Spouses of persons with dementia: Attachment, loss and coping

Abstract

ABSTRACT

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

are seen.

Compulsive caregiving spouses attend to their spouse beyond their needs. Spouses in anxious

attachment

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.

I

NTRODUCTION

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,

writes:

’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

of finding