Testing stress training for black and minority ethnic carers of people with dementia

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Through its evaluation of the effectiveness of the US Savvy Caregiver Program (SCP) specifically for ethnically diverse caregivers, this paper indirectly addresses some key issues for carer research. These are the ongoing drive to develop interventions to support the growing numbers of carers of people living with Alzheimer’s disease and minority ethnic caregivers’ needs.

SCP is a ‘multidimensional stress mediation’ caregiver training programme that aims to reduce caregiver distress for those caring for a relative or friend with Alzheimer’s disease or another dementia. It is designed to address the various factors that cause increasing stress over time.

The program is delivered in 2-hr sessions over a 6-week period and includes building internal caregiver skills, knowledge and self-confidence, as well as building external resources such as engaging the entire family in the care, and using community resources for respite and support.

To date, assessment of its effectiveness had been limited primarily to White Caucasian caregivers and this US study evaluated the impact of SCP on Alzheimer caregivers from ethnically diverse communities.

The research looked at how well a 'multidimensional stress mediation' training worked for carers of people with dementia from black and minority ethnic backgrounds

The research looked at how well ‘multidimensional stress mediation’ training worked for carers of people with dementia from black and minority ethnic backgrounds

Method

The study focused on English speaking caregivers of Hispanic, Black African American and Asian/Pacific Islander descent. One hundred and forty nine Hispanic, 91 Black African American, and 79 Asian/Pacific Islander caregivers took part.

Seventy-eight percent of the Hispanic caregivers, 56% of the Black/African American caregivers, and 74% of the Asian caregivers completed 5-6 sessions.

Program participants were asked to complete an assessment instrument prior to enrollment, at 6 months post enrollment, and at 12 months post enrollment. This instrument measured:

  • competence (the extent to which caregivers perceives herself/himself to be in control of the situation)
  • levels of depression
  • reaction to care recipients’ memory and behavior problems
  • management of meaning (management of the meaning of the situation utilizing strategies of reduction of expectations, positive comparisons, and searching for a larger sense of the illness)
  • management the situation (how well caregivers manage their caregiving situation).

The impact of the program on these measures was analyzed using a linear mixed-model analysis for each measure for the three ethnic groups separately. The analyses for each of the groups were then compared.

Findings

The results demonstrated statistically significant improvements in the Alzheimer caregivers’ competence, depression levels, reaction to care recipient’s problems, management of meaning, and management of situation 6 months and 12 months post-enrollment. There were no statistically significant changes on the measure of mastery.

The study showed that the SCP led to the carers of people with Alzheimer’s disease in the three ethnic groups selected having:

  • better competence,
  • reduced depression,
  • greater tolerance for care recipients’ memory problems,
  • better management of their situation, and
  • improved perception of their situation.

In most cases, these improvements were evident 6 months after enrollment, and were maintained at 12 months after enrollment.

Following training participants reported feeling greater tolerance for care recipients’ memory problems

Following training participants reported feeling greater tolerance for care recipients’ memory problems

Conclusion

The authors argue concluded the study demonstrates that in the sample studied the SCP was as effective in helping ethnically diverse English speaking carers of people living with Alzheimer’s disease as it has been shown to be with White Caucasian caregivers.

Strengths and limitations

Whilst there is a detailed outline of measurement items on the assessment instrument and the scoring system used, there is nothing on the development of the assessment instrument. The study also suffered from a lack of qualitative data which could be usefully supplement the findings.

Importantly, the study provides additional validation of the efficacy of a multidimensional training programme such as SCP for carers of people with dementia. However, in relation to what the study adds to the minority ethnic caregivers’ needs, there are a number of reasons why its sampling potentially undermine the generalisablity of the findings, particularly for an international audience.

One of these reasons is that the sample only includes ethnic caregivers who self-identify, who are accessing services and who speak English. Many carers do not own the term (Lloyd, 2006), and self-identification among minority ethnic individuals of their status as carers is lower than for other groups (Cass, 2005; IRISS, 2010). Language has also been identified as one the greatest barriers to minority ethnic caregivers accessing services (Greenwood et al., 2015).

Thus this study findings are applicable to a limited number of minority ethnic caregivers. Furthermore, through no fault its own, by virtue of the fact that it was conducted with American-based minority ethnic groups and there is an established diversity across groups of minority ethnic caregivers (Chow et al, 2010), its international applicability is potentially reduced.

Summary

As with much carer research, the value of this study to social care practice more broadly lies not merely in its execution but in its incorporation into the international body of knowledge about carer interventions.

Effectively aligning the findings of this study with existing and future studies will help strengthen the evidence base required to inform social care practice with carers from black and minority ethnic communities. This underscores the need for greater co-ordination within, and synthesis of, carer research to ensure is truly benefits those it is intended to benefit.

The findings have the potential to strengthen the evidence base informing social care practice with carers from black and minority ethnic communities

The findings have the potential to strengthen the evidence base informing social care practice with carers from black and minority ethnic communities

Link

Kally, Z., Cote, S.D., Gonzalez, J., M Villarruel, M., Cherry, D.L., Howland, S., Higgins, M., Connolly, L & Hepburn , K.(2014) ‘The Savvy Caregiver Program: Impact of an Evidence-Based Intervention on the Well-Being of Ethnically Diverse Caregivers’, Journal of Gerontological Social Work, 57 (6-7) pp.681-693, DOI:10.1080/01634372.2013.850584 [Abstract]

References

Cass, E. (2005) Adults’ services: SCIE Guide 9: Implementing the Carers (Equal Opportunities) Act 2004. London: SCIE. [Full text]

Chow C.C.J., Auh E.Y., Scharlach A.E., Lehning A.J. & Goldstein C. (2010) Types and sources of support received by family caregivers of older adults from diverse racial and ethnic groups. Journal of Ethnic & Cultural Diversity in Social Work 19 (3) pp.175-194. [Abstract]

Greenwood, N., Habibi, R., Smith, R and Manthorpe, J. (2015) ‘Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature.’ Health and Social Care in the Community 23 (1) pp.64–78. [Full text]

The Institute for Research and Innovation in Social Services (IRISS) (2010) Insights 7: Improving support for black and minority ethnic (BME) carers Glasgow: IRISS [Full text]

Lloyd, L. (2006) ‘Call us carers: Limitations and risks in campaigning for recognition and exclusivity’, Critical Social Policy 26 (4) pp.945- 54. [Abstract]

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Mary Larkin

Dr Mary Larkin is a Senior Lecturer in the Faculty of Health and Social Care at the Open University. Her main research interests are carers, adult social care, the third sector personalisation, and carer and service user empowerment. She has published widely and led on several national and international projects, including an ESRC funded carers seminar series and a European Social Fund project about older carers. In addition to having been a carer herself and working for a local carers organisation, she has worked closely with a wide range of national and international voluntary organisations. The latter includes the Finnish Caregivers Association for whom she was a Consultant as their own national strategy for carers progressed through the Finnish policy making process. Mary is also a regular peer reviewer for leading journals, funding bodies and publishers. She holds an Honorary Research Fellowship with the Third Sector Research Centre, is a member of the Social Care Institute for Excellence Co-production Network and co-ordinates the Carers Research Collaborative Network (JISCmail).

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