From detection to preparing for the end-of-life: A qualitative exploration of the South Asian family carers' experiences of the journey with dementia.
South Asian
advanced care plan
dementia
end-of-life care
family carer
qualitative research
Journal
Health & social care in the community
ISSN: 1365-2524
Titre abrégé: Health Soc Care Community
Pays: England
ID NLM: 9306359
Informations de publication
Date de publication:
11 2022
11 2022
Historique:
revised:
01
06
2022
received:
22
11
2021
accepted:
09
07
2022
pubmed:
31
7
2022
medline:
20
12
2022
entrez:
30
7
2022
Statut:
ppublish
Résumé
People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end-of-life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi-structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end-of-life preparation. Sixteen caregivers participated in face-to-face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end-of-life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end-of-life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day-to-day care. Importantly the findings suggest that planning and preparing to provide end-of-life for people with dementia should recognise and respect family and cultural contexts and religious beliefs.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e5135-e5144Informations de copyright
© 2022 John Wiley & Sons Ltd.
Références
Adamson, J. (2001). Awareness and understanding of dementia in African/Caribbean and South Asian families. Health & Social Care in the Community, 9, 391-396.
Adamson, J., & Donovan, J. (2005). 'Normal disruption': South Asian and African/Caribbean relatives caring for an older family member in the UK. Social Science & Medicine, 60, 37-48.
All Party Parliamentary Group on Dementia. (2013). Dementia does not discriminate. The experiences of black, Asian and minority ethnic communities. Alzheimer Society.
Alzheimer's Society. (2021a). Alzheimer's Society's view on end of life care. Retrieved from https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/end-life-care
Alzheimer's Society. (2021b). End of life care. Retrieved from https://www.alzheimers.org.uk/get-support/help-dementia-care/end-life-care
Biondo, P. D., Kalia, R., Khan, R. A., Asghar, N., Banerjee, C., Boulton, D., Marlett, N., Shklarov, S., & Simon, J. E. (2017). Understanding advance care planning within the south Asian community. Health Expectations, 20(5), 911-919.
Blakemore, A., Kenning, C., Mirza, N., Daker-White, G., Panagioti, M., & Waheed, W. (2018). Dementia in UKsouth Asians: A scoping review of the literature. BMJ Open, 8(4), e020290. https://doi.org/10.1136/bmjopen-2017-020290
Blakemore, K., & Boneham, M. A. (1994). Age, race and ethnicity: A comparative approach. Open University Press.
Bogdan, R. C., & Biklen, S. K. (1998). Qualitative research in education: An introduction to theory and methods. ERIC.
Bowes, A., & Wilkinson, H. (2003). 'We didn't know it would get that bad': South Asianexperiences of dementia and the service response. Health & Social Care in the Community, 11, 387-396.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.
Cain, C. L., Surbone, A., Elk, R., & Kagawa-Singer, M. (2018). Culture and palliative care: Preferences, communication, meaning, and mutual decision making. Journal of Pain and Symptom Management, 55(5), 1408-1419.
Carers, U. K. (2011). Half a million voices: Improving support for BAME carers. Carers UK.
Del-Pino-Casado, R., Priego-Cubero, E., López-Martínez, C., & Orgeta, V. (2021). Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis. PLoS One, 16(3), e0247143.
Department of Health. (2008). End of life care strategy: Promoting high quality care for all adults at the end of life.
Finlay, L. (2011). Phenomenology for therapists: Researching the lived world. John Wiley & Sons.
Fontaine, J. L., Ahuja, J., Bradbury, N. M., Phillips, S., & Oyebode, J. R. (2007). Understanding dementia amongst people in minority ethnic and cultural groups. Journal of Advanced Nursing, 60, 605-614.
Giebel, C. M., Worden, A., Challis, D., Jolley, D., Bhui, K. S., Lambat, A., Kampanellou, E., & Purandare, N. (2019). Age, memory loss and perceptions of dementia in south Asian ethnic minorities. Aging & Mental Health, 23(2), 173-182.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Aldine de Gruyter.
Green, J., & Thorogood, N. (2013). Qualitative methods for health research. Sage.
Greenwood, N., Habibi, R., Smith, R., & 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 & Social Care in the Community, 23(1), 64-78. https://doi.org/10.1111/hsc.12116
Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. Sage.
Hossain, M. (2020). The costs of caregiving: Exploring the perceived burden of dementia among Bangladeshi caregivers in Britain. The American Journal of Family Therapy., 49, 91-108. https://doi.org/10.1080/01926187.2020.1777911
Hossain, M., Crossland, J., Stores, R., Dewey, A., & Hakak, Y. (2018). Awareness and understanding of dementia in south Asians: A synthesis of qualitative evidence. Dementia, 19(5), 1441-1473. https://doi.org/10.1177/1471301218800641
Hossain, M., Stores, R., Hakak, D., Crossland, J., & Dewey, A. (2019). Dementia knowledge and attitudes of the general public among the Bangladeshi community in England: A focus group study. Dementia and Geriatric Cognitive Disorders, 48, 290-296.
