People of south Asian or Black Caribbean
origin are far more likely to hold a ‘traditional’ view of
caregiving than White British people, new research shows.
The study,
published in the September issue of the British Journal of
Psychiatry, found that south Asian and Black Caribbean carers
of people with dementia are more likely to perceive their caring
role as natural, expected and virtuous.
In contrast, White British people are more
likely to hold a ‘non-traditional’ caregiving ideology, deriving
little or no reward from such a relationship and believing their
own lives are put ‘on hold’ while they perform caring duties.
In the UK, around two-thirds of older people
with dementia are supported in the community, and family members
are the most important source of dementia care. This is
particularly true among ethnic minority populations, who are less
likely to access specialist healthcare of social care services.
Researchers at the Institute of Psychiatry,
King’s College London carried out in-depth qualitative interviews
with 32 carers of people with dementia: 10 were Black Caribbean (9
women, 1 man), 10 south Asian (5 women, 5 men) and 12 White British
(11 women, 1 man). The participants were recruited from four
socially and ethnically diverse south London boroughs – Lambeth,
Southwark, Lewisham and Croydon.
Carers fell into one of two groups
(traditional and non-traditional) according to whether they held
three core interrelated beliefs: that caregiving is natural,
expected and virtuous. The majority of the south Asian, half of the
Black Caribbean and only a minority of White British participants
were found to possess a traditional ideology.
Most south Asian and Black Caribbean carers
with traditional ideologies possessed strong religious values. For
them, providing care was consistent with being a ‘good’ Hindu or
Christian and was therefore the normal thing to do.
Others felt a natural inclination towards
caregiving. For example, a high proportion of Black Caribbean
carers had experience in the nursing profession, and felt this
equipped them to deal with the caregiving role.
Many traditional caregivers viewed their role
as a natural part of their life course, either as the spouse or the
child of someone with dementia. One south Asian son said: “You
know, as Indians, we always look after our parents…my father looked
after me when I was young and he has done lots and lots of things
for me so it’s my turn to look after him.”
Sons and daughters of south Asian and Black
Caribbean origin with traditional ideologies viewed caring less as
a necessity and more as an opportunity to reciprocate parental
support. One daughter, born in the Caribbean, reflected on how her
attitude towards caregiving differed from that of her British-born
siblings: “It’s something I want to do and I’m glad I can do it.
It’s almost a privilege to do, but then, you know, I…as I said I
grow up in Jamaica and it’s probably a cultural thing. Whereas my
younger siblings don’t have quite the same dedication, they’ll do
it because it’s Dad but it’s not their duty.”
Having a traditional caregiving ideology was
found to help carers derive rewards from the relationship and feel
that their lives, although changed, were ongoing. This contrasts
sharply with those with non-traditional ideologies, for whom
caregiving often signified the end of their relationship and, to a
large extent, their lives.
For example, one White British woman with a
non-traditional ideology caring for her mother said: “In a way
she’s not my Mum anymore, that’s the hard bit, she’s just
sometimes…she can be a difficult old lady that you have to keep
your eye on.”
The researchers found that caregiving had a
negative impact on carer health across all participants – both
traditional and non-traditional. Many felt that they were
constantly battling exhaustion and were sleep-deprived.
Overall, caregivers with a traditional
ideology were more likely to be satisfied with the support they
received from professional health and social care services.
Conversely, some carers with non-traditional ideologies were eager
to relinquish their caregiving responsibility, were more demanding
of services and more likely to feel their needs were not being
met.
The study’s authors make recommendations of
ways in which carers with both traditional and non-traditional
ideologies can be better supported.
For those with traditional ideologies,
professional care staff should reassure carers that it is both
natural and necessary to take time for themselves. Significantly,
some south Asian carers saw asking for professional help as a
failure to fulfil their responsibilities. Therefore, services might
be considered more acceptable if they communicated their commitment
to supporting – rather than substituting – family members in the
caregiving role.
Carers with non-traditional ideologies may
benefit from a change in governmental policy and the benefits
system to directly support and promote the role of family carers.
Specific grants or targeted benefits would help legitimise the
caregiving role as well as directly help those who care.