The experiences needs and outcomes for carers of people with dementia

Executive Summary
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understanding and stigma, absence of the concept
within specific cultures, attribution of symptoms to
normal ageing, or other health difficulties;
Denial; and
Lack of co-ordination within and between
service systems.
• Evidence from consultations with people living with
dementia and their family members have emphasised
the considerable variability in what people believe they
need, but core themes about services can be drawn
from such research. These themes include:
° People living with dementia and their families want
support to enable the person living with dementia to
remain at home as far as this is possible;
° People value early assessment and diagnosis and
a significant proportion of people wish to know their
diagnosis;
° Following diagnosis, people identify the need for
individualised and tailored information and education
about dementia, available in a variety of forms and
accessible throughout the journey with dementia;
° An ongoing point of contact through the journey
with dementia;
° Access to appropriate treatment and support when
this is needed; and
° Interventions that are responsive to their particular
circumstances and needs.
What implications does caregiving have
for the person/ family member involved
in caregiving and the person with
dementia?
There are a number of known outcomes related to family
caregiving, these outcomes can be summarised in six
main areas:
1 Deterioration in the physical health of the family
caregiver, including heart disease and reduced immune
functioning.
2 Deterioration in the psychological well-being of the
family caregiver including depression and lowered
quality of life.
3 Psychosocial consequences, including isolation and
changes in relationship quality and conflict within
the family.
4 Admission to institutional care for the person
with dementia.
5 Abuse.
6 The financial impact of caregiving, including having
to leave employment as a consequence of caregiving.
Factors that protect or increase the
risk of poor outcomes in caregiving
Research concerning the outcomes of family caregiving, the
factors contributing to these outcomes and the development
of interventions designed to prevent such outcomes has
largely been influenced by theoretical models concerning the
experience and impact of stress, in particular the Stress Process
Model (Pearlin, et al. 1990) and the transactional model of
stress and coping (Morrissey, et al. 1990). Descriptions of these
models can be found at: http://gerontologist.oxfordjournals.
org/content/30/5/583.full.pdf and www.youtube.com/
watch?v=a8FEMHCRowM respectively.
A range of factors are considered to be either protective
or contribute to the development of poor outcomes in
caregiving. However, the identification of risk factors is
complex. One major research study highlighted that:
• In the main, the patterns of risk are unique to each
family caregiver;
• 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;
• 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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