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Use of the Tailored Activities Program to reduce neuropsychiatric behaviors in dementia: an Australian protocol for a randomized trial to evaluate its effectiveness

  • C. M. O'Connor (a1), L. Clemson (a1), H. Brodaty (a2), Y. H. Jeon (a3), E. Mioshi (a4) (a5) and L. N. Gitlin (a6)...



Behavioral and psychological symptoms of dementia (BPSD) are often considered to be the greatest challenge in dementia care, leading to increased healthcare costs, caregiver burden, and placement into care facilities. With potential for pharmacological intervention to exacerbate behaviors or even lead to mortality, the development and rigorous testing of non-pharmacological interventions is vital. A pilot of the Tailored Activities Program (TAP) for reducing problem behaviors in people with dementia was conducted in the United States with promising results. This randomized trial will investigate the effectiveness of TAP for reducing the burden of BPSD on persons with dementia and family caregivers within an Australian population. This trial will also examine the cost-effectiveness and willingness to pay for TAP compared with a control group.


This randomized trial aims to recruit 180 participant dyads of a person with dementia and their caregivers. Participants will have a diagnosis of dementia, exhibit behaviors as scored by the Neuropsychiatric Inventory, and the caregiver must have at least 7 h per week contact. Participants will be randomly allocated to intervention (TAP) or control (phone-based education sessions) groups, both provided by a trained occupational therapist. Primary outcome measure will be the revised Neuropsychiatric Inventory – Clinician rating scale (NPI-C) to measure BPSD exhibited by the person with dementia.


This trial investigates the effectiveness and cost-effectiveness of TAP within an Australian population. Results will address a significant gap in the current Australian community-support base for people living with dementia and their caregivers.


Corresponding author

Correspondence should be addressed to: Professor Lindy Clemson, Faculty of Health Sciences, The University of Sydney, Lidcombe, NSW 1825, Australia. Phone: +61-2-9351-9372; Fax: +61-2-9351-9672. Email:


