Hostname: page-component-8448b6f56d-jr42d Total loading time: 0 Render date: 2024-04-24T04:08:13.040Z Has data issue: false hasContentIssue false
  • English
  • Français

Acceptability and willingness to participate in the Tailored Activity Program: perceptions of people living with dementia, their care partners and health professionals

Published online by Cambridge University Press:  28 October 2020

Sally Bennett Open the ORCID record for Sally Bennett [Opens in a new window] ,
Catherine Travers Open the ORCID record for Catherine Travers [Opens in a new window] ,
Jacki Liddle Open the ORCID record for Jacki Liddle [Opens in a new window] ,
Sandra Smith ,
Lindy Clemson ,
Maria O’Reilly Open the ORCID record for Maria O’Reilly [Opens in a new window] ,
Michelle Allen ,
Kate Laver ,
Elizabeth Beattie  and
Lee-Fay Low
...Show all authors
Sally Bennett*
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia
Catherine Travers
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia
Jacki Liddle
Affiliation:
ARC Centre of Excellence for the Dynamics of Language, School of Information Technology and Electrical Engineering, The University of Queensland, Brisbane, Australia
Sandra Smith
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia
Lindy Clemson
Affiliation:
Faculty of Health Sciences, The University of Sydney, Sydney, Australia
Maria O’Reilly
Affiliation:
School of Health, Medical and Applied Sciences, CQUniversity, Bundaberg, Australia
Michelle Allen
Affiliation:
Qualitative Research Consultancy, Brisbane, Australia
Kate Laver
Affiliation:
Department of Rehabilitation Aged & Extended Care, Flinders University, Adelaide, Australia
Elizabeth Beattie
Affiliation:
School of Nursing, Queensland University of Technology, Brisbane, Australia
Lee-Fay Low
Affiliation:
Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
Claire O’Connor
Affiliation:
Centre for Positive Ageing, HammondCare, Sydney, Australia School of Public Health and Community Medicine, University of New South Wales, Sydney, Australia
Laura N. Gitlin
Affiliation:
College of Nursing and Health Professions, Drexel University, Philadelphia, USA
*
*Corresponding author. Email: sally.bennett@uq.edu.au
Get access

Abstract

Objectives:

The Tailored Activity Program (TAP) is an evidence-based occupational therapist-led intervention for people living with dementia and their care partners at home, developed in the USA. This study sought to understand its acceptability to people living with dementia, their care partners, and health professionals, and factors that might influence willingness to participate prior to its implementation in Australia.

Methods:

This study used qualitative descriptive methods. Semi-structured interviews were conducted with people living with dementia in the community (n = 4), their care partners (n = 13), and health professionals (n = 12). People living with dementia were asked about health professionals coming to their home to help them engage in activities they enjoy, whereas care partners’ and health professionals’ perspectives of TAP were sought, after it was described to them. Interviews were conducted face-to-face or via telephone. All interviews were recorded and transcribed. Framework analysis was used to identify key themes.

Results:

Analysis identified four key themes labelled: (i) TAP sounds like a good idea; (ii) the importance of enjoyable activities; (iii) benefits for care partners; and (iv) weighing things up. Findings suggest the broad, conditional acceptability of TAP from care partners and health professionals, who also recognised challenges to its use. People living with dementia expressed willingness to receive help to continue engaging in enjoyable activities, if offered.

Discussion:

While TAP appeared generally acceptable, a number of barriers were identified that must be considered prior to, and during its implementation. This study may inform implementation of non-pharmacological interventions more broadly.

Keywords

Dementiaimplementationoccupational therapyqualitative
Type
Articles
Information
Brain Impairment , Volume 21 , Special Issue 3: Knowledge translation and dementia care , December 2020 , pp. 259 - 273
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

Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179–211.CrossRefGoogle Scholar
Alzheimer’s Association. (2015). 2015 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 11(3), 332–382. doi: 10.1016/j.jalz.2015.02.003.CrossRefGoogle Scholar
Australian Institute of Health and Welfare (AIHW). (2015). Australia’s Welfare 2015. Australia’s welfare series no. 12. Cat. no. AUS 189. Retrieved from https://www.aihw.gov.au/getmedia/231c6801-9956-46b4-af2c-7c778290122c/AW15-6-3-Older-Australians-and-the-use-of-aged-care.pdf.aspx Google Scholar
Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss don’t use services. International Journal of Geriatric Psychiatry, 20(6), 537–546. doi: 10.1002/gps.1322.CrossRefGoogle ScholarPubMed
Cane, J., O’Connor, D., & Michie, S. (2012). Validation of the theoretical domains framework for use in behaviour change and implementation research. Implementation Science, 7, 37.CrossRefGoogle ScholarPubMed
Cations, M., Laver, K., Crotty, M., & Cameron, I. (2018). Rehabilitation in dementia care. Age and Ageing, 47(2), 171–174. doi: 10.1093/ageing/afx173.CrossRefGoogle ScholarPubMed
Collyer, F. M., Willis, K. F., & Lewis, S. (2017). Gatekeepers in the healthcare sector: Knowledge and Bourdieu’s concept of field. Social Science & Medicine, 186, 96–103. doi: 10.1016/j.socscimed.2017.06.004.CrossRefGoogle Scholar
Cummings, J., Mega, M., & Gray, K. (1994). The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308–2314.CrossRefGoogle ScholarPubMed
Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). Mini-Mental State. Journal of Psychiatric Research, 12, 189–198.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P., & Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. American Journal of Geriatric Psychiatry, 16(3), 229–239. doi: 10.1097/jgp.0b013e318160da72.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Winter, L., Earland, T. V., Adel Herge, E., Chernett, N. L., Piersol, C. V., & Burke, J. P. (2009). The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptability, and replication otential. The Gerontologist, 49(3), 428–439. doi: 10.1093/geront/gnp087.CrossRefGoogle Scholar
Gitlin, L. N., & Rose, K. (2016). Impact of caregiver readiness on outcomes of a nonpharmacological intervention to address behavioral symptoms in persons with dementia. International Journal of Geriatric Psychiatry, 31(9), 1056–1063. doi: 10.1002/gps.4422.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Arthur, P., Piersol, C., Hessels, V., Wu, S. S., Dai, Y., & Mann, W. C. (2018). Targeting behavioral symptoms and functional decline in dementia: A randomized clinical trial. Journal of the American Geriatrics Society, 66(2), 339–345. doi: 10.1111/jgs.15194.CrossRefGoogle ScholarPubMed
Graham, I. D., Logan, J., Harrison, M. B., Straus, S. E., Tetroe, J., Caswell, W., & Robinson, N. (2006). Lost in knowledge translation: Time for a map? Journal of Continuing Education in the Health Professions, 26, 12–24. doi: 10.1002/chp.47.CrossRefGoogle ScholarPubMed
Guideline Adaptation Committee. (2016). Clinical Practice Guidelines and Principles of Care for People with Dementia. Guideline Adaptation Committee. Retrieved from https://cdpc.sydney.edu.au/research/clinical-guidelines-for-dementia/ Google Scholar
Laver, K., Milte, R., Dyer, S., & Crotty, M.A. (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), 1308–1349. doi: 10.1177/0898264316660414.CrossRefGoogle ScholarPubMed
Lepore, M., Ferrell, A., & Wiener, J. M. (2017). Living arrangements of people with Alzheimer’s Disease and related dementias: Implications for services and supports. Retrieved from https://aspe.hhs.gov/system/files/pdf/257966/LivingArran.pdf Google Scholar
Low, L.F., Yap, M., & Brodaty, H. (2011). A systematic review of different models of home and community care services for older persons. BMC Health Services Research, 11(1), 93. doi: 10.1186/1472-6963-11-93.CrossRefGoogle ScholarPubMed
Lyketsos, C.G., Lopez, O., Jones, B., Fitzpatrick, A. L., Breitner, J., & DeKosky, S. (2002). Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: Results from the cardiovascular health study. Journal of the American Medical Association, 288(12), 1475–1483. doi: 10.1001/jama.288.12.1475.CrossRefGoogle ScholarPubMed
