What Do Rural Dementia Caregivers Find Stressful?
Affiliation(s)
1 Rural Health Academic Centre, University of Melbourne, Shepparton, Australia. 2 Goulburn Valley Family Care, Shepparton, Australia. 3 Centre for Nursing & Health Studies, Athabasca University, Athabasca, Canada.
1 Rural Health Academic Centre, University of Melbourne, Shepparton, Australia. 2 Goulburn Valley Family Care, Shepparton, Australia. 3 Centre for Nursing & Health Studies, Athabasca University, Athabasca, Canada.
ABSTRACT
This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.
This study aimed to determine what carers of people with dementia in rural Australia found stressful in their caring role. It was part of a broader mixed methods study exploring carer depression, anxiety and stress and utilisation of formal community support services. The findings suggest that carer stress varies among individuals, but that a predominant source of stress is the unremitting burden experienced when caring for someone with dementia. Improved utilisation of support services in rural areas and tailoring services to individual carers dependent on the source of stress is recommended.
Cite this paper
Ervin, K. , Reid, C. and Moore, S. (2015) What Do Rural Dementia Caregivers Find Stressful?. Open Journal of Nursing, 5, 370-375. doi: 10.4236/ojn.2015.54040.
Ervin, K. , Reid, C. and Moore, S. (2015) What Do Rural Dementia Caregivers Find Stressful?. Open Journal of Nursing, 5, 370-375. doi: 10.4236/ojn.2015.54040.
References
[1] Access Economics (2010) Projections of Dementia Prevalence and Incidence in Victoria 2010-2050: Department of Health Regions and Statistical Local Areas. Report for Alzheimers Australia, Canberra. [2] Margallo-Lana, M., Swan, A., O’Brien, J., Fairbairn, A., Reichelt, K., Potkins, D., Mynt, P. and Ballard, D. (2001) Prevalence and Pharmacological Management of Behavioural and Psychological Symptoms amongst Dementia Sufferers Living in Care Environments. International Journal of Geriatric Psychiatry, 16, 39-44.
http://dx.doi.org/10.1002/1099-1166(200101)16:1<39::AID-GPS269>3.0.CO;2-F [3] Kaufer, D., Cummings, J., Ketchel, P., Smith, V., MacMillan, A., Shelley, T., Lopez, O. and DeKosky, S. (2000) Validation of the NPI-Q, a Brief Clinical Form of the Neuropsychiatric Inventory. The Journal of Neuropsychiatry and Clinical Neurosciences, 12, 233-239. [4] Livingston, G. (2014) Alzheimers Association International Conference (AAIC). Abstract p4-345, Presented July 16th. [5] Australian Institute of Health and Welfare (AIHW) (2014) Patterns in Use of Aged Care. Data Linkage Series, Number 18. [6] Chene, B. (2006) Dementia and Residential Placement: A View from the Carer’s Perspective. Qualitative Social Work, 5, 187-215.
http://dx.doi.org/10.1177/1473325006064257 [7] Wilks, S. and Croom, B. (2008) Perceived Stress and Resilience in Alzheimer’s Disease Caregivers: Testing Moderation and Mediation Models of Support. Aging and Mental Health, 12, 357-365.
http://dx.doi.org/10.1080/13607860801933323 [8] Pallant, J. and Reid, C. (2014) Measuring Positive and Negative Aspects of the Caring Role in Community versus Aged Care Setting. Australasian Journal on Ageing, 33, 244-249.
http://dx.doi.org/10.1111/ajag.12046 [9] Australian Institute of Health and Welfare (AIHW) (2011) Australia’s Welfare 2011. Australia’s Welfare Series, 10 (AUS 142), AIHW, Canberra. [10] Ervin, K., Reid, C. and Pallant, J. (2014) Carer Distress in Dementia in Rural Victoria. Australasian Journal on Ageing, Early View (Online Version of Record published before inclusion in an issue).
http://dx.doi.org/10.1111/ajag.12158 [11] O’Dwyer, S., Moyle, W. and van Wyk, S. (2013) Suicidal Ideation and Resilience in Family Carers of People with Dementia: A Pilot Qualitative Study. Aging and Mental Health, 17, 753-760.
http://dx.doi.org/10.1080/13607863.2013.789001 [12] Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005) Why Caregivers of People with Dementia and Memory Loss Don’t Use Services. International Journal of Geriatric Psychiatry, 20, 537-546.
http://dx.doi.org/10.1002/gps.1322 [13] Ervin, K. and Reid, C. (2014) Service Utilisation by Carers of People with Dementia in Rural Victoria. Australasian Journal on Ageing, Published Online.