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Australian Institute of Health and Welfare. (2012). Dementia in Australia. Cat. No. AGE 70. Canberra, Australia: AIHW.
Ballard, C. G., Waite, J. and Birks, J. (2006). Atypical antipsychotics for aggression and psychosis in Alzheimer's disease. Cochrane Database of Systematic Reviews, 1, CD003476.
Beck, A. T. and Steer, R. A. (1990). Beck Anxiety Inventory: Manual. San Antonio, TX: Psychological Corporation.
Beck, A. T., Steer, R. A. and Brown, G. K. (1996). Beck Depression Inventory Manual. San Antonio, TX: Psychological Corporation.
Belle, S. H. et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Annals of Internal Medicine, 145, 727738.
Brazier, J., Usherwood, T., Harper, R. and Thomas, K. (1998). Deriving a preference-based single index from the UK SF-36 Health Survey. Journal of Clinical Epidemiology, 51, 11151128.
Brodaty, H. and Arasaratnam, C. (2012). Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 169, 946953.
Brodaty, H. and Burns, K. (2012). Nonpharmacologcial management of apathy in dementia: a systematic review. American Journal of Geriatric Psychiatry, 20, 549564.
Brodaty, H. and Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11, 217228.
Brooker, D. J., Woolley, R. J. and Lee, D. (2007). Enriching opportunities for people living with dementia in nursing homes: an evaluation of a multi-level activity-based model of care. Aging & Mental Health, 11, 361370.
Brooks, R. and EuroQol Group (1996). EuroQol: the current state of play. Health Policy, 37, 5372.
Callahan, C. M. et al. (2012). Transitions in care for older adults with and without dementia. Journal of the American Geriatrics Society, 60, 813820.
Campbell, N. et al. (2008). Impact of cholinesterase inhibitors on behavioral and psychological symptoms of Alzheimer's disease: a meta-analysis. Clinical Interventions in Aging, 3, 719728.
Cedarbaum, J. M. et al. (2013). Rationale for use of the clinical dementia rating sum of boxes as a primary outcome measure for Alzheimer's disease clinical trials. Alzheimer's & Dementia, 9, S45–S55. doi:10.1016/j.jalz.2011.11.002.
Cerejeira, J., Lagarto, L. and Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 121.
Chenoweth, L. et al. (2009). Caring for Aged Dementia Care REsident Study (CADRES), a cluster-randomised trial of person-centred-care, dementia care mapping and usual care in dementia. Lancet Neurology, 8, 317325.
Chiu, M. J., Chen, T. F., Yip, P. K., Hua, M. S. and Tang, L. Y. (2006). Behavioral and psychologic symptoms in different types of dementia. Journal of the Formosan Medical Association, 105, 556562.
Cohen-Mansfield, J. (2001). Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. American Journal of Geriatric Psychiatry, 9, 361381.
Crawford, J. R. and Henry, J. D. (2003). The Depression Anxiety Stress Scales (DASS): normative data and latent structure in a large non-clinical sample. British Journal of Clinical Psychology, 42, 111131.
Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A. and Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 23082314. doi:10.1212/WNL.44.12.2308.
Damian, A. M. et al. (2011). The Montreal Cognitive Assessment and the Mini-Mental State Examination as screening instruments for cognitive impairment: item analyses and threshold scores. Dementia and Geriatric Cognitive Disorders, 31, 126131. doi:10.1159/000323867.
de Medeiros, K. et al. (2010). The neuropsychiatric inventory-clinician rating scale (NPI-C): reliability and validity of a revised assessment of neuropsychiatric symptoms in dementia. International Psychogeriatrics, 22, 984994. doi:10.1017/S1041610210000876.
De Vugt, M. E., Stevens, F., Aalten, P., Lousberg, R., Jaspers, N. and Verhey, F. R. J. (2005). A prospective study of the effects of behavioural symptoms on the institutionalization of patients with dementia. International Psychogeriatrics, 17, 577589.
Diener, E., Emmons, R. A., Larson, R. J. and Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 7175. doi:10.1207/s15327752jpa4901_13.
Earhart, C. A. (2006). Allen Diagnostic Modules: Manual. Colchester, CT: S&S Worldwide.
Feeney Mahoney, D., Jones, R. N., Coon, D. W., Mendelsohn, A. B., Gitlin, L. N. and Ory, M. (2003). The caregiver vigilance scale: application and validation in the Resources for Anhancing Alzheimer's Caregiver Health (REACH) project. American Journal of Alzheimer's Disease and Other Dementias, 18, 3948. doi:10.1177/153331750301800110.
Feeny, C. M. et al. (2004). The stability of utility scores: test-retest reliability and the interpretation of utility scores in elective total hip arthroplasty. Quality of Life Research, 13, 1522.
Feeny, D., Furlong, W., Boyle, M. and Torrance, G. W. (1995). Multi-attribute health status classification systems: health utilities index. Pharmacoeconomics, 7, 490502.
