Carers of people with dementia

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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. 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.

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. ...http://www.medicalnewstoday.com.

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