Addressing Dementia Caregivers “Hidden Grief”
Guest Post by Eleanor Silverberg, BA Psych, MSW, RSW
Family members of people with dementia experience a series of ambiguous losses due to the nature of the disease. As the disease progresses, the cognitively impaired person psychologically disappears while remaining physically present. The 3-A Grief Intervention Approach was developed to provide a process of Acknowledging, Assessing and Assisting family caregivers through the grief that dementia family caregivers face as the disease progresses. Grief facilitation helps in strengthening resiliency and health, thus improving caregiving outcomes.
Betsy Peterson was a family caregiver for her husband with dementia. She has published writings to help other caregivers. In one article, she relayed that a health care worker had told her she was experiencing an anticipatory grief reaction to her husband’s illness. Anticipatory grief has been defined as a phenomenon which prepares individuals for the death of the terminally ill person and facilitates adaptation to bereavement. In the dementia context, Ms. Peterson expressed opposition to the term, proclaiming, “What the hell is anticipatory if your husband can no longer carry on a conversation?”
Researchers have found that rather than anticipating the eventual death, family members providing care to individuals with dementia are reacting to felt situational loss experienced in the present. Situational loss, as defined in the Mosby Medical Dictionary 8th edition (2009) includes — in addition to death — loss of a person, thing, or quality, resulting from alteration of a life situation, including changes related to illness, body image, and environment.
By acknowledging caregiver pre-death grief, family caregivers and health care workers can then assess the grief’s impact – how it is affecting the manner of providing care and caregiver well being. Denial and resistance are common especially in the early stages when the symptoms are inconsistent. Guilt and anger are other common grief symptoms. Symptoms mimic depression so caregivers presenting with grief symptoms are often diagnosed with depression and prescribed an antidepressant. Although helpful, the grief remains unresolved. Unfortunately, unresolved grief does not dissolve but rather festers until the next loss and then the reaction is magnified or the grief gets manifested in other ways such as ulcers, headaches, or more serious physical conditions.
There are many benefits to processing the grief such as empowerment, relief, comfort, peace, and truth in dealing with the core issues of loss. Health care workers can assist through recognizing the grief, acknowledging and assessing how the grief is manifesting and the impact on the caregiver’s health and manner of providing care.
By applying the 3-A components of Acknowledge, Assess, Assist, family members may assist themselves through the grieving process and potentially prevent burnout. Caregivers who acknowledge that they need further assistance can seek out individual or group counseling in grief facilitation so they may move forward positively from their situational loss.
About the author
After 15 years of experience in dementia care personally as a family caregiver and professionally as a community outreach social worker, Eleanor Silverberg, is now self-employed as a Therapeutic Counseling Specialist for Caregivers in Toronto, Ontario (Canada). She is available for speaking engagements, online and on-site counseling and training in applying the 3-A: Acknowledge, Assess, Assist Approach, which she developed. To learn more about the 3-A Grief Intervention Approach for Dementia Caregivers, visit Eleanor Silverberg’s website. To obtain a copy of her recent article write to her at firstname.lastname@example.org.