Feldman, H. et al. (2001). A 24-week, randomized, double-blind study of donepezil in moderate to severe Alzheimer's disease. Neurology, 57, 613620.
Fisk, J. D., Brown, M. G., Sketris, I. S., Metz, L. M., Murray, T. J. and Stadnyk, K. J. (2005). A comparison of health utility measures for the evaluation of multiple sclerosis treatments. Journal of Neurology, Neurosurgery and Psychiatry, 76, 5863. doi:10.1136/jnnp.2003.017897.
Folstein, M. F., Folstein, S. E. and Mchugh, P. R. (1975). Mini-Mental State: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.
Gelinas, I., Gauthier, L., Mcintyre, M. and Gauthier, S. (1999). Development of a functional measure for persons with Alzheimer's disease: the disability assessment for dementia. American Journal of Occupational Therapy, 53, 471481.
Gitlin, L. N. (2012). Good news for dementia care: caregiver interventions reduce behavioral symptoms in people with dementia and family distress. American Journal of Psychiatry, 169, 894897. doi:10.1176/appi.ajp.2012.12060774.
Gitlin, L. N. et al. (2005). Caregiver appraisals of functional dependence in individuals with dementia and associated caregiver upset: psychometric properties of a new scale and response patterns by caregiver and care recipient characteristics. Journal of Aging and Health, 17, 148171. doi:10.1177/0898264304274184.
Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P. and Huack, 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, 229239.
Gitlin, L. N. et al. (2009). The tailored activity program to reduce behavioral symptoms in individuals with dementia: feasibility, acceptability, and replication potential. Gerontologist, 49, 428439.
Gitlin, L. N., Hodgson, N., Jutkowitz, E. and Pizzi, L. (2010). The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. American Journal of Geriatric Psychiatry, 18, 510519.
Gloster, A. T. et al. (2008). Psychometric properties of the Depression Anxiety and Stress Scale-21 in older primary care patients. Journal of Affective Disorders, 110, 248259.
Górska, S. et al. (2013). Service-related needs of older people with dementia: perspectives of service users and their unpaid caregivers. International Psychogeriatrics, 25, 11071114. doi:10.1017/S1041610213000343.
Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L. and Olde-Rikkert, M. G. M. (2006). Community-based occupational therapy for patients with dementia and their care givers: randomised controlled trial. British Medical Journal, 333, 1196. doi:10.1136/bmj.39001.688843.BE.
Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L. and Olde-Rikkert, M. G. M. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: a randomized controlled trial. Journal of Gerontology: Medical Sciences, 62A, 10021009.
Hébert, R., Bravo, G. and Girouard, D. (1993). Fidélité de la traduction française de trois instruments d'évaluation des aidants naturels de malades déments. Canadian Journal on Aging, 12, 324337.
Jorm, A. F. and Jacomb, P. A. (1989). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): sociodemographic correlates, reliability, validity and some norms. Psychological Medicine, 19, 10151022. doi:10.1017/S0033291700005742.
Kar, N. (2009). Behavioral and psychological symptoms of dementia and their management. Indian Journal of Psychiatry, 51, S77–S86.
Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 1322. doi:10.1080/13607869757344.
Knopman, D. S. et al. (2008). Development of methodology for conducting clinical trials in frontotemporal lobar degeneration. Brain, 131, 29572968. doi:10.1093/brain/awn234.
Kolanowski, A., Litaker, M. and Buettner, L. (2005). Efficacy of theory-based activites for behavioral symptoms of dementia. Nursing Research, 54, 219228.
Kolanowski, A., Litaker, M., Buettner, L., Moeller, J. and Costa, P. T. (2011). A randomized clinical trial of theory-based activities for the behavioural symptoms of dementia in nursing home residents. Journal of the American Geriatrics Society, 59, 10321041.
Kunz, S. (2010). Psychometric properties of the EQ-5D in a study of people with mild to moderate dementia. Quality of Life Research, 19, 425434. doi:10.1007/s11136-010-9600-1.
Lovibond, P. F. and Lovibond, S. H. (1995). The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour Research and Therapy, 33, 335343.
Mahoney, F. I. and Barthel, D. W. (1965). Functional evaluation: the Barthel Index. Maryland State Medical Journal, 14, 6165.
Marshall, M. J. and Hutchinson, S. A. (2001). A critique of research on the use of activities with persons with Alzheimer's disease: a systematic literature review. Journal of Advanced Nursing, 35, 488496.
