Hostname: page-component-586b7cd67f-dlnhk Total loading time: 0 Render date: 2024-11-26T05:14:59.842Z Has data issue: false hasContentIssue false

A second chance: Experiences and outcomes of people with dementia and their families participating in a dementia reablement program

Published online by Cambridge University Press:  16 January 2020

Miia Rahja*
Affiliation:
Department of Rehabilitation, aged and extended care, Flinders University, Adelaide, South Australia
Jennifer Culph
Affiliation:
Department of Rehabilitation, aged and extended care, Flinders University, Adelaide, South Australia
Lindy Clemson
Affiliation:
Department of Rehabilitation, aged and extended care, Flinders University, Adelaide, South Australia
Sally Day
Affiliation:
Department of Rehabilitation, aged and extended care, Flinders University, Adelaide, South Australia
Kate Laver
Affiliation:
Department of Rehabilitation, aged and extended care, Flinders University, Adelaide, South Australia
*
*Corresponding author. Email: [email protected]
Get access

Abstract

Rationale:

Evidence-based reablement programs for people with dementia and their caregivers are not routinely implemented in practice. These programs have been shown to be effective in delaying functional decline and improving caregiver wellbeing. Yet, little is known about the experiences of those participating in such programs.

Aim:

To describe experiences and outcomes of participating in a dementia reablement program, the Care of Persons with dementia in their Environments (COPE), in Australia.

Methods:

Purposeful sampling was used and semi-structured interviews were completed with people with dementia and their caregivers who received the COPE program in two different states in Australia. The interviews explored the participants’ experiences with the program as well as how they are managing after program completion. Thematic analysis was used to identify themes from the interviews. A Likert scale was used to rate the value of the program.

Results:

Ten dyads (person with dementia and/or their caregiver) were interviewed. Participation in the program was rated (mostly) very valuable. The ongoing collaboration between the therapist and caregiver was considered empowering. The program promoted participation in everyday activities for the person with dementia and appeared to give a ‘second chance’ to remain in their own homes and communities.

Conclusion:

Participation in reablement programs (such as the COPE program) has the potential to re-engage people with dementia in meaningful roles and activities in their chosen environments. A therapeutic relationship and individualized intervention approaches tailored to the participants’ needs and readiness foster positive experiences and confidence.

Type
Articles
Copyright
© Australasian Society for the Study of Brain Impairment 2020

