Hostname: page-component-6bf8c574d5-956mj Total loading time: 0 Render date: 2025-02-23T16:33:26.158Z Has data issue: false hasContentIssue false
  • English
  • Français

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

Published online by Cambridge University Press:  26 January 2017

Ashley Macleod Open the ORCID record for Ashley Macleod [Opens in a new window] ,
Gemma Tatangelo ,
Marita McCabe  and
Emily You
Ashley Macleod*
Affiliation:
The Institute for Health and Ageing, Australian Catholic University, Melbourne, Australia
Gemma Tatangelo
Affiliation:
The Institute for Health and Ageing, Australian Catholic University, Melbourne, Australia
Marita McCabe
Affiliation:
The Institute for Health and Ageing, Australian Catholic University, Melbourne, Australia
Emily You
Affiliation:
Academic Unit for Psychiatry of Old Age, Department of Psychiatry, University of Melbourne, Melbourne, Australia
*
Correspondence should be addressed to: Ashley Macleod, Institute for Health and Ageing, Level 6, 215 Spring Street, Melbourne 3000Australia. Phone: +61 3 9230 8103. Email: [email protected].
Get access

Abstract

Background:

Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.

Method:

Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.

Results:

Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.

Conclusion:

Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Keywords

agingdementiacarersqualitative researchservices
Type
Research Article
Information
International Psychogeriatrics , Volume 29 , Issue 5 , May 2017 , pp. 765 - 776
Copyright
Copyright © International Psychogeriatric Association 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Attride-Stirling, J. (2001). Thematic networks: an analytic tool for qualitative research. Qualitative Research, 1, 385–405.Google Scholar
Australian Institute of Health and Welfare (2012). Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW.Google Scholar
Biegel, D. E., Bass, D. M., Schulz, R. and Morycz, R. (1993). Predictors of in-home and out-of-home service use by family caregivers of Alzheimer's disease patients. Journal of Aging and Health, 5, 419–438.CrossRefGoogle ScholarPubMed
Black, B. S. et al. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing Independence at home study. Journal of the American Geriatrics Society, 61, 2087–2095.Google Scholar
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.Google Scholar
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.CrossRefGoogle ScholarPubMed
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J. and López-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: an exploratory comparative design. International Journal of Nursing Studies, 47, 1262–1273.CrossRefGoogle ScholarPubMed
Done, D. and Thomas, J. (2001). Training in communication skills for informal carers of people suffering from dementia: a cluster randomized clinical trial comparing a therapist led workshop and a booklet. International Journal of Geriatric Psychiatry, 16, 816–821.Google Scholar
Eagar, K. et al. (2007). Effective caring: a synthesis of the international evidence on carer needs and interventions. Centre for Health Service Development, University of Wollongong.Google Scholar
Egan, M., Bérubé, D., Racine, G., Leonard, C. and Rochon, E. (2010). Methods to enhance verbal communication between individuals with Alzheimer's disease and their formal and informal caregivers: a systematic review. International Journal of Alzheimer's Disease, 2010.CrossRefGoogle ScholarPubMed
Eggenberger, E., Heimerl, K. and Bennett, M. I. (2013). Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics, 25, 345–358.Google Scholar
Gill, L. et al. (2016). Consumer directed care in Australia: early perceptions and experiences of staff, clients and carers. Health and Social Care in the Community.Google Scholar
Greenwood, N. and Smith, R. (2015). Barriers and facilitators for male carers in accessing formal and informal support: a systematic review. Maturitas, 82, 162–169.Google Scholar
Health Outcomes International. (2011). Review of Social Support and Respite in Home and Community Care (HACC) and Aged Care. Kent Town, South Australia: Victorian Department of Health.Google Scholar
