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An analysis of carer burden among family carers of people with and without dementia in Ireland

Published online by Cambridge University Press:  02 June 2020

Áine Teahan ,
Attracta Lafferty ,
John Cullinan ,
Gerard Fealy  and
Eamon O’Shea
Áine Teahan*
Affiliation:
Centre for Economic and Social Research on Dementia (CESRD), NUI Galway, Galway, Ireland
Attracta Lafferty
Affiliation:
School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin, Ireland
John Cullinan
Affiliation:
School of Business and Economics, NUI Galway, Galway, Ireland
Gerard Fealy
Affiliation:
School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin, Ireland
Eamon O’Shea
Affiliation:
Centre for Economic and Social Research on Dementia (CESRD), NUI Galway, Galway, Ireland
*
Correspondence should be addressed to: Áine Teahan, Centre for Economic and Social Research on Dementia (CESRD), NUI Galway, Ireland. Phone: +35391495461. Email: [email protected].
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Abstract

Objective:

Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia.

Design:

Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care.

Setting:

The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland.

Participants:

The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia.

Measurements:

Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales.

Results:

In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively).

Conclusion:

Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

Keywords

family caregiverscaregiver burdenolder peopleAlzheimer’s disease
Type
Original Research Article
Information
International Psychogeriatrics , Volume 33 , Special Issue 4: Issue Theme: Caring for Caregivers of People with Dementia , April 2021 , pp. 347 - 358
Copyright
© International Psychogeriatric Association 2020

