The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

Gillian CARTER, Dorry MCLAUGHLIN, W George Kernohan, Peter HUDSON, Mike CLARKE, Katherine FROGGATT, Peter PASSMORE, Kevin BRAZIL

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.Design: Descriptive qualitative study Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke’s thematic analysis.Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer’s holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximise their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia our findings have international relevance for similar nursing homes across the world.
LanguageEnglish
Pages0-0
JournalJournal of Advanced Nursing
Volume74
Issue number0
Early online date20 Apr 2018
DOIs
Publication statusE-pub ahead of print - 20 Apr 2018

Fingerprint

Caregivers
Dementia
Decision Making
Nursing Staff
Nursing Homes
Family Nursing
Nursing Services
Terminal Care
Nursing Education
Interviews

Keywords

  • carers
  • decision-making
  • dementia
  • end of life care
  • nursing
  • nursing home care
  • nurse education

Cite this

CARTER, Gillian ; MCLAUGHLIN, Dorry ; Kernohan, W George ; HUDSON, Peter ; CLARKE, Mike ; FROGGATT, Katherine ; PASSMORE, Peter ; BRAZIL, Kevin. / The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study. In: Journal of Advanced Nursing. 2018 ; Vol. 74, No. 0. pp. 0-0.
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title = "The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study",
abstract = "Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.Design: Descriptive qualitative study Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke’s thematic analysis.Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer’s holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximise their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia our findings have international relevance for similar nursing homes across the world.",
keywords = "carers, decision-making, dementia, end of life care, nursing, nursing home care, nurse education",
author = "Gillian CARTER and Dorry MCLAUGHLIN and Kernohan, {W George} and Peter HUDSON and Mike CLARKE and Katherine FROGGATT and Peter PASSMORE and Kevin BRAZIL",
note = "Reference text: Alzheimer's Disease International. (2016). World Alzheimer Report 2016: Improving healthcare for people living with dementia coverage, Quality and costs now and In the future. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf Anesbensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch, C. J. (1995). Profiles in Caregiving: The Unexpected Carer. London, UK: Academic Press Ltd. Ashton, S. E., Roe, B., Jack, B., & McClelland, B. (2016). End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study. Dementia (London), 15(5), 958-975. doi:10.1177/1471301214548521 Barrera, M. (1986). Distinctions between social support concepts, measures, and models. American Journal of Community Psychology, 14, 413 - 445. Black, B. S., Fogarty, L. A., Phillips, H., Finucane, T., Loreck, D. J., Baker, A., . . . Rabins, P. V. (2009). Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care. Journal of Aging and Health, 21(4), 627-650. doi:10.1177/0898264309333316 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77 -101. Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., . . . Kernohan, W. G. (2017). Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine, 269216317722413. doi:10.1177/0269216317722413 Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217-228. Burke, P. J., & Stets, J. E. (2009). Identity Theory. New York, NY: Oxford University Press, Inc. Butcher, H. K., Holkup, P. A., Park, M., & Maas, M. (2001). Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Research in Nursing and Health, 24(6), 470-480. Caswell, G., Pollock, K., Harwood, R., & Porock, D. (2015). Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliative Care, 14(1), 35. doi:10.1186/s12904-015-0032-0 Cohen, S., & McKay, G. (1984). Social Support, Stress and the Buffering Hypothesis: A Theoretical Analysis. In A. Baum, S. E. Taylor, & J. E. e. Singer (Eds.), Handbook of Psychology and Health. NJ,Hillsdale: Erlbaum. Coombs, M. A. (2010). The mourning before: can anticipatory grief theory inform family care in adult intensive care? International Journal of Palliative Nursing, 16(12), 580-584. doi:10.12968/ijpn.2010.16.12.580 Davies, N., Maio, L., Rait, G., & Iliffe, S. (2014). Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine, 28(7), 919-930. doi:10.1177/0269216314526766 Department for Constitutional Affairs. (2007). Mental Capacity Act 2005 Code of Practice. London: TSO (The Stationery Office). Department of Health (2010). Recognised,valued and supported: Next steps for the carers strategy. London: HM Government. Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners,, 20(8), 423-428. doi:10.1111/j.1745-7599.2008.00342.x Evans, A. J. (1994). Anticipatory grief: a theoretical challenge. Palliative Medicine, 8(2), 159-165. doi:10.1177/026921639400800211 Gignac, M. A., & Gottlieb, B. H. (1996). Caregivers' appraisals of efficacy in coping with dementia. Psychology and Aging, 11(2), 214-225. Guest, G., Bunce, A., & Johnson, L. (2006). How Many Interviews Are Enough? An Experiment with Data Saturation and Variability. Field Methods, 18(1), 59 - 82. Holloway, I., & Wheeler, S. (2010). Qualitative Research in Nursing and Healthcare, 3rd Edition. Chichester: Wiley-Blackwell. Huang, H. L., Shyu, Y. I., Chen, M. C., Huang, C. C., Kuo, H. C., Chen, S. T., & Hsu, W. C. (2015). Family caregivers' role implementation at different stages of dementia. Clinical Interventions in Aging, 10, 135-146. doi:10.2147/CIA.S60574 Hudson, P. L., & Hayman-White, K. (2006). Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments. Journal of Pain and Symptom Management, 31(3), 215-228. doi:10.1016/j.jpainsymman.2005.07.010 Hudson, P. L., Remedios, C., & Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9, 17. doi:10.1186/1472-684X-9-17 Hudson, P. L., Thomas, K., Trauer, T., Remedios, C., & Clarke, D. (2011). Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management, 41(3), 522-534. doi:10.1016/j.jpainsymman.2010.05.006 Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T., & Dixon, J. (2016). End of life care: A scoping review of experiences of Advance Care Planning for people with dementia. Dementia (London). doi:10.1177/1471301216676121 Karlawish, J. H. T., Quill, T., & Meier, D. E. (1999). A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity. Annals of Internal Medicine, 130(10), 835-840. doi:10.7326/0003-4819-130-10-199905180-00018 Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., . . . Cooper, C. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal, 341. Lord, K., Livingston, G., & Cooper, C. (2015). A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International Psychogeriatrics, 27(8), 1301-1312. doi:10.1017/S1041610215000411 Lundh, U., Sandberg, J., & Nolan, M. (2000). 'I don't have any other choice': spouses' experiences of placing a partner in a care home for older people in Sweden. Journal of Advanced Nursing, 32(5), 1178-1186. National Institute for Health and Care Excellence. (2010). Dementia: support in health and social care: Quality Standard 1. Retrieved from https://www.nice.org.uk/guidance/qs1/resources/dementia-support-in-health-and-social-care-pdf-58291027909. National Research Council. (2010). The Role of Human Factors in Home Health Care: Workshop Summary. Steve Olson, Rapporteur. Committee on the Role of Human Factors in Home Health Care, Committee on Human-Systems Integration. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academies Press Retrieved from https://www.nap.edu/read/12927/chapter/1#ii. Nikzad-Terhune, K. A., Anderson, K. A., Newcomer, R., & Gaugler, J. E. (2010). Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care, 49(8), 734-752. doi:10.1080/00981381003635296 Nolan, M., & Dellasega, C. (2000). 