Final Stage Alzheimer’s Care: Caring for a Person in the Final Stage of Alzheimer's

Coming to terms with late stage Alzheimer’s

After a diagnosis of Alzheimer’s, patients live from eight to twenty years before reaching the end stage of the disease. The course of the illness varies from individual to individual, but the constellation of symptoms progresses from minor to severe. In the end, the diseased brain can no longer support bodily functions, leading to total dependence on others, and ultimately, death.

Accepting the impending end-of-life of a loved one with Alzheimer’s disease can take some time. Your acceptance of the person’s looming death may be only intellectual at first; later, you can accept the death emotionally. The following are some ideas to help you cope with this difficult process.

Dealing with impending end-of-life of a loved one with Alzheimer’s
Read about the course of the disease	Perform your own research, or browse Helpguide’s series on Alzheimer’s here on this site. You may also find our Related Links section helpful, available at the end of this article.
Take care of your own mental and physical health	Stay in touch with your physician and care manager. Talk about your grief with someone: a friend, a relative, a volunteer peer counselor or mental health professional. Recognize that even before the death, anticipatory grieving begins.
Find a support group	There are groups for people who are dealing with the impending death of someone with Alzheimer’s or another dementia. . If you’ve been part of a caregiver support group, it may be best to stay with it. On the other hand, you may need to find a group where end-of-life issues are the focus.
Seek out spiritual guidance, even if you are not religious.	When someone you know is dying, you are faced with considering the meaning and impermanence of life. It may be beneficial to talk with someone whose view of life and death is similar to your own, to help you explore your feelings and concerns - a member of the clergy, a mental health professional, or even a close friend. Among other things, you can discuss how you will remember the person after they are gone and how they have contributed to your life.

See Alzheimer’s Caregiver Support for support group referrals.

Providing end-of-life care at home

Caring for patient person with Alzheimer’s disease or another dementia is extremely difficult for the caregiver, so much so that many caregivers look forward to the end of the caregiving. A person who is dying of Alzheimer’s disease requires help with the most basic of bodily functions, such as sitting up and toileting. In addition, the patient can no longer respond to the care and cannot indicate comfort or discomfort. It’s especially at this stage of caregiving that outside help is needed. It may be best to have the patient placed in a facility for end-of-life care. On the other hand, if the patient qualifies for a hospice program, a visiting nurse and other home care professionals can provide the support services needed so the patient can die at home.

See Hospice Care: Full-Service Support at Home or in a Facility.

Keeping an Alzheimer’s patient peaceful and comfortable

The end of life requires special care, particularly because the dementia patient can no longer give you verbal or nonverbal feedback about how they feel. A person close to death may experience certain symptoms – pain, difficulty breathing, lack of interest in eating or drinking, or pressure sores (bedsores). Remember that for these and any other issues around end-of-life care you can always turn to helping professionals who can provide you guidance and hands-on assistance in caring for the dying patient.

Pain Control

If it seems the person cannot communicate to you about pain or discomfort, a good indication is if the patient seems more agitated or confused than before, or otherwise shows a change in behavior. Consult with medical personnel to assess the causes of pain and possible treatments, and be an advocate for the patient when necessary. Professionals have an obligation to relieve pain in the dying patient. Pain medication ranges from over-the-counter analgesics to prescription drugs such as morphine. Sometimes a combination of such medications is best. Be wary of artificial hydration near death, as it can increase pain, if pain is due to inflammation.

In addition to medications, alternative means can provide pain control for patients who can hear and respond:

Guided mental imagery
Hypnosis
Relaxation
Counseling for stress and anxiety
Spiritual support

Difficulty Breathing

It is normal for a dying patient to become more congested and to have trouble breathing. Consult with the patient’s doctor or visiting nurse about helping the patient to breathe more easily. Suctioning may only serve to increase secretions and cause more pain, so do not push for suctioning. It is best to turn the patient’s head to the side to let any moisture drain from the mouth. You may then help by dabbing the mouth with a moist cloth. Be wary of artificial feeding, as it can increase breathing difficulties.

Lack of interest in eating or drinking

A dying patient commonly loses interest in eating and drinking, and you should no longer worry about nutrition and hydration. Talk to medical personnel to determine if the patient has reached this point. Doctors will look for possible underlying causes of not eating or drinking (such as constipation, nausea, pain, or stomach inflammation), and then advise you about what to do. If the patient is not really near death, changing the way the feeding is done or changing caregivers may be the key for the patient to resume eating.