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References

Ali, S. and Bokharey, I.Z. (2015). Maladaptive cognitions and physical health of the caregivers of dementia: an interpretative phenomenological analysis. International Journal of Qualitative Studies on Health and Well-being, 10(1), 1–9. doi:10.3402/qhw.v10.28980 CrossRefGoogle ScholarPubMed
Bastawrous, M. (2013). Caregiver burden – a critical discussion. International Journal of Nursing Studies, 50(3), 431–441. doi:10.1016/j.ijnurstu.2012.10.005 CrossRefGoogle ScholarPubMed
Birtha, M. and Holm, K. (2017). Who cares? Brussels: COFACE Families Europe. Google Scholar
Branger, C., Burton, R., O’Connell, M.E., Stewart, N. and Morgan, D. (2016). Coping with cognitive impairment and dementia: rural caregivers’ perspectives. Dementia, 15(4), 814–831. doi:10.1177/1471301214539956 CrossRefGoogle ScholarPubMed
Brennan, S., Lawlor, B., Pertl, M., O’Sullivan, M., Begley, E. and O’Connell, C. (2017). De-Stress: A Study to Assess the Health and Well-being of Spousal Carers of People with Dementia in Ireland. Dublin: The Alzheimer Society of Ireland.Google Scholar
Brodaty, H., Woodward, M., Boundy, K., Ames, D. and Balshaw, R. (2014). Prevalence and predictors of burden in caregivers of people with dementia. The American Journal of Geriatric Psychiatry, 22(8), 756–765. doi:10.1016/j.jagp.2013.05.004 CrossRefGoogle ScholarPubMed
Brown, M. and Pitt-Catsouphes, M. (2013). Workplace characteristics and work-to-family conflict: does caregiving frequency matter? Journal of Gerontological Social Work, 56(5), 452–460. doi:10.1080/01634372.2013.792910 CrossRefGoogle ScholarPubMed
Bruvik, F.K., Ulstein, I.D., Ranhoff, A.H. and Engedal, K. (2013). The effect of coping on the burden in family carers of persons with dementia. Aging & Mental Health, 17(8), 973–978. doi:10.1080/13607863.2013.790928 CrossRefGoogle ScholarPubMed
Chappell, N.L., Dujela, C. and Smith, A. (2014). Spouse and adult child differences in caregiving burden. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 33(4), 462–472. doi:10.1017/S0714980814000336 CrossRefGoogle ScholarPubMed
Cheng, S.-T. (2017). Dementia caregiver burden: a research update and critical analysis. Current Psychiatry Reports, 19(9), 1–8. doi:10.1007/s11920-017-0818-2 CrossRefGoogle ScholarPubMed
Citizens Information. (2019). Carers allowance [Online]. Available at https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/carers/carers_allowance.html; last accessed 15 May 2020.Google Scholar
Colombo, F., Llena-Nozal, A., Mercier, J. and Tjadens, F. (2011). Help Wanted? Providing and Paying for Long-Term Care: Providing and Paying for Long-Term Care (Vol. 2011). Paris: OECD publishing.CrossRefGoogle Scholar
Connors, M.H., Seeher, K., Teixeira-Pinto, A., Woodward, M., Ames, D. and Brodaty, H. (2019). Mild cognitive impairment and caregiver burden: a 3-year-longitudinal study. The American Journal of Geriatric Psychiatry, 27(11), 1206–1215. doi:10.1016/j.jagp.2019.05.012 CrossRefGoogle ScholarPubMed
Cooper, C., Blanchard, M., Selwood, A., Walker, Z. and Livingston, G. (2010). Family carers’ distress and abusive behaviour: longitudinal study. The British Journal of Psychiatry, 196(6), 480–485. doi:10.1192/bjp.bp.109.071811 CrossRefGoogle ScholarPubMed
CSO. (2017). Census 2016. Dublin: Central Statistics Office.Google Scholar
De Vugt, M.E., Nicolson, N.A., Aalten, P., Lousberg, R., Jolle, J. and Verhey, F.R. (2005). Behavioral problems in dementia patients and salivary cortisol patterns in caregivers. The Journal of Neuropsychiatry and Clinical Neurosciences, 17(2), 201–207. doi:10.1176/jnp.17.2.201 CrossRefGoogle ScholarPubMed
Dillman, D.A. (2011). Mail and Internet Surveys: The Tailored Design Method – 2007 Update with New Internet, Visual, and Mixed-Mode Guide. Indianapolis: John Wiley & Sons.Google Scholar
Donnellan, W.J., Bennett, K.M. and Soulsby, L.K. (2015). What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study. Aging & Mental Health, 19(10), 932–939. doi:10.1080/13607863.2014.977771 CrossRefGoogle ScholarPubMed
Drageset, S. and Lindstrøm, T.C. (2005). Coping with a possible breast cancer diagnosis: demographic factors and social support. Journal of Advanced Nursing, 51(3), 217–226. doi:10.1111/j.1365-2648.2005.03495.x CrossRefGoogle ScholarPubMed
Egdell, V., Bond, J., Brittain, K. and Jarvis, H. (2010). Disparate routes through support: negotiating the sites, stages and support of informal dementia care. Health & Place, 16(1), 101–107. doi:10.1016/j.healthplace.2009.09.002 CrossRefGoogle ScholarPubMed
Eska, K., Graessel, E., Donath, C., Schwarzkopf, L., Lauterberg, J. and Holle, R. (2013). Predictors of institutionalization of dementia patients in mild and moderate stages: a 4-year prospective analysis. Dementia and Geriatric Cognitive Disorders Extra, 3(1), 426–445. doi:10.1159/000355079 CrossRefGoogle ScholarPubMed
Fillenbaum, G.G. (1988). Multidimensional Functional Assessment of Older Adults: The Duke Older Americans Resources and Services procedures. Hillsdale, NJ, US: Lawrence Erlbaum Associates, Inc.Google Scholar
Fillenbaum, G.G. and Smyer, M.A. (1981). The development, validity, and reliability of the OARS multidimensional functional assessment questionnaire. Journal of Gerontology, 36(4), 428–434. doi:10.1093/geronj/36.4.428 CrossRefGoogle ScholarPubMed