'I really feel I've let him down': supporting family carers during long-term care placement for elders. Journal of Advanced Nursing, 31(4), 759-767. Payne, S., Hudson, P., Grande, G., Oliviere, D., Tishelman, C., Pleschberger, S., . . . Kerr, C. (2010). White Paper on improving support for family carers in palliative care: Part 1. European Journal of Palliative Care, 17(5), 238-245. Peacock, S. C., Hammond-Collins, K., & Forbes, D. A. (2014). The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study. BMC Nursing, 13, 42. doi:10.1186/s12912-014-0042-x Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacol Bulletin, 24(4), 653-659. Ryan, A. A., & Scullion, H. F. (2000). Nursing home placement: an exploration of the experiences of family carers. Journal of Advanced Nursing, 32(5), 1187-1195. Saini, G., Sampson, E. L., Davis, S., Kupeli, N., Harrington, J., Leavey, G., . . . Moore, K. J. (2016). An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. BMC Palliative Care, 15, 55. doi:10.1186/s12904-016-0127-2 Schulz, R., Boerner, K., Shear, K., Zhang, S., & Gitlin, L. N. (2006). Predictors of Complicated Grief Among Dementia Caregivers: A Prospective Study of Bereavement. The American Journal of Geriatric Psychiatry, 14(8), 650-658. doi:https://doi.org/10.1097/01.JGP.0000203178.44894.db Schulz, R., & Eden, J. (Eds.). (2016). Families Caring for an Aging America. Washington (DC): National Acadenies Press (US). Schumacher, K. L., Stewart, B. J., & Archbold, P. G. (1998). Conceptualization and measurement of doing family caregiving well. Image - The Journal of Nursing Scholarship, 30(1), 63-69. Sclan, S. G., & Reisberg, B. (2005). Functional Assessment Staging (FAST) in Alzheimer's Disease: Reliability, Validity, and Ordinality. International Psychogeriatrics, 4(3), 55-69. doi:10.1017/S1041610292001157 Shanley, C., Russell, C., Middleton, H., & Simpson-Young, V. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10(3), 325-340. doi:10.1177/1471301211407794 Sluzki, C. E. (1992). Disruption and Reconstruction of Networks Following Migration/ Relocation Family Systems Medicine, 10, 359-363. Stewart, F., Goddard, C., Schiff, R., & Hall, S. (2011). Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age and Ageing, 40(3), 330-335. doi:10.1093/ageing/afr006 Torke, A. M., Schwartz, P. H., Holtz, L. R., Montz, K., & Sachs, G. A. (2013). Caregiver Perspectives on Cancer Screening for Persons with Dementia: “Why Put Them Through It?”. Journal of the American Geriatrics Society, 61(8), 1309-1314. doi:10.1111/jgs.12359 van der Steen, J. T., Radbruch, L., Hertogh, C. M., de Boer, M. E., Hughes, J. C., Larkin, P., . . . Volicer, L. (2014). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28(3), 197-209. doi:10.1177/0269216313493685 Vaux, A. (1988). Social Support: Theory, research and intervention. New York: Praeger. Watkins, J., Stanton, L., Saunders, B., Lasocki, J., Chung, P., & Hibberd, P. (2011). Working in partnership with family carers: the importance of learning from carers’ experiences. Quality in Ageing and Older Adults, 12(2), 103-108. Wilder, S. C., & Lanier, K. A. (2005). Preparing families to make informed decisions about long-term care. North Carolina Medical Journal, 66(1), 60-63. World Health Organisation. (2012). Dementia a Public Health Priority. Geneva: World Health Organisation Retrieved from http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf. Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., & Covinsky, K. E. (2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. Journal of the American Medical Association, 287(16), 2090-2097.",
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The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study. / CARTER, Gillian; MCLAUGHLIN, Dorry; Kernohan, W George; HUDSON, Peter; CLARKE, Mike; FROGGATT, Katherine; PASSMORE, Peter; BRAZIL, Kevin.

