The experiences needs and outcomes for carers of people with dementia

Executive Summary
Who is at greater risk of
poor outcomes?
While it is evident that there is considerable
individual variability in the experience of caregiving,
there is evidence that certain types of family
caregivers are at greater risk of poor outcomes.
These are:
• Female caregivers, who are more often depressed;
• Spouse caregivers are more often depressed than
other caregivers;
• Possibly people from migrant or minority
communities but further UK research is required;
• Family caregivers of younger people with dementia;
• Where the severity of the dementia and the
dependence upon the family caregiver is high,
but further research is needed to understand this
relationship; and
• Where pre-existing disabilities are present, such as a
learning disability, but further research is required.
Assessment of factors influencing outcomes
Assessment is a fundamental aspect of delivering
effective interventions for family caregivers, in order
that the right interventions are offered. Due to the
wide range of risk factors identified above, assessment
needs to be multidimensional and include developing
an understanding of:
• 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; and
• Potential resources.
Interventions to support family
caregiving and reduce the risk of
poor outcomes
A large number of psychosocial interventions have been
designed to address the factors that influence negative
outcomes in caregiving. Given the significant number
of interventions available in the literature, a number
of systematic reviews, meta-analyses and reviews have
been completed in recent years, and have identified the
interventions and the characteristics of those interventions
that have demonstrated the most success. When viewed
together, the results of this review indicate that successful
interventions:
• Recognise that family members have a
heterogeneous profile of factors
• Are multi-component and tailored to the needs of
the family caregiver and include;
° the involvement of the family caregiver in deciding
what forms of intervention are required;
° the involvement of the person with dementia in
order to address their wellbeing needs;
° providing opportunities to address the relational
context in which caregiving takes place;
° a combination of individual, family and group
interventions depending upon the needs and
wishes of the family caregiver and the person with
dementia; and
° Actively involve the family caregiver in the
development of acceptance based coping strategies.
• Are provided by skilled and experienced practitioners.
• Are structured, providing at least six sessions and are
followed by on-going support, all of which can be
provided flexibly to respond to the needs of the family
including the use of telephone, video-conferencing
14