1. 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

2. 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

3. 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.

4. Dementia Caregiving
Maya’s
Developmental
History

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

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

7. 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.”
( ambiguous loss definition)
How do dementia caregivers experience ambiguous loss?

8. 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

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

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

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

12. 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.

13. 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

14. 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

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

16. “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

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

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

19. 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

20. 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

21. Any Questions? Abigail Nathanson, LCSW, ACS, DSW candidate
Madeline Rogers, BS, MSW candidate
Any Questions?