The experiences needs and outcomes for carers of people with dementia

Full Report
When considering the involvement of children and
young people in caregiving, it is necessary to recognise
that research indicates that they are unlikely to have
the cognitive functions and resources required to cope
with caregiving stressors and manage their own needs
(Hamil, 2012). Evidence suggests that children and
young people are actively involved in supporting their
grandparents and parents when they have a diagnosis
of dementia, although they may not necessarily see
themselves as caregivers. Involvement in caregiving
occurs for a number of reasons including; parental
involvement in caregiving; particularly where parents
were providing a greater number of hours of support;
where the previous relationship was positive; because
of the love they have for the person with dementia
and through choice (Hamil, 2012; Denny, et al. 2012;
Svanberg, et al. 2010; Celdrán, et al. 2011). The nature
of the support offered varies but is suggested to
include; physical support such as with feeding and
mobility; help with household chores including
meal preparation; communication with health care
professionals, and personal assistance including
medication administration (Nichols, 2012; Hamil, 2012;
Svanberg, et al. 2010; Denny, et al. 2012; Celdrán, et
al. 2011). However such involvement in caregiving is
found to have considerable costs including high levels of
stress and burden (Svanberg, et al. 2010). Furthermore,
Denny et al. (2012) highlight research from other
conditions demonstrating the difficulties for children
in being exposed to a parents’ deteriorating condition
and suggest that it is important to recognise the
considerable costs for children in being involved.
It is therefore suggested that the needs of children and
young people where a family member has dementia
should be recognised and support should be offered
that is specific to their needs. This includes supporting
family members to openly communicate with children;
providing tailored information and education concerning
dementia; developing psychological interventions
including peer support; assisting the development of
a different relationship with the parent or grandparent
with dementia and providing family interventions
(Svanberg et al. 2010,; Denny, et al. 2012; Gelman &
Greer, 2012).
Limitations
It should be acknowledged that there are some
limitations in the research reviewed above.
• Firstly, the research evidence largely reflects
relationships within traditional family structures,
and predominantly spouses. However family
relationships and caring is affected by a range of
factors including ethnicity, sexual orientation,
gender, disability and divorce.
• Secondly, much of the research has focused upon
people with a diagnosis of Alzheimer’s disease or
dementia without diagnosis of subtype.
Thus this next section considers available research
evidence for the impact and experience for different
groups within society. The impact of less common
forms of dementia will be considered later in the review.
‘Evidence suggests that
children and young people
are actively involved
in supporting their
grandparents and parents
when they have a diagnosis
of dementia, although they
may not necessarily see
themselves as caregivers.’
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