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

Australian Institute of Health and Welfare. (2012). Dementia in Australia. Cat. No. AGE 70. Retrieved from Canberra https://www.aihw.gov.au/reports/dementia/dementia-in-australia/contents/table-of-contents.Google Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77101. doi:10.1191/1478088706qp063oa.Google Scholar
Brodaty, H., Seeher, K., & Gibson, L. (2012). Dementia time to death: A systematic literature review on survival time and years of life lost in people with dementia. International Psychogeriatrics, 24(7), 10341045. doi:10.1017/s1041610211002924.CrossRefGoogle ScholarPubMed
Brown, L., Hansnata, E., & La, H. A. (2017). Economic cost of dementia in Australia 2016-2056. Canberra: National Centre for Social and Economic Modelling & Alzheimer’s Australia. Retrieved from www.fightdementia.org.au.Google Scholar
Cations, M., Radisic, G., Crotty, M., & Laver, K. (2018). What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys. PLoS One, 13(4), e0196085. doi:10.1371/journal.pone.0196085.CrossRefGoogle ScholarPubMed
Clemson, L., Laver, K., Jeon, Y.-H., Comans, T., Scanlan, J. N., Rahja, M., … Gitlin, L. (2018). Implementation of an evidence-based intervention to improve the wellbeing of people with dementia and their carers: Study protocol for ‘Care of People with dementia in their Environments (COPE)’ in the Australian context. BMC Geriatrics, 18(1), 108. doi:10.1186/s12877-018-0790-7.CrossRefGoogle Scholar
Corvol, A., Netter, A., Campeon, A., & Somme, D. (2018). Implementation of an occupational therapy program for Alzheimer’s disease patients in France: Patients’ and caregivers’ perspectives. Journal of Alzheimer’s Disease, 62(1), 157164. doi:10.3233/jad-170765.CrossRefGoogle ScholarPubMed
Edwards, M. (2015). Family caregivers for people with dementia and the role of occupational therapy. Physical & Occupational Therapy in Geriatrics, 33(3), 220232. doi:10.3109/02703181.2015.1031926.CrossRefGoogle Scholar
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), 423428. doi:10.1111/j.1745-7599.2008.00342.x.CrossRefGoogle ScholarPubMed
Fortinsky, R., Gitlin, L., Pizzi, L., Piersol, C., Grady, J., Robison, J., & Molony, S. (2016). Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design. Contemporary Clinical Trials, 49, 155165. doi:10.1016/j.cct.2016.07.006.CrossRefGoogle Scholar
Gaugler, J. E., Wall, M. M., Kane, R. L., Menk, J. S., Sarsour, K., Johnston, J. A., … Newcomer, R. (2011). Does caregiver burden mediate the effects of behavioral disturbances on nursing home admission? American Journal of Geriatric Psychiatry, 19(6), 497506. doi:10.1097/JGP.0b013e31820d92cc.CrossRefGoogle ScholarPubMed
Gitlin, L., & Hodgson, N. (2015). Caregivers as therapeutic agents in dementia care: The context of caregiving and the evidence base for interventions. In Gaugler, J. E. & Kane, R. L. (Eds.), Family caregiving in the new normal (pp. 305353), San Diego: Academic Press.CrossRefGoogle Scholar
Gitlin, L. N., & Rose, K. (2014). Factors associated with caregiver readiness to use nonpharmacologic strategies to manage dementia-related behavioral symptoms. International Journal of Geriatric Psychiatry, 29(1), 93102. doi:10.1002/gps.3979.CrossRefGoogle ScholarPubMed
Gitlin, L., Winter, L., Dennis, M., Hodgson, N., & Hauck, W. (2010). A biobehavioral home-based intervention and the well-being of patiend with dementia and their caregivers: The COPE randomized trial. Journal of American Medical Association, 304(9), 983991. doi:10.1001/jama.2010.1253.Google Scholar
Hughes, T., Black, B., Albert, M., Gitlin, L., Johnson, D., Lyketsos, C., & Samus, Q. (2014). Correlates of objective and subjective measures of caregiver burden among dementia caregivers: Influence of unmet patient and caregiver dementia-related care needs. International Psychogeriatrics, 26(11), 18751883. doi:10.1017/S1041610214001240.CrossRefGoogle ScholarPubMed
Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J., & Langa, K. M. (2013). Monetary costs of dementia in the United States. New England Journal of Medicine, 368, 13261334. doi:10.1056/NEJMsa1204629.CrossRefGoogle ScholarPubMed
Hynes, S. M., Field, B., Ledgerd, R., Swinson, T., Wenborn, J., di Bona, L., … Orrell, M. (2016). Exploring the need for a new UK occupational therapy intervention for people with dementia and family carers: Community Occupational Therapy in Dementia (COTiD). A focus group study. Aging & Mental Health, 20(7), 762769. doi:10.1080/13607863.2015.1037243.CrossRefGoogle ScholarPubMed
Jennings, L. A., Reuben, D. B., Evertson, L. C., Serrano, K. S., Ercoli, L., Grill, J., … Wenger, N. S. (2015). Unmet needs of caregivers of individuals referred to a dementia care program. Journal of the American Geriatrics Society, 63(2), 282289. doi:10.1111/jgs.13251.CrossRefGoogle ScholarPubMed