McCallum, J., & Rees, K. (2017). Consumer directed care in Australia: Early stage analysis and future directions. National Seniors. Retrieved from https://nationalseniors.com.au/uploads/08172617PAR_ConsumerDirectedCare_ResearchReport_Web.pdf Google Scholar
May, C. (2013). Towards a general theory of implementation. Implementation Science, 8(18). doi: 10.1186/1748-5908-8-18.CrossRefGoogle ScholarPubMed
May, C.R., Cummings, A., Girling, M., Bracher, M., Mair, F.S., May, C.M., …, Finch, T. (2018). Using Normalization Process Theory in feasibility studies and process evaluations of complex healthcare interventions: A systematic review. Implementation Science, 13(1), 80. doi: 10.1186/s13012-018-0758-1.CrossRefGoogle ScholarPubMed
Michie, S., Johnston, M., Abraham, C., Lawton, R., Parker, D., & Walker, A. (2005). Making psychological theory useful for implementing evidence based practice: A consensus approach. Quality and Safety in Health Care, 14(1), 26–33. doi: 10.1136/qshc.2004.011155.CrossRefGoogle ScholarPubMed
Miranda-Castillo, C., Woods, B., & Orrell, M. (2013). The needs of people with dementia living at home from user, caregiver and professional perspectives: A cross-sectional survey. BMC Health Services Research, 13, 43. doi: 10.1186/1472-6963-13-43.CrossRefGoogle ScholarPubMed
National Centre for Social and Economic Modelling (NATSEM). (2017). Economic cost of dementia in Australia 2016–2056. NATSEM. Retrieved from https://www.dementia.org.au/files/NATIONAL/documents/The-economic-cost-of-dementia-in-Australia-2016-to-2056.pdf Google Scholar
Novelli, M., Machado, S., Lima, G.B., Cantatore, L., Sena, B.P., Rodrigues, R.S., …, Gitlin, L.N. (2016). The Brazilian version of Tailored Activity Program (TAP-BR) to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden in Brazil: A randomized pilot study. Alzheimer Disease and Associated Disorders, 12(7), 988. doi: 10.1016/j.jalz.2016.06.2027.Google Scholar
Nyman, S.R., & Szymczynska, P. (2016). Meaningful activities for improving the wellbeing of people with dementia: Beyond mere pleasure to meeting fundamental psychological needs. Perspectives in Public Health, 136(2), 99–107. doi: 10.1177/1757913915626193.CrossRefGoogle ScholarPubMed
O’Connor, C.M., Clemson, L., Brodaty, H., Low, L.F., Jeon, Y.H., Gitlin, L.N., …, Mioshi, E. (2019). The Tailored Activity Program (TAP) to address behavioral disturbances in frontotemporal dementia: A feasibility and pilot study. Disability and Rehabilitation, 41(3), 299–310. doi: 10.1080/09638288.2017.1387614.CrossRefGoogle ScholarPubMed
Phinney, A., Chaudhury, H., & O’Connor, D. L. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging & Mental Health, 11, 384–393. doi: 10.1080/13607860601086470.CrossRefGoogle Scholar
Pope, C., Ziebland, S., & May, N. (2000). Analysing qualitative data. British Medical Journal, 320, 114–116. doi: 10.1136/bmj.320.7227.114.CrossRefGoogle ScholarPubMed
Powell, B.J., Beidas, R.S., Lewis, C.C., Aarons, G.A., McMillen, J.C., Proctor, E.K., & Mandell, D.S. (2017). Methods to improve the selection and tailoring of implementation strategies. Journal of Behavioral Health Services and Research, 44 (2), 177–194. doi: 10.1007/s11414-015-9475-6.CrossRefGoogle ScholarPubMed
Regier, N., & Gitlin, L.N. (2017). Engagement in meaningful activity and well-being, cognition, and mortality in persons with dementia. Innovation in Aging, 1(Suppl 1), 979–980. doi: 10.1093/geroni/igx004.3537.Google Scholar
Sandelowki, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340. doi: 10.1002/1098-240X(200008)23:4<334:AID-NUR9>3.0.CO;2-G.3.0.CO;2-G>CrossRefGoogle Scholar
Sekhon, M., Cartwright, M., & Francis, J.J. (2017). Acceptability of healthcare interventions: An overview of reviews and development of a theoretical framework. BMC Health Services Research, 17(1), 88. doi: 10.1186/s12913-017-2031-8.CrossRefGoogle ScholarPubMed
Stephan, A., Bieber, A., Hopper, L., Joyce, R., Irving, K., Zanetti, O., …, On behalf of the Actifcare Consortium. (2018). Barriers and facilitators to the access to and use of formal dementia care: Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics, 18(1), 131. doi: 10.1186/s12877-018-0816-1.CrossRefGoogle ScholarPubMed
Stiggelbout, A.M., Van der Weijden, T., De Wit, M.P., Frosch, D., Légaré, F., Montori, V., …, Elwyn, G. (2012). Shared decision making: Really putting patients at the centre of healthcare. British Medical Journal, 344, e256. doi: 10.1136/bmj.e256.CrossRefGoogle ScholarPubMed