Spouses of persons with dementia: Attachment, loss and coping
The purpose is to study how spouses of persons with dementia cope with losses and caregiving tasks during the
dementia process and how their coping is related to the individual's and the couple's history of attachment. The
sample consists of 28 couples where one of the spouses has dementia. The caregiving spouses, aged 60-87, are
interviewed at an early stage of dementia and are followed up every 6-9 months over a periode of three years.
The life situation is continually changing, and coping methods are repeatedly challenged. Coping with losses
and readjustments are dependent upon their need of the partner to feel safe. Different patterns of attachment behaviour
Compulsive caregiving spouses attend to their spouse beyond their needs. Spouses in anxious
often panic and try to fight back the symptoms of dementia. A pattern of compulsive self-sufficiency
manifests itself as arguing or withdrawal from the partner.
Secure attachment makes it easier to accept the
changes, keep in contact and care. To understand the strains and coping of the spouses, we need to understand
how dementia triggers patterns of attachment behaviour. They need more than information on dementia and
training in handling various symptoms. They need empathy and individually adapted interventions.
Emerging dementia with gradual mental deterioriation
and increasing dependency ending in death, is frightening
to those involved, both to the person himself and
to the family. The new situation disturbes an established
balance in the relationship and interferes with
communication. Meaningful mutual contact and shared
meaning is gradually lost.
In the book ‘Living in the Labyrinth’ Diana Friel
McGowin, who had received a diagnosis of dementia,
’My every molecule seems to scream out that I
do, indeed, exist, and that existence must be valued by
someone! Without someone to walk this labyrinth by
my side, without the touch of a fellow traveller who
understands my need of self-worth, how can I endure
the rest of this uncharted journey?’
(Cited after Kitwood
1997, p. 15). This person is in desperate need of
a secure attachment figure to recognize, help and guide
her. In this paper we are focusing on the situation of
the fellow traveller, the chart reader; the spouse.
The burdens of family caregiving for persons with
dementia are documented in a great number of studies
(Morris & Morris 1993). The tasks of a fellow traveller
and navigator in the labyrinth of dementia are, not least
due to strong personal involvement, also hard to
endure. Research does not reveal any clear and simple
conclusions on how coping stategies, social support or
professional interventions may ease the burden (Zarit
et al. 1986). By including attachment theory in the
framework of analysis, we hope to come closer to
understanding changing relationships and how burdens
may be eased.
From an outside position it is difficult to ascertain
what the most heavy burdens are. A distinction has to
be made between objective and subjective burden
(Duijnstee 1992, Morris & Morris 1993). The objective
burden, often measured by severity of dementia symptoms,
is not strongly associated with subjective burden
as experienced by the caregiver (George & Gwyther
1986, Zarit et al. 1986). ‘Over time the meaning given
to a stressor seems more important than its occurence’
(Lévesque et al. 1998, p. 253). When the goal of the efforts
not only is to give good care, but also to maintain
a relationship, burden may have to be measured by
different standards. Objective burden, or elements of
objective burden, may even be evaluated in positive
terms by the caregiver (Farran et al. 1991, Grafström
1994, Motenko 1989). Caregivers may need elements
of ‘the burden’ in order to maintain attachment bonds
or to fulfill their obligations. Interventions to take such
burdens away, without considering the underlying
needs or goals, may interfere with the best interests of
the caregiver – and of the person with dementia.
This article is based upon a study with the purpose
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