Mioshi, E., Hsieh, S., Savage, S., Hornberger, M. and Hodges, J. R. (2010). Clinical staging and disease progression in frontotemporal dementia. Neurology, 74, 15911597. doi:10.1212/WNL.0b013e3181e04070.
Morris, J. C. (1993). The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology, 43, 24122414.
Nasreddine, Z. S. et al. (2005). The Montreal Cocnitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53, 695699.
Nord, E. (1991). EuroQol: health-related quality of life measurement. Valuations of health states by the general public in Norway. Health Policy, 18, 2536. doi:10.1016/0168-8510(91)90141-J.
O'Brien, B. and Viramontes, J. L. (1994). Willingness to pay: a valid and reliable measure of health state preference? Medical Decision Making, 14, 289297. doi:10.1177/0272989X9401400311.
Oremus, M., Perrault, A., Demers, L. and Wolfson, C. (2000). Review of outcome measurement instruments in Alzheimer's disease drug trials: psychometric properties of global scales. Journal of Geriatric Psychiatry and Neurology, 13, 197205. doi:10.1177/089198870001300404.
Oremus, M. and Tarride, J. E. (2008). A systematic review of the use of contingent valuation in Alzheimer's disesase research. Dementia, 7, 461480. doi:10.1177/1471301208096630.
Pavot, W. and Diener, E. (1993). Review of the satisfaction with life scale. Psychological Assessment, 5, 164172.
Pavot, W., Diener, E., Colvin, C. R. and Sandvik, E. (1991). Further validation of the satisfaction with life scale: evidence for the cross-method convergence of well-being measures. Journal of Personality Assessment, 57, 149161.
Piguet, O., Hornberger, M., Mioshi, E. and Hodges, J. R. (2011). Behavioural-variant frontotemporal dementia: diagnosis, clinical staging, and management. Lancet Neurology, 10, 162172.
Podsiadlo, D. and Richardson, S. (1991). The timed “up & go”: a test of basic functional mobility for frail elderly persons. Journal of the American Geriatrics Society, 39, 142148.
Raskovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 24562477.
Rees, G. (2009). Dementia: Facing the Epidemic. A Vision for a World Class Dementia Care System. Sydney, Australia: Alzheimer's Australia.
Reisberg, B., Ferris, S. H., De Leon, M. J. and Crook, T. (1982). The global deterioration scale (GDS) for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 11361139.
Schulz, R., Martire, L. M. and Klinger, J. N. (2005). Evidence-based caregiver interventions in geriatric psychiatry. Psychiatric Clinics of North America, 28, 10071038. doi:10.1016/j.psc.2005.09.003.
Smith, T., Gildeh, N. and Holmes, C. (2007). The Montreal Cognitive Assessment: validity and utility in a memory clinic setting. Canadian Journal of Psychiatry, 52, 329332.
Sorensen, S., Pinquart, M. and Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356372.
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S. and Vitaliano, P. P. (1992). Assessment of behavioral problems in dementia: The revised memory and behavior problems checklist. Psychology and Aging, 7, 622631.
von Neumann, J. and Morgenstern, O. (1953). Theory of Games and Economic Behavior. Princeton, NJ: Princeton University Press.
Watson, D., Clark, L. A. and Tellegen, A. (1998). Development and validation of brief measures of positive and negative affect: the PANAS scales. Journal of Personality and Social Psychology, 54, 10631070.
Wimo, A. and Nordberg, G. (2007). Validity and reliability of assessments of time comparisons of direct observations amd estimates of time by the use of the resource utilization in dementia (RUD) instrument. Archives of Gerontology and Geriatrics, 44, 7181.
Wimo, A., Wetterholm, A. L., Mastey, V. and Winblad, B. (1998). Evaluation of the resource utilization and caregiver time in anti-dementia drug trials – a quantitative battery. In Wimo, A., Jonsson, B., Karlsson, G. and Winblad, B. (eds.), The Health Economics of Dementia. (pp. 465–499). London: John Wiley and sons.
Wimo, A., Jonsson, L. and Zbrozek, A. (2010). The Resource Utilization in Dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. Journal of Nutrition, Health & Aging, 14, 685690.
World Health Organization. (2003). Methods for generalized cost-effectiveness analysis. In Edejer, T. T. T., Baltussen, R., Adam, T., Hutubessy, R., Acharya, A., Evans, D. B. and Murray, C. J. L. (eds.), Making Choices in Health: WHO Guide to Cost-Effectiveness Analysis. (pp. 3–97). Geneva, Switzerland: World Health Organisation.
Zarit, S. H. and Leitsch, S. A. (2001). Developing and evaluating community-based intervention programs for Alzheimer's patients and their caregivers. Aging & Mental Health, 5, 8498. doi:10.1080/13607860120044864.
Zarit, S. H., Reever, K. E. and Back-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20, 649655. doi:10.1093/geront/20.6.649.



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