Laver, K. (2016). Evidence-based occupational therapy for people with dementia and their family: What clinical practice guidelines tell us and implications for practice. Australian Occupational Therapy Journal, 66(4), 310. doi:10.1111/1440-1630.12309.Google Scholar
Laver, K., Clemson, L., Bennett, S., Lannin, N., & Brodaty, H. (2014). Unpacking the evidence: Interventions for reducing behavioral and psychological symptoms in people with dementia. Physical & Occupational Therapy in Geriatrics, 32(4), 294309. doi:10.3109/02703181.2014.934944.CrossRefGoogle Scholar
Laver, K., Milte, R., Dyer, S., & Crotty, M. (2017). A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia. Journal of Aging and Health, 29(8), 13081349. doi:10.1177/0898264316660414.CrossRefGoogle ScholarPubMed
Likert, R. (1932). A technique for the measurement of attitudes. Archives of Psychology, 140, 155.Google Scholar
Maslow, K. (2012). Translating innovation to impact: Evidence based interventions to support people with Alzheimer’s disease and their caregivers at home and in the community. Retrieved from https://www.agingresearch.org/publications/view/18#.WSvFOmiGM2w.Google Scholar
Michalowsky, B., Thyrian, J. R., Eichler, T., Hertel, J., Wucherer, D., Flessa, S., & Hoffmann, W. (2016). Economic analysis of formal care, informal care, and productivity losses in primary care patients who screened positive for dementia in Germany. Journal of Alzheimer’s Disease, 50(1), 4759. doi:10.3233/jad-150600.CrossRefGoogle ScholarPubMed
National Institute of Health. (2009). Dissemination and implementation research in health. Retrieved from https://grants.nih.gov/grants/guide/pa-files/par-10-038.html.Google Scholar
Palinkas, L. A., Aarons, G. A., Horwitz, S., Chamberlain, P., Hurlburt, M., & Landsverk, J. (2011). Mixed method designs in implementation research. Administration and Policy in Mental Health and Mental Health Services Research, 38(1), 4453. doi:10.1007/s10488-010-0314-z.CrossRefGoogle ScholarPubMed
Poulos, C., Bayer, A., Beaupre, L. A., Clare, L., Poulos, R. G., Wang, R. H., … McGilton, K. (2017). A comprehensive approach to reablement in dementia. Alzheimer’s & Dementia, 3(3), 450458. doi:10.1016/j.trci.2017.06.005.Google ScholarPubMed
QSR International Pty Ltd. (2018). Nvivo Qualitative Data Analysis Software. Version 12.Google Scholar
Quinn, C. (2017). Conducting interviews with people with dementia and their caregivers. SAGE Research Methods Cases. doi:10.4135/9781526404855.Google Scholar
Rahja, M., Comans, T., Clemson, L., Crotty, M., & Laver, K. (2018a). Are there missed opportunities for occupational therapy for people with dementia? An audit of practice in Australia. Australian Occupational Therapy Journal, 65, 565574. doi:10.1111/1440-1630.12514.CrossRefGoogle ScholarPubMed
Rahja, M., Comans, T., Clemson, L., Crotty, M., & Laver, K. (2018b). Economic evaluations of occupational therapy approaches for people with cognitive and/or functional decline: A systematic review. Health and Social Care in the Community, 26, 635653. doi:10.1111/hsc.12553.CrossRefGoogle Scholar
Rahja, M., & Laver, K. (2019). What does the Australian public know about occupational therapy for older people? A population survey. Australian Occupational Therapy Journal, 66(4), 511518. doi:10.1111/1440-1630.12578.CrossRefGoogle ScholarPubMed
Rahja, M., Laver, K., Comans, T., & Crotty, M. (2018). What does the Australian general public know about treatments for dementia? A population survey. Gerontology and Geriatric Medicine, 4. doi:10.1177/2333721418793442.CrossRefGoogle ScholarPubMed
Skladzien, E., Bowditch, K., & Rees, G. (2011). National strategies to address dementia: A report by Alzheimer’s Australia. Paper 25. Retrieved from Alzheimer’s Australia https://www.dementia.org.au/files/20111410_Paper_25_low_v2.pdf.Google Scholar
Smith, K., Flicker, L., Lautenschlager, N. T., Almeida, O. P., Atkinson, D., Dwyer, A., & LoGiudice, D. (2008). High prevalence of dementia and cognitive impairment in Indigenous Australians. Neurology, 71(19), 14701473. doi:10.1212/01.wnl.0000320508.11013.4f.CrossRefGoogle ScholarPubMed
Wimo, A., Jonsson, L., Gustavsson, A., McDaid, D., Ersek, K., Georges, J., … Valtonen, H. (2011). The economic impact of dementia in Europe in 2008-Cost estimates from the Eurocode project. International Journal of Geriatric Psychiatry, 26(8), 825832. doi:10.1002/gps.2610.CrossRefGoogle ScholarPubMed
World Health Organization. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO.Google Scholar
World Health Organization. (2017). Global action plan on the public health response to dementia: 2017–2025. Retrieved from https://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/.Google Scholar
Supplementary material: File

Rahja et al. supplementary material

Rahja et al. supplementary material

Download Rahja et al. supplementary material(File)
File 19.2 KB