Garre-Olmo, J., Vilalta-Franch, J., Calvó-Perxas, L., Turró-Garriga, O., Conde-Sala, L. and López-Pousa, S. (2016). A path analysis of patient dependence and caregiver burden in Alzheimer’s disease. International Psychogeriatrics, 28(7), 1133–1141. doi:10.1017/S1041610216000223 CrossRefGoogle ScholarPubMed
Gaugler, J.E., Kane, R.L., Kane, R.A. and Newcomer, R. (2005). Early community-based service utilization and its effects on institutionalization in dementia caregiving. The Gerontologist, 45(2), 177–185. doi:10.1093/geront/45.2.177 CrossRefGoogle ScholarPubMed
Gaugler, J.E., Kane, R.L. and Newcomer, R. (2007). Resilience and transitions from dementia caregiving. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62(1), 38–44. doi:10.1093/geronb/62.1.p38 CrossRefGoogle ScholarPubMed
Gillespie, P. et al. (2013). The effects of dependence and function on costs of care for Alzheimer’s disease and mild cognitive impairment in Ireland. International Journal of Geriatric Psychiatry, 28(3), 256–264. doi:10.1002/gps.3819 CrossRefGoogle ScholarPubMed
Han, J.W. et al. (2014). Effects of social supports on burden in caregivers of people with dementia. International Psychogeriatrics, 26(10), 1639–1648. doi:10.1017/S1041610214001331 CrossRefGoogle ScholarPubMed
Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J. and Higginson, I.J. (2015). Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. Journal of Pain and Symptom Management, 50(4), 445–452. doi:10.1016/j.jpainsymman.2015.04.005 CrossRefGoogle ScholarPubMed
Hébert, R., Bravo, G. and Préville, M. (2000). Reliability, validity and reference values of the zarit burden interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 19(4), 494–507. doi:10.1017/S0714980800012484 CrossRefGoogle Scholar
Hughes, Z. (2018). Rural Carers in Ireland: Challenges & Opportunities. Dublin: Care Alliance Ireland. Google Scholar
Innes, A., Morgan, D. and Kostineuk, J. (2011). Dementia care in rural and remote settings: a systematic review of informal/family caregiving. Maturitas, 68(1), 34–46. doi:10.1016/j.maturitas.2010.10.002 CrossRefGoogle ScholarPubMed
Keating, N., Eales, J. and Phillips, J.E. (2013). Age-friendly rural communities: conceptualizing “best-fit”. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 32(4), 319–332. doi:10.1017/S0714980813000408 CrossRefGoogle ScholarPubMed
Kelley, A.S., McGarry, K., Gorges, R. and Skinner, J.S. (2015). The burden of health care costs for patients with dementia in the last 5 years of life. Annals of Internal Medicine, 163(10), 729–736. doi:10.7326/M15-0381 CrossRefGoogle ScholarPubMed
Kim, Y. and Schulz, R. (2008). Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20(5), 483–503. doi:10.1177/0898264308317533 CrossRefGoogle ScholarPubMed
Lafferty, A., Fealy, G., Downes, C. and Drennan, J. (2014). Family carers of older people: results of a national survey of stress, conflict and coping. NCPOP, University College Dublin.Google Scholar
Leinonen, E., Korpisammal, L., Pulkkinen, L.M. and Pukuri, T. (2001). The comparison of burden between caregiving spouses of depressive and demented patients. International Journal of Geriatric Psychiatry, 16(4), 387–393. doi:10.1002/gps.351 CrossRefGoogle ScholarPubMed
Leitner, S. (2003). Varieties of familialism: the caring function of the family in comparative perspective. European Societies, 5(4), 353–375. doi:10.1080/1461669032000127642 CrossRefGoogle Scholar
Levin, L. and Idler, E. (1981). The Hidden Health Care System: Mediating Structures and Medicine. Cambridge, MA: Ballinger Publishing Company.Google Scholar
Lin, W.-C., Tsai, C.-F., Wang, S.-J., Hwang, J.-P. and Fuh, J.-L. (2012). Comparison of the burdens of family caregivers and foreign paid caregivers of the individuals with dementia. International Psychogeriatrics, 24(12), 1953–1961. doi:10.1017/S1041610212001354 CrossRefGoogle ScholarPubMed
Liu, S. et al. (2018). Caregiver burden, sleep quality, depression, and anxiety in dementia caregivers: a comparison of frontotemporal lobar degeneration, dementia with Lewy bodies, and Alzheimer’s disease. International Psychogeriatrics, 30(8), 1131–1138. doi:10.1017/S1041610217002630 CrossRefGoogle ScholarPubMed
Livingston, G. et al. et al(2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184. doi:10.1136/bmj.c4184 CrossRefGoogle ScholarPubMed
Millenaar, J.K., Bakker, C., Koopmans, R.T., Verhey, F.R., Kurz, A. and de Vugt, M.E. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 31(12), 1261–1276. doi:10.1002/gps.4502 CrossRefGoogle ScholarPubMed
Mioshi, E. et al. et al(2013). The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Disease & Associated Disorders, 27(1), 68–73. doi:10.1097/WAD.0b013e318247a0bc CrossRefGoogle ScholarPubMed
Molyneux, G.J., McCarthy, G.M., McEniff, S., Cryan, M. and Conroy, R.M. (2008). Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service. International Psychogeriatrics, 20(6), 1193–1202. doi:10.1017/S1041610208007515 CrossRefGoogle Scholar
Montgomery, R.J., Stull, D.E. and Borgatta, E.F. (1985). Measurement and the analysis of burden. Research on Aging, 7(1), 137–152. doi:10.1177/0164027585007001007 CrossRefGoogle ScholarPubMed
