The experiences needs and outcomes for carers of people with dementia

Full Report
onset of dementia. In their systematic review
Svanberg, et al. (2011) indicate that there is
considerable evidence of a significant impact upon
family caregivers when a younger person experiences
dementia, and that this impact may lead to a greater
experience of negative outcomes than for caregivers
of older family members with dementia. However
further research is needed to establish the causal
factors contributing to such outcomes.
• A systematic review of literature (Schoenmakers,
et al. 2010) found that the level of dependence and
deterioration in a person with dementia is related to
caregiver depression, in particular where the person
develops serious cognitive defects or disturbed
behaviour. Results vary by relationship to the person
with dementia and phase of the dementia, with
partners more likely to be negatively affected by
deterioration than other caregivers, and different
phases of the dementia are found more stressful by
some caregivers than others. However they indicate
that further research is required to understand the
relationship between negative feelings and the way in
which the care situation develops over time.
• A few studies have addressed the combined impact
of pre-existing disability and dementia. Family
caregivers of people with visual and hearing
impairments and dementia are suggested to require
additional support, since people with impaired
memory and visual impairment may experience
greater levels of disorientation and distress.
Some experience visual hallucinations which add
to disorientation (Parker, et al. 2010; Lawrence,
et al. 2009).
Assessment of factors influencing outcomes
Assessment is a fundamental aspect of delivering
effective psycho-social interventions for family caregivers
as an aid to targeting interventions appropriately. Zarit,
et al. (2010) suggests that assessments for caregivers
need to be planned carefully and interventions need
to be targeted in terms of the appropriate risk factors
and outcomes. Consistent with other reviews, they
further indicate that as caregivers represent a
heterogeneous group with significant individual
variability in the experience of risk factors, assessment
is a complex process. Many of the psycho-social
interventions developed in research have used a
number of assessment measures; however this
represents a considerable challenge when translating
such processes into practice, where such issues as
time factors may limit the ability to use a range of
measures (Zarit, 2006). Zarit, et al. (2010) therefore
identify that assessment of family caregivers needs
to be multidimensional, and that no one measure
can realistically capture all of the risks and possible
outcomes for any family caregiver. Thus the Family
Caregiver Alliance (2006) identify a range of areas that
should be addressed in a systematic assessment of
family caregivers, as follows:
• Context of care.
• Family caregiver perception of the health and
functional status of the person with dementia.
• Family caregiver values and preferences.
• Family caregiver well-being.
• Consequences of caregiving.
• Skills/abilities/knowledge to provide care.
• Potential resources.
Thus while measures can be used, it is also
important to gain an understanding of the individual
and relational factors, needs and experiences
of the family caregiver in order to inform care
planning and intervention.
Examples of assessment processes which might be
of value include Stirling, et al. (2010). These authors
highlight the limitations of current assessment
processes and suggest that the complexity of family
caregivers’ needs make it difficult to rely on measures
of carer burden and care-recipient dependency for
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