Grief and Dementia

Grief is not the most festive topic for this time of year, but ignoring it actually multiplies its impact. We in memory care world have learned more than one blog can capture. As the pandemic winds down, we are confronted by a disproportionate amount of loss and grief.

Grief and dementia have long been a subject of research. Early comparison of grief from cancer caregivers and dementia caregivers found that post-death dementia caregivers experienced more relief than grief. Some have called the dementia journey a long good-bye. The counterparts are those who reference the long hello.

This difference in approach may well be reflecting stage. Research shows that grief and burden work hand-in-hand, with higher levels of grief and burden affecting caregiver depression.1 Another study clarifies that this is particularly true for spousal caregivers caring for later stage dementia. Looking at anticipatory grief, the study compared spousal and adult children caregivers of earlier and later stage dementias.2 Caregiver burden, a term that encompasses the overload a caregiver feels in his/her care role, was found to be higher for late-stage spousal caregivers. Anticipatory grief was directly associated with stage, role and level of burden.

Anticipatory grief is the term given to the symptoms of grief that come before the death of the person. Whether drug addiction, other diseases, or dementia—anticipatory grief is experienced as a person watches the loss of function, independence, and personality by degrees and over time.3

Equally applicable to the grief experienced by a dementia caregiver is ambiguous grief. This is conflicted grief, the differential the between glass half full days and the glass half empty days. The divide between Long Hello and Long Good-bye. As a care partner the ambiguity makes you question your own cognitive health.

So, what do we do with this grief, anticipatory or ambivalent? How do we process?       

First, accept that both of you are grieving. As in so many change strategies—the first step is admission. Realize that this is normal; validated in research even.

Give you and your care partner permission to recognize the losses. By doing so, you might free yourself enough to see the good in the day-to-day.

  • Seek others walking the same path. Try a virtual support group; a memory café; call an expert who can hook you into others with similar experience.
  • Remember the past in order to bolster your stamina for the present. The same annoying behavior today is planted in the past as a positive. The husband who over-thinks each decision today in a perseverative way was the engineer who designed buildings; the mother who was super-mom or the friend that never forgot a holiday card.

Whether your glass is half full or half empty hour by hour, recognizing grief is the first step to refilling it.

1Liew TM, Tai BC, Yap P, Koh GC. Comparing the Effects of Grief and Burden on Caregiver Depression in Dementia Caregiving: A Longitudinal Path Analysis over 2.5 Years. J Am Med Dir Assoc. 2019 Aug;20(8):977-983.e4. doi: 10.1016/j.jamda.2018.11.016. Epub 2019 Jan 25. PMID: 30692034.

2Cheung DSK, Ho KHM, Cheung TF, Lam SC, Tse MMY. Anticipatory grief of spousal and adult children caregivers of people with dementia. BMC Palliat Care. 2018 Nov 20;17(1):124. doi: 10.1186/s12904-018-0376-3. PMID: 30458746; PMCID: PMC6247750.

Author: Cate
Passionate about dementia care and quality of life throughout the last days of life----sums up Cate McCarty, Dr. Cate, Dementia Coach. With close to forty years of long-term care experience in nursing and recreation, a Master's in Thanatology and a PhD in Aging Studies, Dr. Cate seizes every opportunity to translate research into quality of life for individuals with dementia and all of us who have the honor to "rub elbows" with them.

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