When Ambiguity Ends: Grieving the Losses of Dementia Caregiving After A Death Abigail Nathanson, LCSW, ACS, DSW Candidate Madeline Rogers, BS, MSW Candidate This Photo by Unknown Author is licensed under CC BY-NC-ND

Participants will be able to identify the kinds of ambiguous losses that dementia caregivers face. Participants will be able to understand the unique aspects of bereavement that dementia caregivers face. Participants will be able to better support dementia caregivers in navigating their bereavement process after the death of the person with dementia. Objectives

Maya sought out CaringKind for help in dealing with her grief, following the death of her mother from dementia a few months prior. She said she was interested in volunteer opportunities to help other dementia caregivers, too.

Dementia Caregiving Maya’s Developmental History

Caring For Someone with Dementia Nature of Dementia Logistical Demands Emotional Demands

Caring For Someone with Dementia Impacts on Caregiver’s Life Attachment Themes

How do dementia caregivers experience ambiguous loss?  ”All losses are touched with ambiguity, yet those who suffer ambiguous loss, losses without finality or resolution, bear a particular and challenging burden… With the experience of caring for a parent who is suffering from Alzheimer’s disease the experience of loss is magnified and is more significantly challenging to overcome because the loss is linked to a lack of closure.   People who experience and live with an ambiguous loss find it hard to understand their situation, difficult to cope and almost impossible to move ahead with their lives without professional counseling, love and support.” (https://www.ambiguousloss.com/biography.php- ambiguous loss definition) How do dementia caregivers experience ambiguous loss?

Grief in Dementia Caregiving: A New Normal Ambiguous losses often yield a feeling of disconnect When loss becomes concrete, upon death, many caregivers struggle to cope “Thank God it’s over” or “I thought I was done” or “Why am I still upset?” or “Shouldn’t I be sadder?” How anticipatory grief is different

Joining a Play in the Second Act: Grief following Dementia Caregiving

Maya’s History Childhood Adulthood Relationship with mother Relationship with father Development of self Caregiving x12 years Meeting own needs Relationships

Maya’s Perspectives Self Maya Others World How does Maya’s history of engagement affect her caregiving and grief?

Maya as a caregiver Caregiver x12 years Meaning-making in caregiving Purpose and identity afterwards Ambivalence explored Psychological Patterns/ Role of Defenses/ Identity Maya often reported that she has not regrets about her role as a caregiver and that she would do it all over again. Burden: Maya spoke of how she was not able to date and start a family while caregiving for her mother, and her desire to do that now.

Maya’s Presenting Problem Am I grieving right? The “non-grief” reaction: Not thinking about her mother Not crying Not feeling sad Her solution: Help other caregivers Learn to grieve “correctly” Symptoms/ Help seeking for self/ Help seeking for other/Want to be done&correct Maya reported knowing that there is no ‘right or wrong way to grieve’ but being displeased with the current grieving process Maya reported thinking that she should be thinking of her mother on a daily basis

Maya in individual counseling Maya had four individual counseling sessions before the bereavement group start date Maya’s goals in individual counseling were to: find a reason for why she was not feeling “sadder” look for signs that she has been grieving explore her siblings’ grief I had 4 individual sessions with Maya before the bereavement group began Maya reported that her siblings grief also seemed to be a non-grief reaction This Photo by Unknown Author is licensed under CC BY-SA

Maya in individual counseling Important interventions for these presenting concerns: Normalization Validation Psycho-education Effectiveness of normalization from social worker Anticipation of group setting

“A Million Goodbyes”: Why Dementia Bereavement Groups Matter “Rife with ambiguity, losses that cannot be clarified or verified become traumatic, but they can be discussed in community with others to gain meaning and hope.” Dr. Pauline Boss This Photo by Unknown Author is licensed under CC BY-NC-ND

The Bereavement Group Intervention Structure of bereavement group program Other participants Nature of co-leadership

Maya in the Group: How She Presented Her narrative Role in group Attendance Maya in the Group: How She Presented

Maya in the Group: The Turning Point Personalization of problem: How do I grieve? How do I know what to do? Normalization through group Externalization of problem: What if this is all grief? Group experience afterwards Maya in the Group: The Turning Point

Final Assessment Concrete losses vs ambiguous losses Goals of grief integration following dementia caregiving Importance of group process for dementia caregivers Recommendations for practice Maya’s long-term coping & a future support group leader

Any Questions? Abigail Nathanson, LCSW, ACS, DSW candidate abigailnath@gmail.com Madeline Rogers, BS, MSW candidate madelinecrogers@gmail.com Any Questions?