Nov 9, 2016

Alzheimer's Care and Grief, Types, Stages and Symptoms

Anticipatory grief occurs when a person is expecting a loss, such as the impending death of a loved one. This is especially difficult for Alzheimer’s caregivers, since several years typically pass between the diagnosis and the person’s eventual death.


Caregivers often experience grief when a dementia patients dies | Alzheimer's Reading Room

By Marie Marley
Alzheimer's Reading Room

All Alzheimer’s caregivers experience grief sooner or later unless by chance their loved one outlives them.

This article provides an important and easily understandable introduction to grief—the types, states and symptoms Alzheimer’s caregivers will most likely have to face.


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Types of Grief


1. Mourning the Loss of the “Person Who Was.” This is a type of grief particularly strong for caregivers of people who are living with Alzheimer’s. It is prompted by the loved one’s personality changes and deterioration of cognitive ability. Caregivers can fall into a deep state of despair as their loved one declines.


2. Anticipatory grief, which doesn’t always occur, is that which occurs when a person is expecting a loss, such as the impending death of a loved one. This is especially difficult for Alzheimer’s caregivers, since several years typically pass between the diagnosis and the person’s eventual death. According to an excellent article on the Family Caregiver Alliance website, “anticipatory grief is a way of allowing us to prepare emotionally for the inevitable.”

3. Grieving Upon the Person’s Death. This type of grief is pretty much the same for Alzheimer’s caregivers as it is for anyone else experiencing the death of a loved one. But sometimes it is even more difficult for those caring for a person who has Alzheimer’s since the person may have been grieving for his or her loved one (through anticipatory grief) for a considerable amount of time before the loved one even dies.

4. Complicated Grief. This is sometimes called “unresolved grief,” or “chronic grief.” The normal grieving process can last anywhere from a few months to several years. However, it becomes “complicated” when it lasts for an unusually long time and seriously hampers one’s ability to function in daily life. It may include drug and alcohol abuse—substances the person uses for self-medication. It may also appear as severe depression or even thoughts of suicide. Complicated grief usually requires professional help from a psychiatrist or primary care doctor and/or a psychotherapist.


Stages of Grief


Elisabeth Kübler-Ross, now deceased, put forth five stages of grief in her landmark book, “Death and Dying.” For this article, I interviewed Dianne Gray, President of the Elizabeth Kübler-Ross Foundation.

Ms. Gray told me, “These stages are just a framework—not a rigid set of stages everyone follows.” Ms. Gray continued, “Each person’s grief is unique. People don’t usually pass through the stages in order. And they typically go back and forth between them. They may also revisit one or more stages one or even several times, depending on what’s going on in their lives.”

The details for the five stages given below are taken from the article on the Family Caregiver Alliance website.

1. Shock/denial. Trouble accepting the fact of death, diagnosis or new reality, or numbness.

2. Anger. Anger toward yourself, others, professionals (particularly doctors), God, and life.

3. Bargaining.  Making “deals” with God or friends—hoping to change the situation, thinking about “what could have been,” or things you “should have done differently.”

4. Depression. Feeling overwhelmed with loss and change, sadness, regret, fear, or anxiety.

5. Acceptance. Adjusting to the new reality, starting to move on, or having a sense of hope, healing and integration


Symptoms of Grief

The Family Caregiver Alliance article lists the symptoms of grief given below. It states that “Grief affects our whole being—physically, socially, emotionally and spiritually.”

Physical Symptoms. Crying, low energy/exhaustion/weakness/fatigue, headaches, sleep disturbances, pushing yourself to do too much, and self-destructive activities such as drinking too much or using illegal drugs.

Social Symptoms. Feeling alone, wanting to isolate yourself from socializing, being pushed to be social by others, feeling detached from others, being angry that others’ lives are going on as usual and yours isn’t, or not wanting to be alone.

Emotional Symptoms. Sadness, crying spells, anger/frustration/rage, confusion, feeling overwhelmed, guilt, worry/anxiety/panic, irritability, memory problems, depression (or its opposite—euphoria).

Spiritual Symptoms. Questioning your faith or the meaning of life, questioning the reason for the loved one’s death, feeling angry at God, or coming closer to faith/God for solace.

It’s important to realize that all these symptoms are normal. You should not feel guilty about them or ashamed of them. They will resolve with time.

Although the symptoms may seem completely overwhelming at times, Ms. Gray said, “You won’t die from the pain. It’s shocking how much pain we can endure.”


My Experience With Grief


After my life partner, Ed, received his diagnosis of Alzheimer’s I was completely consumed with anticipatory grief. And I was overwhelmed by the idea that my grief would continue for years before he would die, and then I’d have to start grieving all over again.

After Ed passed away, my grief was at first crippling, then resolved very slowly. Three years later, when I suddenly realized one day that the anniversary of his death had passed without me remembering it, I became aware that my grief was largely gone. After that, memories of Ed sometimes gave me pleasure rather than pain.

This is the first of a series of three articles on grief. Today’s article presents an introduction to grief—the types, stages and symptoms. The second article will provide 10 practical tips for dealing with grief. The last one will discuss 10 simple, concrete ways to help people who are grieving (both adults and children).

How to Get Answers To Your Questions About Alzheimer's and Dementia



Marie Marley is the award-winning author of “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,” and co-author (with neurologist, Daniel C. Potts, MD, FAAN) of “Finding Joy in Alzheimer’s: New Hope for Caregivers”.  Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

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