Mudrazija, S. (2019). Work-related opportunity costs of providing unpaid family care in 2013 and 2050. Health Affairs, 38(6), 1003–1010. doi:10.1377/hlthaff.2019.00008 CrossRefGoogle ScholarPubMed
O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M. and De Leo, D. (2016). Suicidal ideation in family carers of people with dementia. Aging & Mental Health, 20(2), 222–230. doi:10.1002/gps.3941 CrossRefGoogle ScholarPubMed
O’Shea, E. (2003). Costs and consequences for the carers of people with dementia in Ireland. Dementia, 2(2), 201–219. doi:10.1177/1471301203002002005 CrossRefGoogle Scholar
O’Rourke, N. and Tuokko, H. (2000). The psychological and physical costs of caregiving: the canadian study of health and aging. Journal of Applied Gerontology, 19(4), 389–404. doi:10.1177/073346480001900402 CrossRefGoogle Scholar
O’Shea, E. et al. (2017). Developing and Implementing Dementia Policy in Ireland. Galway: Centre for Economic and Social Research on Dementia, NUI Galway.Google Scholar
OECD/EU. (2018). Health at a Glance: Europe 2018: State of Health in the EU Cycle. Paris: OECD Publishing.Google Scholar
Oliveira, D., Zarit, S.H. and Orrell, M. (2019). Health-promoting self-care in family caregivers of people with dementia: the views of multiple stakeholders. The Gerontologist, 59(5), e501–e511. doi:10.1093/geront/gnz029 Google ScholarPubMed
Papastavrou, E., Andreou, P., Middleton, N., Tsangari, H. and Papacostas, S. (2015). Dementia caregiver burden association with community participation aspect of social capital. Journal of Advanced Nursing, 71(12), 2898–2910. doi:10.1111/jan.12762 CrossRefGoogle ScholarPubMed
Park, M., Sung, M., Kim, S.K., Kim, S. and Lee, D.Y. (2015). Multidimensional determinants of family caregiver burden in Alzheimer’s disease. International Psychogeriatrics, 27(8), 1355–1364. doi:10.1017/S1041610215000460 CrossRefGoogle ScholarPubMed
Parkinson, M., Carr, S.M., Rushmer, R. and Abley, C. (2016). Investigating what works to support family carers of people with dementia: a rapid realist review. Journal of Public Health, 39(4), 290–301. doi:10.1093/pubmed/fdw100 Google Scholar
Pinquart, M. and Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging, 18(2), 250. doi:10.1037/0882-7974.18.2.250 CrossRefGoogle ScholarPubMed
Prince, M., Guerchet, M. and Prina, M. (2013). The Global Impact of Dementia 2013–2050. London: Alzheimer’s Disease International. Google Scholar
Quinn, C., Clare, L., McGuinness, T. and Woods, R.T. (2012). The impact of relationships, motivations, and meanings on dementia caregiving outcomes. International Psychogeriatrics, 24(11), 1816–1826. doi:10.1017/S1041610212000889 CrossRefGoogle ScholarPubMed
Riffin, C., Van Ness, P.H., Wolff, J.L. and Fried, T. (2019). Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society, 67(2), 277–283. doi:10.1111/jgs.15664 CrossRefGoogle Scholar
Savla, J., Granger, D.A., Roberto, K.A., Davey, A., Blieszner, R. and Gwazdauskas, F. (2013). Cortisol, alpha amylase, and daily stressors in spouses of persons with mild cognitive impairment. Psychology and Aging, 28(3), 666–679. doi:10.1037/a0032654 CrossRefGoogle ScholarPubMed
Shurgot, G.R. and Knight, B.G. (2005). Influence of neuroticism, ethnicity, familism, and social support on perceived burden in dementia caregivers: pilot test of the transactional stress and social support model. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60(6), 331–334. doi:10.1093/geronb/60.6.p331 CrossRefGoogle ScholarPubMed
Spasova, S., Baeten, R., Coster, S., Ghailani, D., Peña-Casas, R. and Vanhercke, B. (2018). Challenges in Long-Term Care in Europe. A Study of National Policies, European Social Policy Network (ESPN). Brussels: European Commission.Google Scholar
Stansfeld, S. et al. (2014). Stressors and common mental disorder in informal carers–an analysis of the english adult psychiatric morbidity survey 2007. Social Science & Medicine, 120, 190–198. doi:10.1016/j.socscimed.2014.09.025 CrossRefGoogle ScholarPubMed
StataCorp. (2017). Stata Statistical Software: Release 15. College Station, TX: StataCorp LLC.Google Scholar
Tolkacheva, N., Van Groenou, M.B., De Boer, A. and Van Tilburg, T. (2011). The impact of informal care-giving networks on adult children’s care-giver burden. Ageing & Society, 31(1), 34–51. doi:10.1017/S0144686X10000711 CrossRefGoogle ScholarPubMed
Van Durme, T., Macq, J., Jeanmart, C. and Gobert, M. (2012). Tools for measuring the impact of informal caregiving of the elderly: a literature review. International Journal of Nursing Studies, 49(4), 490–504. doi:10.1016/j.ijnurstu.2011.10.011 CrossRefGoogle ScholarPubMed
Vasse, E. et al. (2012). Guidelines for psychosocial interventions in dementia care: a European survey and comparison. International Journal of Geriatric Psychiatry, 27(1), 40–48. doi:10.1002/gps.2687 CrossRefGoogle ScholarPubMed
World Health Organisation. (2012). Dementia: A Public Health Priority. United Kingdom: World Health Organisation.Google Scholar
World Health Organisation. (2017). Global Action Plan on the Public Health Response to Dementia 2017–2025. World Health Organisation.Google Scholar
Zarit, S. and Zarit, J. (1987). Instructions for the burden interview. University Park: Pennsylvania State University. Google Scholar
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