In: Journal of Advanced Nursing, Vol. 74, No. 0, 20.04.2018, p. 0-0.

Research output: Contribution to journalArticle

TY - JOUR

T1 - The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study

AU - CARTER, Gillian

AU - MCLAUGHLIN, Dorry

AU - Kernohan, W George

AU - HUDSON, Peter

AU - CLARKE, Mike

AU - FROGGATT, Katherine

AU - PASSMORE, Peter

AU - BRAZIL, Kevin

N1 - Reference text: Alzheimer's Disease International. (2016). World Alzheimer Report 2016: Improving healthcare for people living with dementia coverage, Quality and costs now and In the future. Retrieved from https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf Anesbensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch, C. J. (1995). Profiles in Caregiving: The Unexpected Carer. London, UK: Academic Press Ltd. Ashton, S. E., Roe, B., Jack, B., & McClelland, B. (2016). End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study. Dementia (London), 15(5), 958-975. doi:10.1177/1471301214548521 Barrera, M. (1986). Distinctions between social support concepts, measures, and models. American Journal of Community Psychology, 14, 413 - 445. Black, B. S., Fogarty, L. A., Phillips, H., Finucane, T., Loreck, D. J., Baker, A., . . . Rabins, P. V. (2009). Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care. Journal of Aging and Health, 21(4), 627-650. doi:10.1177/0898264309333316 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77 -101. Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., . . . Kernohan, W. G. (2017). Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine, 269216317722413. doi:10.1177/0269216317722413 Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217-228. Burke, P. J., & Stets, J. E. (2009). Identity Theory. New York, NY: Oxford University Press, Inc. Butcher, H. K., Holkup, P. A., Park, M., & Maas, M. (2001). Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Research in Nursing and Health, 24(6), 470-480. Caswell, G., Pollock, K., Harwood, R., & Porock, D. (2015). Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliative Care, 14(1), 35. doi:10.1186/s12904-015-0032-0 Cohen, S., & McKay, G. (1984). Social Support, Stress and the Buffering Hypothesis: A Theoretical Analysis. In A. Baum, S. E. Taylor, & J. E. e. Singer (Eds.), Handbook of Psychology and Health. NJ,Hillsdale: Erlbaum. Coombs, M. A. (2010). The mourning before: can anticipatory grief theory inform family care in adult intensive care? International Journal of Palliative Nursing, 16(12), 580-584. doi:10.12968/ijpn.2010.16.12.580 Davies, N., Maio, L., Rait, G., & Iliffe, S. (2014). Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis. Palliative Medicine, 28(7), 919-930. doi:10.1177/0269216314526766 Department for Constitutional Affairs. (2007). Mental Capacity Act 2005 Code of Practice. London: TSO (The Stationery Office). Department of Health (2010). Recognised,valued and supported: Next steps for the carers strategy. London: HM Government. Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners,, 20(8), 423-428. doi:10.1111/j.1745-7599.2008.00342.x Evans, A. J. (1994). Anticipatory grief: a theoretical challenge. Palliative Medicine, 8(2), 159-165. doi:10.1177/026921639400800211 Gignac, M. A., & Gottlieb, B. H. (1996). Caregivers' appraisals of efficacy in coping with dementia. Psychology and Aging, 11(2), 214-225. Guest, G., Bunce, A., & Johnson, L. (2006). How Many Interviews Are Enough? An Experiment with Data Saturation and Variability. Field Methods, 18(1), 59 - 82. Holloway, I., & Wheeler, S. (2010). Qualitative Research in Nursing and Healthcare, 3rd Edition. Chichester: Wiley-Blackwell. Huang, H. L., Shyu, Y. I., Chen, M. C., Huang, C. C., Kuo, H. C., Chen, S. T., & Hsu, W. C. (2015). Family caregivers' role implementation at different stages of dementia. Clinical Interventions in Aging, 10, 135-146. doi:10.2147/CIA.S60574 Hudson, P. L., & Hayman-White, K. (2006). Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments. Journal of Pain and Symptom Management, 31(3), 215-228. doi:10.1016/j.jpainsymman.2005.07.010 Hudson, P. L., Remedios, C., & Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9, 17. doi:10.1186/1472-684X-9-17 Hudson, P. L., Thomas, K., Trauer, T., Remedios, C., & Clarke, D. (2011). Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management, 41(3), 522-534. doi:10.1016/j.jpainsymman.2010.05.006 Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T., & Dixon, J. (2016). End of life care: A scoping review of experiences of Advance Care Planning for people with dementia. Dementia (London). doi:10.1177/1471301216676121 Karlawish, J. H. T., Quill, T., & Meier, D. E. (1999). A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity. Annals of Internal Medicine, 130(10), 835-840. doi:10.7326/0003-4819-130-10-199905180-00018 Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., . . . Cooper, C. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal, 341. Lord, K., Livingston, G., & Cooper, C. (2015). A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International Psychogeriatrics, 27(8), 1301-1312. doi:10.1017/S1041610215000411 Lundh, U., Sandberg, J., & Nolan, M. (2000). 'I don't have any other choice': spouses' experiences of placing a partner in a care home for older people in Sweden. Journal of Advanced Nursing, 32(5), 1178-1186. National Institute for Health and Care Excellence. (2010). Dementia: support in health and social care: Quality Standard 1. Retrieved from https://www.nice.org.uk/guidance/qs1/resources/dementia-support-in-health-and-social-care-pdf-58291027909. National Research Council. (2010). The Role of Human Factors in Home Health Care: Workshop Summary. Steve Olson, Rapporteur. Committee on the Role of Human Factors in Home Health Care, Committee on Human-Systems Integration. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academies Press Retrieved from https://www.nap.edu/read/12927/chapter/1#ii. Nikzad-Terhune, K. A., Anderson, K. A., Newcomer, R., & Gaugler, J. E. (2010). Do trajectories of at-home dementia caregiving account for burden after nursing home placement? A growth curve analysis. Social Work in Health Care, 49(8), 734-752. doi:10.1080/00981381003635296 Nolan, M., & Dellasega, C. (2000). 'I really feel I've let him down': supporting family carers during long-term care placement for elders. Journal of Advanced Nursing, 31(4), 759-767. Payne, S., Hudson, P., Grande, G., Oliviere, D., Tishelman, C., Pleschberger, S., . . . Kerr, C. (2010). White Paper on improving support for family carers in palliative care: Part 1. European Journal of Palliative Care, 17(5), 238-245. Peacock, S. C., Hammond-Collins, K., & Forbes, D. A. (2014). The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study. BMC Nursing, 13, 42. doi:10.1186/s12912-014-0042-x Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacol Bulletin, 24(4), 653-659. Ryan, A. A., & Scullion, H. F. (2000). Nursing home placement: an exploration of the experiences of family carers. Journal of Advanced Nursing, 32(5), 1187-1195. Saini, G., Sampson, E. L., Davis, S., Kupeli, N., Harrington, J., Leavey, G., . . . Moore, K. J. (2016). An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. BMC Palliative Care, 15, 55. doi:10.1186/s12904-016-0127-2 Schulz, R., Boerner, K., Shear, K., Zhang, S., & Gitlin, L. N. (2006). Predictors of Complicated Grief Among Dementia Caregivers: A Prospective Study of Bereavement. The American Journal of Geriatric Psychiatry, 14(8), 650-658. doi:https://doi.org/10.1097/01.JGP.0000203178.44894.db Schulz, R., & Eden, J. (Eds.). (2016). Families Caring for an Aging America. Washington (DC): National Acadenies Press (US). Schumacher, K. L., Stewart, B. J., & Archbold, P. G. (1998). Conceptualization and measurement of doing family caregiving well. Image - The Journal of Nursing Scholarship, 30(1), 63-69. Sclan, S. G., & Reisberg, B. (2005). Functional Assessment Staging (FAST) in Alzheimer's Disease: Reliability, Validity, and Ordinality. International Psychogeriatrics, 4(3), 55-69. doi:10.1017/S1041610292001157 Shanley, C., Russell, C., Middleton, H., & Simpson-Young, V. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10(3), 325-340. doi:10.1177/1471301211407794 Sluzki, C. E. (1992). Disruption and Reconstruction of Networks Following Migration/ Relocation Family Systems Medicine, 10, 359-363. Stewart, F., Goddard, C., Schiff, R., & Hall, S. (2011). Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families. Age and Ageing, 40(3), 330-335. doi:10.1093/ageing/afr006 Torke, A. M., Schwartz, P. H., Holtz, L. R., Montz, K., & Sachs, G. A. (2013). Caregiver Perspectives on Cancer Screening for Persons with Dementia: “Why Put Them Through It?”. Journal of the American Geriatrics Society, 61(8), 1309-1314. doi:10.1111/jgs.12359 van der Steen, J. T., Radbruch, L., Hertogh, C. M., de Boer, M. E., Hughes, J. C., Larkin, P., . . . Volicer, L. (2014). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28(3), 197-209. doi:10.1177/0269216313493685 Vaux, A. (1988). Social Support: Theory, research and intervention. New York: Praeger. Watkins, J., Stanton, L., Saunders, B., Lasocki, J., Chung, P., & Hibberd, P. (2011). Working in partnership with family carers: the importance of learning from carers’ experiences. Quality in Ageing and Older Adults, 12(2), 103-108. Wilder, S. C., & Lanier, K. A. (2005). Preparing families to make informed decisions about long-term care. North Carolina Medical Journal, 66(1), 60-63. World Health Organisation. (2012). Dementia a Public Health Priority. Geneva: World Health Organisation Retrieved from http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf. Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., & Covinsky, K. E. (2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. Journal of the American Medical Association, 287(16), 2090-2097.

PY - 2018/4/20

Y1 - 2018/4/20

N2 - Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.Design: Descriptive qualitative study Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke’s thematic analysis.Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer’s holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximise their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia our findings have international relevance for similar nursing homes across the world.

AB - Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.Design: Descriptive qualitative study Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke’s thematic analysis.Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer’s holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs’ dementia expertise to maximise their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia our findings have international relevance for similar nursing homes across the world.

KW - carers

KW - decision-making

KW - dementia

KW - end of life care

KW - nursing

KW - nursing home care

KW - nurse education

U2 - 10.1111/jan.13576

DO - 10.1111/jan.13576

M3 - Article

VL - 74

SP - 0

EP - 0

JO - Journal of Advanced Nursing

T2 - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

IS - 0

ER -