If the patient is close to dying, neither food nor hydration is necessary for comfort. Nor will food help the patient to be stronger or to delay death. The person’s organ systems are shutting down and can no longer process nutrients. Artificial feeding can cause increased breathing problems and may lead to pneumonia. Artificial hydration can worsen swelling and increase any pain due to inflammation. Each family must come to terms with this situation in their own way, but once feeding and hydration have stopped, family members can ease the transition to death by being close by, touching the patient, and talking to the patient.

The only discomfort associated with not drinking fluids is dry mouth. To treat dry mouth, try the following:

Swab the inside of the mouth with water-soaked cotton swabs
Spoon a few tiny ice chips into the patient’s mouth
Apply lip salve
Dab the mouth with glycerin swabs to keep it moist
Brush the person’s teeth, for a fresh mouth feeling

See Managing Behavior Problems .

Pressure sores (bedsores)

If the patient is bed-bound and not turned regularly into different positions, they can develop bedsores, or “pressure sores.” This is a form of skin breakdown that can become infected and very painful. Turning the patient in bed every two hours and helping them to walk or move their arms and legs can help prevent bedsores. A special kind of inflated air-suspension bed is available to help the patient who experiences too much pain when their body is moved.

How do I decide about providing life support?

During the final stage of Alzheimer’s disease or another dementia, you may be confronted with making a decision about whether to provide life support. Hopefully, in an earlier stage, you discussed with the patient their preferences about end-of-life care and life support. If so, it’s simply a matter of implementing the patient’s wishes. If you have not had this discussion early in the course of the disease, you will have to make the decision about life support without knowing the explicit wishes of the patient. This can be a very uncomfortable dilemma, complicated by the difficulty of letting go of your loved one. By consulting with medical personnel and other experts, with family members and Alzheimer’s support organizations, you have the best chance of coming to a decision that you can feel okay about.

Communicating with a late stage Alzheimer’s patient

In the early stages of Alzheimer’s or another dementia, the patient may be able to speak to you about the prognosis of death. If a person with a terminal illness says he or she is ready to die, the patient may have reached a calm acceptance of reality. At this point, don’t argue; listen to your loved one’s expression of feelings.
If talk of the impending death is more uncomfortable for you than for the patient, talk to a hotline staff member, a care manager or counselor, or your spiritual guide.

When the patient is unable to communicate

As Alzheimer’s disease progresses to its later stages, the patient will have no way to communicate to you how they feel. You may see no response to care or to the environment. In the last stages, the person cannot even respond to sensory input, so you really will not know if something makes them feel comfortable or uncomfortable. The best way to care for a person who is unable to give you feedback is to:

Trust your instincts. You have been close to the patient and known the patient for a long time, and often will just know what to do.
Seek advice and support
- Consult with the doctor and care manager regularly
- Contact support organizations that can offer tips about making a non-communicative patient comfortable. This might include a home health care agency.
- Call Alzheimer’s hotlines for questions about specific issues or for emotional support.
Continue to implement self-care strategies so that you are in a healthy decision-making state. Stay in touch with close friends or family members, and rely on other forms of practical and emotional support that have gotten you this far.

In the end stage of Alzheimer’s, the person will be unable to talk at all. During the last weeks or days of the disease, you may notice a nonverbal indication of willingness to let go of life. The person is communicating their readiness to die. This is a positive way of ending their life.

Coping with the death and dying of a loved one

Relating to a loved one during the final hours

In most cases, patients and families both benefit from close human contact around the time of death. The best guideline is to think of what you and the patient would be comfortable with under other circumstances. Talking to the patient and touching or holding them are fine, if that feels like the natural thing to do. Some of these actions are for you, and some are for the patient. Even when a patient doesn’t respond it’s possible that there is still an awareness of what is going on around them. Assume the dying person can hear you. Speak to them in a quiet, normal tone, and say what you can to support and comfort the person. Professionals who work with the dying can usually tell you when death is near. If it feels right to you, you can talk to the person in such a way that allows them to let go of life.

Dealing with your feelings after the death of a loved one

Even though the caregiver has experienced anticipatory grief and knows the death will occur, the actual event triggers a new kind of grief. There may be some sense of relief mixed in with the sense of loss. It’s important to allow yourself the time you need to mourn, to review, and to gradually come to terms with the loss of your loved one. This can be a long, slow process with many ups and downs. Counselors and support groups are available to help you through this difficult time.

Learn about after-death coping strategies in Coping with Grief and Loss and Supporting someone who is grieving

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Topics

Late Stage and End-of-life Alzheimer’s Care

CARING FOR A PERSON IN THE FINAL STAGES OF ALZHEIMER’S DISEASE

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