decision Making and End-of-Life Care.”

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