Monthly Archives: September 2018

This is a doctoral dissertation from 2017 on the impact of the
relationship for a spouse caring for a husband or wife with dementia.
Though dementia caregiving is the focus of this dissertation, I think
the document applies to caregiver spouses where the care-recipient
does NOT have dementia.

The document is 280 pages so I didn’t read it all but skipped around.
Despite the fact that the language is scholarly, many of the pages are
worth reading.

I’ve provided two long excerpts below. The second excerpt includes
this sentence: “It is also known that a spouse’s vows, vigilance,
worry and tireless caregiving result in incredible morbidity.” I
think this refers to the caregiver’s morbidity. The dissertation’s
author indicates that “caregivers would be in better states of health
and wellness if clinicians were aware of the [couple’s] ability to
communicate…”

Here are the two excerpts I found the most interesting:

(From page 55 and 56, using the page numbers of the dissertation)

Couplehood. Lobo Prabhu et al. (2005) skillfully depicted the
relationship of husbands and wives… When dementia was introduced,
the fragile balance was thrown into chaos. The authors constructed a
framework to explain why couples stayed together and offered practice
implications to enable spouses to continue caregiving with sound
support. They reported that couples retained togetherness, despite
dementia, when the basis of stable marriage included concepts of:
1. quid pro quo (an equal exchange or substitution),
2. values of commitment (respect, pride, and accomplishment despite sacrifice),
3. holding on to the familiar (vs. letting go and abandonment),
4. rupture vs. repair of marital bond (what is the minimal
gratification the caregiver requires to sustain the relationship? will
a smile or eye recognition suffice?),
5. mastery of separation (decisional capacity and choice migrates from
care-recipient to caregiver),
6. spirituality (altruism and prayer),
7. changes in sexuality (loss of shared togetherness) and
8. emotional support (social connections, family support, and kin-care).

(From page 80 of the dissertation)

Regrettably, the couple’s “together life biography” and pre-dementia
relationship closeness are greatly underestimated in clinical practice
(Davies & Gregory, 2007). Pre-dementia relationship closeness and
current relationship closeness colors the way a spouse caregiver makes
decisions and renders effective and nurturing care, or not. It
triggers advocacy or ambivalence. It is also known that a spouse’s
vows, vigilance, worry and tireless caregiving result in incredible
morbidity. Moreover, empiric literature has shown relationships
characterized by kindness, respect, and warmth, or less criticism,
conflict, and family dysfunction are associated with better caregiver
and care-recipient morbidity and caregiving outcomes. Additionally,
the care-recipient behavior is a significant controlling factor for
the caregiver’s reciprocal emotions, relationship, burden, and
depression. Therefore, caregivers would be in better states of health
and wellness if clinicians were aware of the dyad’s ability to
communicate, the efficacy of their interactions, the strengths, and
weaknesses activated by dementia disease and the vulnerabilities now
present in the dementia dyad’s life together experience.

Here’s a link to the full document, in case you’d like to check out
more of the dissertation:

https://opencommons.uconn.edu/cgi/viewcontent.cgi?referer=&httpsredir=1&article=7648&context=dissertations

Heart and Soul: A Phenomenology of Dementia Spouse Caregivers’
Relationship Closeness
by Elena Schjavland, PhD
University of Connecticut, 2017

Thanks to an online friend who is an FTD caregiver for sharing this
dissertation with me.

Let me know if you find other parts that resonate with you,
Robin