http://dx.doi.org/10.1111/ajag.12162 [14] Lovibond, S. and Lovibond, P. (1995) Manual for the Depression Anxiety Stress Scales. 2nd Edition, Psychology Foundation, Sydney. [15] Henry, J. and Crawford, J. (2005) The Short-Form Version of the Depression Anxiety Stress Scales (DASS-21): Construct Validity and Normative Data in a Large Non-Clinical Sample. British Journal of Clinical Psychology, 44, 227-239.
http://dx.doi.org/10.1348/014466505X29657 [16] Jeon, Y., Sansoni, J., Low, L.F., Chenoweth, L., Zapart, S., Sansoni, E. and Marosszeky, N. (2011) Recommended Measures for the Assessment of Behavioral Disturbances Associated with Dementia. American Journal of Geriatric Psychiatry, 19, 403-415.
http://dx.doi.org/10.1097/JGP.0b013e3181ef7a0d [17] Alzheimer’s Australia (2014) Memory Loss. A Caregivers Guide.
http://www.memoryloss.org.au/caring_for_caregivers/healthy_living_strategies.aspx [18] Etters, L., Goodall, D. and Harrison, B. (2007) Caregiver Burden among Dementia Patient Caregivers: A Review of the Literature. Journal of the American Academy of Nurse Practitioners, 20, 423-428. [19] Gaugler, J.E., Duval, S., Anderson, K.A. and Kane, R.T. (2007) Predicting Nursing Home Admission in the US: A Meta-Analysis. BMC Geriatrics, 7, 13.
http://dx.doi.org/10.1186/1471-2318-7-13 [20] Greenwood, N., Habibi, R. and Mackenzie, A. (2012) Respite: Carers Experiences and Perceptions of Respite at Home. BMC Geriatrics, 12, 42.
http://dx.doi.org/10.1186/1471-2318-12-42 [21] McConaghy, R. and Caltabiano, M.L. (2005) Caring for a Person with Dementia: Exploring Relationships between Perceived Burden, Depression, Coping and Well-Being. Nursing & Health Sciences, 7, 81-91.
http://dx.doi.org/10.1111/j.1442-2018.2005.00213.x [22] Shaji, K., George, R., Prince, M. and Jacob, K. (2009) Behavioral Symptoms and Caregiver Burden in Dementia. Indian Journal of Psychiatry, 51, 45-49. [23] Slade, A., Fear, J. and Tennant, A. (2006) Identifying Patients at Risk of Nursing Home Admission: The Leeds Elderly Assessment Dependency Screening Tool (LEADS). BMC Health Services Research, 6, 31. [24] Martin, Y., Gilbert, P., McEwan, K. and Irons, C. (2006) The Relation of Entrapment, Shame and Guilt to Depression, in Carers of People with Dementia. Aging & Mental Health, 10, 101-106.
http://dx.doi.org/10.1080/13607860500311953 [25] Pearlin, L.I. and Schooler, C. (1978) The Structure of Coping. Journal of Health and Social Behavior, 19, 2-21.
http://dx.doi.org/10.2307/2136319 [26] Lindauer, A. and Harvath, T.A. (2014) Pre-Death Grief in the Context of Dementia Caregiving: A Concept Analysis. Journal of Advanced Nursing, 70, 2196-2207.
http://dx.doi.org/10.1111/jan.12411
[1] Access Economics (2010) Projections of Dementia Prevalence and Incidence in Victoria 2010-2050: Department of Health Regions and Statistical Local Areas. Report for Alzheimers Australia, Canberra. [2] Margallo-Lana, M., Swan, A., O’Brien, J., Fairbairn, A., Reichelt, K., Potkins, D., Mynt, P. and Ballard, D. (2001) Prevalence and Pharmacological Management of Behavioural and Psychological Symptoms amongst Dementia Sufferers Living in Care Environments. International Journal of Geriatric Psychiatry, 16, 39-44.
http://dx.doi.org/10.1002/1099-1166(200101)16:1<39::AID-GPS269>3.0.CO;2-F [3] Kaufer, D., Cummings, J., Ketchel, P., Smith, V., MacMillan, A., Shelley, T., Lopez, O. and DeKosky, S. (2000) Validation of the NPI-Q, a Brief Clinical Form of the Neuropsychiatric Inventory. The Journal of Neuropsychiatry and Clinical Neurosciences, 12, 233-239. [4] Livingston, G. (2014) Alzheimers Association International Conference (AAIC). Abstract p4-345, Presented July 16th. [5] Australian Institute of Health and Welfare (AIHW) (2014) Patterns in Use of Aged Care. Data Linkage Series, Number 18. [6] Chene, B. (2006) Dementia and Residential Placement: A View from the Carer’s Perspective. Qualitative Social Work, 5, 187-215.
http://dx.doi.org/10.1177/1473325006064257 [7] Wilks, S. and Croom, B. (2008) Perceived Stress and Resilience in Alzheimer’s Disease Caregivers: Testing Moderation and Mediation Models of Support. Aging and Mental Health, 12, 357-365.
