The experiences needs and outcomes for carers of people with dementia

Full Report
isolated (Mand, 2006), they relied heavily on their
children to provide support with caring for their spouse
with dementia (Jutlla, 2011).
Research on male carers tends to focus less on the
positive aspects of care and more on the difficulties
they experience when taking on caring responsibilities
(Ribeiro & Paul, 2008).
However, the migration experiences of Sikh older
men in Wolverhampton contributed to supporting
caring activities later in life (Jutlla, 2011; Jutlla 2015).
Having migrated to the UK prior to sending for their
wives, migrant men acquired domestic skills to live
independently which they were then able to transfer
to their caring situations (Jutlla, 2011). Indications of
resiliency as suggested by their high levels of selfefficacy
and problem solving abilities have too been
reported in migrant carers of a person with dementia
in the United States (Jason, 2010; Clay, et al. 2010).
In addition to gender and generation identities
(Mand, 2006), social capital as an available resource
is also dependent upon their class identity both prior
and post migration with those from middle class
backgrounds having the advantages of being educated
and having English language skills (Jutlla, 2011). The
majority of older migrants in the UK will have migrated
from working class backgrounds causing additional
language barriers due their non English speaking ability
and common literacy problems (Jutlla, 2013). While
education levels can be an important factor for the
ways in which services are negotiated by migrant carers
(Karim, et al. 2011), there are still implications for British
educated, or British born ethnic minority people caring
for a family member with dementia.
Intergenerational Relationships
Although cultural norms associated with gendered
roles and positions in the family are a universal concept
relevant to all communities, research with Sikh carers
of a family member with dementia made evident
the expectations to adhere to such norms by their
community, especially for intergenerational carers
(Jutlla, 2011). A study by Kane and Houston-Vega (2004)
found intergenerational conflict in Chinese Americans
whose parents expect to be cared for in their later years
by their eldest son and his wife or another child. Similar
to the findings of this study, Sikh intergenerational carers
reported conflict between their desires to meet individual
needs versus their family’s needs as a result of cultural
and community norms that children should care for their
elders (Jutlla, 2011; Jutlla, 2015). Not only did this lead to
feelings of ambivalence towards such community norms,
but also feelings of isolation and depression – particularly
for the women (Jutlla, 2011; Jutlla 2015). Other research
on informal care in Asian families has too highlighted the
potential for Asian women to feel trapped and powerless
due to norms about gendered roles in their communities
(Mand, 2006).
Caregiving for younger people with dementia
Only a small amount of qualitative and quantitative
research explores the experience of dementia for younger
families, and much of this is cross sectional, therefore it is
difficult to identify how dementia is experienced over time
(van Vliet, et al. 2010). Research exploring the impact of
dementia on younger couples and families highlights that
caregiving in this context involve considerable challenges
associated with the life stage at which the illness occurs.
This includes managing responsibilities such as mortgage,
work and other practical considerations as well as familial
responsibilities including dependent children (Bakker, et
al. 2010; Lockeridge & Simpson, 2012; van Vliet, et al.
2010). Studies suggest that caregivers of younger people
with dementia experience feelings of frustration, grief
or guilt, loneliness or social isolation and poor emotional
well-being, with female caregivers appearing to be at
greatest risk of negative psychological impact and spouse
caregivers experiencing greater levels of loneliness
(van Vliet, et al. 2010). Furthermore, this systematic
review highlighted that difficulties were experienced in
relation to the intimate aspects of the relationship and
in forming new relationships. Roach, et al. (2014) used
narrative analysis to identify 5 recurring storylines used by
families experiencing young onset dementia at different
points in their journey: agreeing; colluding; conflicting;
fabricating; and protecting. Families that primarily
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