Hossain, M. Z., & Khan, H. T. A. (2019). Dementia in the Bangladeshi diaspora in England: A qualitative study of the myths and stigmas about dementia. Journal of Evaluation in Clinical Practice, 25, 769-778.
Hossain, M. Z., & Khan, H. T. A. (2020). Barriers to access and ways to improve dementia services for a minority ethnic group in England. Journal of Evaluation in Clinical Practice, 26, 1629-1637. https://doi.org/10.1111/jep.13361
Hossain, M. Z., & Mughal, F. (2020). Dementia and revivalist Islam: New perspectives and approaches to understanding dementia and tackling stigma. Journal of Evaluation in Clinical Practice, 27, 213-217. https://doi.org/10.1111/jep.13412
Hossain, M. Z., Stores, R., Hakak, Y., & Dewey, A. (2019). Traditional gender roles and effects of dementia caregiving within a south Asian ethnic Group in England. Dementia and Geriatric Cognitive Disorders, 48(5-6), 330-336. https://doi.org/10.1159/000506363
Kadivar, M., Mardani-Hamooleh, M., & Kouhnavard, M. (2018). Concept analysis of human dignity in patient care: Rodgers' evolutionary approach. Journal of Medical Ethics and History of Medicine, 11, 4.
Kanuha, V. K. (2000). "being" native versus "going native": Conducting social work research as an insider. Social Work, 45(5), 439-447.
Lawrence, V., Murray, J., Samsi, K., & Banerjee, S. (2008). Attitudes and support needs of black Caribbean, south Asian and White British carers of people with dementia in the UK. The British Journal of Psychiatry: the Journal of Mental Science, 193, 240-246.
Mackenzie, J. (2006). Stigma and dementia: East European and south Asian family carers negotiating stigma in the UK. Dementia, 5, 233-247.
Milne, A., & Chryssanathopoulou, C. (2005). Dementia care-giving in Black and Asian populations: Reviewing and refining the research agenda. Journal of Community & Applied Social Psychology, 15(5), 319-337. https://doi.org/10.1002/casp.830
Mukadam, N., Cooper, C., Basit, B., & Livingston, G. (2011). Why do ethnic elders present later to UKdementia services? A qualitative study. International Psychogeriatrics, 23, 1070-1077.
NICE. (2018). Dementia: Assessment, management and support for people living with dementia and their carers The National Institute for health and care excellence (NICE) guideline [NG97].
Office for National Statistics. (2020). Dementia and Alzheimer's disease deaths including comorbidities, England and Wales: 2019 registrations.https://www.ons.gov.uk
Orlovic, M., Callender, T., Riley, J., Darzi, A., & Droney, J. (2020). Impact of advance care planning on dying in hospital: Evidence from urgent care records. PLoS One, 15(12), e0242914. https://doi.org/10.1371/journal.pone.0242914
Parveen, S., & Oyebode, J. (2018). Dementia and minority ethnic carers. Better Health Briefing, 46, 12.
Pickett, J., Bird, C., Ballard, C., Banerjee, S., Brayne, C., Cowan, K., Clare, L., Comas-Herrera, A., Corner, L., Daley, S., Knapp, M., Lafortune, L., Livingston, G., Manthorpe, J., Marchant, N., Moriarty, J., Robinson, L., van Lynden, C., Windle, G., … Walton, C. (2018). A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025. International Journal of Geriatric Psychiatry, 33(7), 900-906.
Prince, M., Wimo, A., Guerchet, M., Ali, G. C., Wu, Y. T., & Prina, M. (2018, 2015). In Alzheimer's Disease International (Ed.), World Alzheimer report 2015: The global impact of dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer's Disease International.
Quay, T. A. W., Frimer, L., Janssen, P. A., & Lamers, Y. (2017). Barriers and facilitators to recruitment of south Asians to health research: A scoping review. BMJ Open, 7(5), e014889. https://doi.org/10.1136/bmjopen-2016-014889
Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893-1907. https://doi.org/10.1007/s11135-017-0574-8
Singh, V., Dhamoon, M. S., & Alladi, S. (2018). Stroke risk and vascular dementia in south Asians. Current Atherosclerosis Reports, 20(9), 1-7.
Stevenson, M., & Taylor, B. J. (2019). Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study. Dementia, 18(2), 701-712.
The National Institute on Aging (NIA). (2021). End-of-life care for people with dementia. Retrieved from https://www.nia.nih.gov/health/end-life-care-people-dementia
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349-357.
Truswell, D. (2014). Black, Asian and minority Ethnic communities and dementia-Where are we now. J Alzheimers Dis Parkinsonism, 4(152), 2161-2460.
Uppal, G., & Bonas, S. (2014). Constructions of dementia in the south Asian community: A systematic literature review. Mental Health, Religion & Culture, 17(2), 143-160. https://doi.org/10.1080/13674676.2013.764515
Uppal, G. K., Bonas, S., & Philpott, H. (2013). Understanding and awareness of dementia in the Sikh community. Mental Health, Religion & Culture, 17, 400-414.