Hepburn, K. W., Tornatore, J., Center, B. and Ostwald, S. W. (2001). Dementia family caregiver training: affecting beliefs about caregiving and caregiver outcomes. Journal of the American Geriatrics Society, 49, 450–457. doi:10.1046/j.1532-5415.2001.49090.x.Google Scholar
Hochgraeber, I., Von Kutzleben, M., Bartholomeyczik, S. and Holle, B. (2015). Low-threshold support services for people with dementia within the scope of respite care in Germany – a qualitative study on different stakeholders' perspective. Dementia (London, England).Google Scholar
Johansson, A. (2014). Remaining connected despite separation – former family caregivers' experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home. Aging and Mental Health, 18, 1029.Google Scholar
Kosloski, K. and Montgomery, R. J. (1994). Investigating patterns of service use by families providing care for dependent elders. Journal of Aging and Health, 6, 17–37.CrossRefGoogle ScholarPubMed
Kosloski, K., Montgomery, R. J. and Youngbauer, J. G. (2001). Utilization of respite services: a comparison of users, seekers, and nonseekers. Journal of Applied Gerontology, 20, 111–132.Google Scholar
Losada, A., Montorio, I., Knight, B. G., Márquez, M. and Izal, M. (2006). Explanation of caregivers distress from the cognitive model: the role of dysfunctional thoughts. Psicología Conductual, 14, 115.Google Scholar
Low, L.-F., Chilko, N., Gresham, M., Barter, S. and Brodaty, H. (2012). An update on the pilot trial of consumer-directed care for older persons in Australia. Australasian Journal on Ageing, 31, 47–51. doi:10.1111/j.1741-6612.2011.00572.x Google Scholar
Márquez-González, M., Losada, A., Izal, M., Pérez-Rojo, G. and Montorio, I. (2007). Modification of dysfunctional thoughts about caregiving in dementia family caregivers: description and outcomes of an intervention programme. Aging & Mental Health, 11, 616–625.CrossRefGoogle ScholarPubMed
Morhardt, D. (2011). Accessing community-based and long-term care services: challenges facing persons with frontotemporal dementia and their families. Journal of Molecular Neuroscience, 45, 737–741.Google Scholar
Morris, J. C. (1997). Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. International Psychogeriatrics, 9, 173–176.CrossRefGoogle ScholarPubMed
Neville, C., Beattie, E., Fielding, E. and Macandrew, M. (2015). Literature review: use of respite by carers of people with dementia. Health and Social Care in the Community, 23, 51–63.CrossRefGoogle ScholarPubMed
O'Connell, B., Hawkins, M., Ostaszkiewicz, J. and Millar, L. (2012). Carers' perspectives of respite care in Australia: an evaluative study. Contemporary Nurse: A Journal for the Australian Nursing Profession, 41, 111–119.Google Scholar
Ottmann, G. and Mohebbi, M. (2014). Self-directed community services for older Australians: a stepped capacity-building approach. Health and Social Care in the Community, 22, 598–611.Google Scholar
Parker, D., Mills, S. and Abbey, J. (2008). Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. International Journal of Evidence-Based Healthcare, 6, 137–172.Google ScholarPubMed
Phillipson, L., Jones, S. C. and Magee, C. (2014). A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. Health and Social Care in the Community, 22, 1–12.Google Scholar
Prince, M. et al. (2015). The global impact of dementia: an analysis of prevalence, incidence, cost and trends. World Alzheimer Report.Google Scholar
Selwood, A., Johnston, K., Katona, C., Lyketsos, C. and Livingston, G. (2007). Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders, 101, 75–89.Google Scholar
Shanley, C. et al. (2012). A qualitative study into the use of formal services for dementia by carers from culturally and linguistically diverse (CALD) communities. BMC Health Services Research, 12, 354–354.Google Scholar
Tilly, J. and Rees, G. (2007). Consumer-directed care: a way to empower consumers. Alzheimer's Australia.Google Scholar
Winslow, B. W. (2003). Family caregivers' experiences with community services: a qualitative analysis. Public Health Nursing, 20, 341–348.CrossRefGoogle ScholarPubMed