The experiences needs and outcomes for carers of people with dementia

Full Report
• Secondary Stressors. Secondary stressors are not less
important but rather are related to the way in which
caregiving impacts upon other aspects of the family
member’s life, for example creating conflict in other
relationships or difficulties with employment. Also in
the way that caregiving impacts upon self-concept
and self-esteem. Pearlin et al. (1990) terms these role
strains and intra-psychic strains.
• Resources. This involves the intrapersonal and
interpersonal resources that the person may have
to assist them in coping with their caregiving role
and include coping strategies and social support.
Social support includes other family members and
relationships and also formal support services.
• The fifth factor in this model is the outcome of
caregiving, involving impacts upon the health of the
family caregiver, their emotional wellbeing and the
placement of the person living with dementia in
institutional care.
Elvish, et al. (2012) indicated that the model suggests
interplay between objective factors such as the behaviour
of the person with dementia, and subjective factors such
as the family caregiver’s feelings concerning their role
that would predict specific outcomes.
The transactional model of stress and coping views
outcomes as arising from interplay between the person
and the particular situation they are confronted with.
Stress arises when the person appraises the situation and
is either not able to identify coping resources to address
the situation, or their coping resources are ineffective
(Elvish, et al. 2012). They further suggest that the crucial
issue is not the situation itself, but how the person
appraises this event. They suggest that this model is
helpful because it accounts for differences in caregiving
reactions to similar events.
Both of these theoretical models can be considered
to be a useful framework for considering the factors
influencing outcomes in caregiving, and a considerable
body of research has focused upon the factors leading
to those outcomes. Until recently, research has rarely
addressed those factors that may be protective. However
evidence is increasing and suggests that protective factors
such as self-efficacy are important (Gallagher, et al. 2011a;
Gallagher, et al. 2011b; Beinart, et al. 2012).
Thus it is necessary to consider those factors that might
lead to negative outcomes but also to identify those that
may serve to protect against such outcomes occurring.
However, the identification of risk and protective factors
is a complex undertaking. Zarit, et al. (2010) carried out a
study to explore the associations between risk factors and
outcomes, in a sample of 67 caregivers caring for a family
member in the middle stages of dementia. They grouped
15 risk factors into three groups:
• risks related to demands on the caregiver’s time;
• risks related to the spillover of care demands into other
areas of the person’s life, including roles, relationships,
and activities – e.g. loss of relationships, family conflict,
health behaviour issues, dissatisfaction with informal
help; and
• risks associated with low use of supportive services
and barriers to using help – dissatisfaction with formal
help, financial strain.
They used six outcome measures: Role overload, Role
captivity, Depressive symptoms, Anger, Positive affect and
Subjective health. They found that there was little evidence
of correlation among risk factors. In the main, the patterns
of risk were unique to each family caregiver, with different
combinations of risk factors associated with each outcome
measure. Where outcome measures were used, these
showed higher correlations with one another, but were still
variable in the number and type of outcomes that were
elevated. An association between the caregiver’s health
behaviour and stress-related outcomes was identified,
but this could occur either positively or negatively. Family
caregivers may have improved outcomes because they
take care of themselves, or depression may lead them
to neglect their health. The study demonstrates that risk
assessments for caregivers need to be planned carefully
and interventions need to be targeted in terms of the
appropriate risk factors and outcomes.
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