Losing a loved one brings on grief and other complex feelings, but caregivers of people with terminal diseases may experience similar emotions well before the person passes away. This phenomenon, known as anticipatory grief, can be just as intense as bereavement following the death of a close relative or friend-sometimes more so, psychologists say.
Individuals who serve as informal caregivers for people with Alzheimer’s disease (AD) and other forms of dementia may experience a unique version of anticipatory grief. Some experts use the phrase “dementia grief” when the condition affects people caring for patients with AD or related cognitive diseases. (Anticipatory grief is also known more generally as pre-death grief.) Studies suggest that people who have pre-death grief are at increased risk for developing a long-lasting condition called complicated grief, or persistent complex bereavement disorder.
Issues unique to dementia caregivers
Some feelings of loss appear to be unique to caregivers of dementia patients. The memory loss and personality changes that occur in a person with dementia can leave an informal caregiver feeling like the person he or she is caring for is already gone-that while the person being cared for is physically present, psychologically he or she is no longer the same person. Psychologists refer to this phenomenon as ambiguous loss. Many caregivers of dementia patients say they feel a lost sense of companionship and intimacy.
Another difference between caregivers of loved ones with dementia and caregivers of those with other types of terminal illnesses centers on the opportunity for a final farewell. For the latter group, saying goodbye can involve expressions of love and the resolution of past conflicts or complex feelings. But that might not be possible with someone with dementia, who may lack the ability to reason or communicate in a lucid way.
Psychologists caution that feelings of grief are often most intense at the time of diagnosis and as the death of the person with dementia nears. Feelings may also be intense when transitioning a loved one to a healthcare facility. That said, the feelings of depression and sense of burden that are part of anticipatory grief often subside once the person with dementia is receiving full-time professional care.
Some people may be reluctant to admit they feel grief prior to the passing of a loved one, but the Alzheimer’s Association and other organizations that support individuals with dementia and their families emphasize that anticipatory grief is common and completely normal.
A 2016 study in the journal Aging & Mental Health suggests that a form of psychotherapy known as cognitive behavioral therapy (CBT) may help ease some of the emotional burden that caregivers of dementia patients experience. In CBT, a mental health counselor helps the client identify and eliminate negative thought patterns, which allows that person to respond to life’s challenges in a more constructive manner.
Other steps that can make anticipatory grief more manageable include:
- Asking friends or family for assistance and emotional support.
- Trying to “live in the moment” and not focus on the future.
- Appreciating what your loved one can still offer, whether it be holding hands or giving a hug.
- Accepting that at some point you may not be able to handle the patient’s needs, and that he or she may need the full-time care available in a nursing facility.
Why getting help matters
Taking steps to ease the emotional pain of caring for a loved one with AD is wise, particularly since people who have anticipatory grief are at increased risk for complicated grief. This severe form of grief occurs in approximately 20 percent of people who care for individuals with dementia. It can cause distracting thoughts, an inability to accept the loss of the loved one, and other problems once that loved one dies.
If you’re having trouble with anticipatory grief or any other emotional burdens associated with caregiving for someone with AD, talk to your doctor. She or he can refer you to support groups and professional counseling.