As therapists, our relationship with the families of our clients in long-term care is paramount. We realize that the families are often the clients' greatest support, their cheerleaders. The families encourage our clients to continue to be engaged in therapy. When our clients have cognitive deficits, we expect even more from the families (or significant others). We need the families to become part of the treatment, to learn to provide the environmental setup and the cueing the client needs to continue to perform at his/her best ability.
We depend on our families to carry out our recommendations and to assist with the HEPs and FMPs. We expect the families to always treat our clients with respect and understanding and to forgive our clients when they perform daily tasks with poor quality or not at all, or when they make poor judgments due to cognitive deficits.
The family member typically experiences a continuous sense of loss and subsequent grief, when his/her loved one is demonstrating symptoms of cognitive deficits due to Alzheimer's disease and related dementias (ADRD). Frequently, this grief impairs the family's ability to react appropriately and provide the support the client needs.
In 1969, psychiatrist Elisabeth Kubler-Ross introduced what became known as the five stages of grief:
- Denial—the person does not believe the news.
- Anger—the person questions why things are happening to them and not to others.
- Bargaining—the person wants to make a deal to return to the way things were. The person may feel guilty and question their part in the illness.
- Depression—the person experiences symptoms of depression; sadness, emptiness, difficulty sleeping, poor appetite, poor concentration.
- Acceptance—the person becomes more objective, accepting the changes in their loved one.
Not everyone who is grieving goes through all of these stages. Grieving does not necessarily occur in a series of stages. It is full of ups and downs. Kubler-Ross stated the stages "were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss" (2004 Kubler-Ross). Each family member may grieve in a different way or on a different time line, and often this can cause dissension among the family members.
Persons with ADRD in the early stages often have awareness of immediate memory loss, but begin to fail to understand the loss in context. For example, he/she may identify difficulty remembering names or may be losing articles frequently, but is unaware of how this pattern of memory changes may impact performance of all IADLs, driving, and child or elder care.
Often, family members perceive the client's lack of quality in performance of IADLS or poor judgment as willful. They may call their loved one lazy or state that the client no longer has the motivation to engage in valued activities. The family may blame the client for poor performance. This may lead to resistance by the family to provide the additional assistance the client requires. This reaction is often indicative of the stage of denial. It is painful for the family to accept that their loved one is declining.
At this point, it is important for therapists to understand the family's reaction and assist them in becoming educated about the disease process. The family will benefit from support groups and other community resources that the team may recommend.
As the disease progresses, families may feel angry and resentful because their loved one is requiring additional care which is impacting their routine and relationships. In addition, the client with ADRD may begin to make inappropriate comments in social situations, or become egocentric and demanding, due to the client's cognitive deficits. This behavior may embarrass and isolate caregivers, complicating their grief. The family member may feel the need to blame someone (the client or friends or family) for the injustice that has been done to him/her. It is important to remember that this angry response is a normal part of grieving; it is a normal response to the loss the family member is experiencing. Again, the family member will benefit from education and community supports.
As the person continues to decline, the person begins to lose the ability to recall relationships and histories that bind the families together. The families may also be grieving loss of intimacy and companionship with the client and the loss of social and recreational roles. The family members may feel guilty about their ambivalence about caregiving, or the thought of relief they may feel at the time of death. These feelings lead to great sadness, and often symptoms of clinical depression.
Grief is a companion to ADRD at all phases of the disease and following death. Family members need support throughout the journey of this disease. As therapists, we need to address these concerns within our treatment.
First of all, therapists must understand the disease process and the grieving process. Knowledge of the Model of Cognitive Disabilities and the Allen Level and Modes will assist the therapist in determining the cognitive level of the client and understanding the reasons for the client's behaviors.
Secondly, therapists must engage the family in education. This can be done through recommendations for educational opportunities and this can be done within the treatment session. For example, if the pt. is insisting that he/she walk without the walker because the pt. does not recognize the need for the walker, the therapist can discuss the reason for this behavior and model techniques to the family to increase the person's use of the device.
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Thirdly, therapists must recognize the symptoms or stages of the grieving process in the family members. For example, if family members present with denial or anger, it is the therapists' job to recognize their grief and provide support through our responses and community resources.
As therapists, are jobs are much more than providing treatment, developing plans, and making recommendations. Education of the family and recommendations for further supports is essential to facilitating the best treatment and carry-over of recommendations and FMPs. Without it, our client will not be able to reach his/her highest potential.
Doka, K. Grief and Dementia. Retrieved November 23, 2009 from www.hospicefoundation.org/teleconference/2004/documents/doka.pdf.
Kubler-Ross, E. (1973) On Death and Dying. New York, NY: Simon & Schuster Inc.
Kubler-Ross, E., Kessler, D. (2005) On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss. New York, NY: Simon & Schuster.
AlzOnline: Coping with Grief. Retrieved November 24, 2009 from alzonline.phhp.ufl.edu/en/reading/grief.php.
Coping with Grief and Loss Retrieved November 24, 2009 from helpguide.org/mental/grief_loss.htm.