http://dx.doi.org/10.1080/13607860801933323 [8] Pallant, J. and Reid, C. (2014) Measuring Positive and Negative Aspects of the Caring Role in Community versus Aged Care Setting. Australasian Journal on Ageing, 33, 244-249.
http://dx.doi.org/10.1111/ajag.12046 [9] Australian Institute of Health and Welfare (AIHW) (2011) Australia’s Welfare 2011. Australia’s Welfare Series, 10 (AUS 142), AIHW, Canberra. [10] Ervin, K., Reid, C. and Pallant, J. (2014) Carer Distress in Dementia in Rural Victoria. Australasian Journal on Ageing, Early View (Online Version of Record published before inclusion in an issue).
http://dx.doi.org/10.1111/ajag.12158 [11] O’Dwyer, S., Moyle, W. and van Wyk, S. (2013) Suicidal Ideation and Resilience in Family Carers of People with Dementia: A Pilot Qualitative Study. Aging and Mental Health, 17, 753-760.
http://dx.doi.org/10.1080/13607863.2013.789001 [12] Brodaty, H., Thomson, C., Thompson, C. and Fine, M. (2005) Why Caregivers of People with Dementia and Memory Loss Don’t Use Services. International Journal of Geriatric Psychiatry, 20, 537-546.
http://dx.doi.org/10.1002/gps.1322 [13] Ervin, K. and Reid, C. (2014) Service Utilisation by Carers of People with Dementia in Rural Victoria. Australasian Journal on Ageing, Published Online.
http://dx.doi.org/10.1111/ajag.12162 [14] Lovibond, S. and Lovibond, P. (1995) Manual for the Depression Anxiety Stress Scales. 2nd Edition, Psychology Foundation, Sydney. [15] Henry, J. and Crawford, J. (2005) The Short-Form Version of the Depression Anxiety Stress Scales (DASS-21): Construct Validity and Normative Data in a Large Non-Clinical Sample. British Journal of Clinical Psychology, 44, 227-239.
http://dx.doi.org/10.1348/014466505X29657 [16] Jeon, Y., Sansoni, J., Low, L.F., Chenoweth, L., Zapart, S., Sansoni, E. and Marosszeky, N. (2011) Recommended Measures for the Assessment of Behavioral Disturbances Associated with Dementia. American Journal of Geriatric Psychiatry, 19, 403-415.
http://dx.doi.org/10.1097/JGP.0b013e3181ef7a0d [17] Alzheimer’s Australia (2014) Memory Loss. A Caregivers Guide.
http://www.memoryloss.org.au/caring_for_caregivers/healthy_living_strategies.aspx [18] Etters, L., Goodall, D. and Harrison, B. (2007) Caregiver Burden among Dementia Patient Caregivers: A Review of the Literature. Journal of the American Academy of Nurse Practitioners, 20, 423-428. [19] Gaugler, J.E., Duval, S., Anderson, K.A. and Kane, R.T. (2007) Predicting Nursing Home Admission in the US: A Meta-Analysis. BMC Geriatrics, 7, 13.
http://dx.doi.org/10.1186/1471-2318-7-13 [20] Greenwood, N., Habibi, R. and Mackenzie, A. (2012) Respite: Carers Experiences and Perceptions of Respite at Home. BMC Geriatrics, 12, 42.
http://dx.doi.org/10.1186/1471-2318-12-42 [21] McConaghy, R. and Caltabiano, M.L. (2005) Caring for a Person with Dementia: Exploring Relationships between Perceived Burden, Depression, Coping and Well-Being. Nursing & Health Sciences, 7, 81-91.
http://dx.doi.org/10.1111/j.1442-2018.2005.00213.x [22] Shaji, K., George, R., Prince, M. and Jacob, K. (2009) Behavioral Symptoms and Caregiver Burden in Dementia. Indian Journal of Psychiatry, 51, 45-49. [23] Slade, A., Fear, J. and Tennant, A. (2006) Identifying Patients at Risk of Nursing Home Admission: The Leeds Elderly Assessment Dependency Screening Tool (LEADS). BMC Health Services Research, 6, 31. [24] Martin, Y., Gilbert, P., McEwan, K. and Irons, C. (2006) The Relation of Entrapment, Shame and Guilt to Depression, in Carers of People with Dementia. Aging & Mental Health, 10, 101-106.
http://dx.doi.org/10.1080/13607860500311953 [25] Pearlin, L.I. and Schooler, C. (1978) The Structure of Coping. Journal of Health and Social Behavior, 19, 2-21.
http://dx.doi.org/10.2307/2136319 [26] Lindauer, A. and Harvath, T.A. (2014) Pre-Death Grief in the Context of Dementia Caregiving: A Concept Analysis. Journal of Advanced Nursing, 70, 2196-2207.
http://dx.doi.org/10.1111/jan.12411