AAD  Vol.7 No.2 , June 2018
Caregiving in Alzheimer’s Disease: Research Designs & Considerations
Abstract: Alzheimer’s disease and related dementias have made a considerable impact on society, and can take a significant toll on familial caregivers. Recent successful caregiving interventions suggest a promising future, though informed research design, a priori, is paramount in ensuring quality results that the Government and public may use to make informed policy and personal healthcare decisions. Research designs including basic science, randomized controlled trials (RCTs), qualitative, and quasi-experimental designs serve as the primary basis for discussion with literary examples and caveats.
Cite this paper: Arthur, P. (2018) Caregiving in Alzheimer’s Disease: Research Designs & Considerations. Advances in Alzheimer's Disease, 7, 36-49. doi: 10.4236/aad.2018.72003.

[1]   Alzheimers Association (2017) Alzheimer’s Disease Facts and Figures.

[2]   Alzheimers Association: Alzheimer’s Breakthrough Act.

[3]   Schulz, R. (2000) Handbook on Dementia Caregiving: Evidence-Based Interventions for Family Caregivers. Springer, New York.

[4]   Schoenmakers, B., Buntinx, F. and Delepeleire, J. (2010) Factors Determining the Impact of Care-Giving on Caregivers of Elderly Patients with Dementia. A Systematic literature Review. Maturitas, 66, 191-200.

[5]   Schulz, R. and Martire, L.M. (2004) Family Caregiving of Persons with Dementia: Prevalence, Health Effects, and Support Strategies. The American Journal of Geriatric Psychiatry, 12, 240-249.

[6]   Spijker, A., Vernooij-Dassen, M., Vasse, E., Adang, E., Wollersheim, H., Grol, R. and Verhey, F. (2008) Effectiveness of Nonpharmacological Interventions in Delaying the Institutionalization of Patients with Dementia: A Meta-Analysis. Journal of the American Geriatrics Society, 56, 1116-1128.

[7]   Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M. and Stevens, A. (2002) Dementia Caregiver Intervention Research: In Search of Clinical Significance. The Gerontologist, 42, 589-602.

[8]   Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N. and Porter, M. (2009) A Broader View of Family Caregiving: Effects of Caregiving and Caregiver Conditions on Depressive Symptoms, Health, Work, and Social Isolation. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 64B, 788-798.

[9]   Gitlin, L.N., Kales, H.C. and Lyketsos, C.G. (2012) Nonpharmacologic Management of Behavioral Symptoms in Dementia. JAMA, 308, 2020-2029.

[10]   Coyne, A.C., Reichman, W.E. and Berbig, L.J. (1993) The Relationship between Dementia and Elder Abuse. The American Journal of Psychiatry, 150, 643-646.

[11]   Grimshaw, J., Campbell, M., Eccles, M. and Steen, N. (2000) Experimental and Quasi-Experimental Designs for Evaluating Guideline Implementation Strategies. Family Practice, 17, S11-S16.

[12]   Machin, D. and Fayers, P.M. (2010) Randomized Clinical Trials: Design, Practice and Reporting. Wiley-Blackwell, West Sussex.

[13]   Shaw, W.S., Patterson, T.L., Ziegler, M.G., Dimsdale, J.E., Semple, S.J. and Grant, I. (1999) Accelerated Risk of Hypertensive Blood Pressure Recordings among Alzheimer Caregivers. Journal of Psychosomatic Research, 46, 215-227.

[14]   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, 177-185.

[15]   González-Salvador, M.T., Arango, C., Lyketsos, C.G. and Barba, A.C. (1999) The Stress and Psychological Morbidity of the Alzheimer Patient Caregiver. International Journal of Geriatric Psychiatry, 14, 701-710.

[16]   Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K. and Covinsky, K. E. (2002) Patient and Caregiver Characteristics and Nursing Home Placement in Patients with Dementia. JAMA, 287, 2090-2097.

[17]   Gitlin, L.N., Winter, L., Dennis, M.P. Hodgson, N. and Hauck, W.W. (2010) Targeting and Managing Behavioral Symptoms in Individuals with Dementia: A Randomized Trial of a Nonpharmacological Intervention. Journal of the American Geriatrics Society, 58, 1465-1474.

[18]   Rogers, S.L., Farlow, M.R., Doody, R.S., Mohs, R. and Friedhoff, L.T. (1998) A 24-Week, Double-Blind, Placebo-Controlled Trial of Donepezil in Patients with Alzheimer’s Disease. Neurology, 50, 136-145.

[19]   Gitlin, L.N., Mann, W.C., Vogel, W.B. and Arthur, P.B. (2013) A Non-Pharmacologic Approach to Address Challenging Behaviors of Veterans with Dementia: Description of the Tailored Activity Program-VA Randomized Trial. BMC Geriatrics, 13, 96.

[20]   Schwartz, C.E., Chesney, M.A., Irvine, M.J. and Keefe, F.J. (1997) The Control Group Dilemma in Clinical Research: Applications for Psychosocial and Behavioral Medicine Trials. Psychosomatic Medicine, 59, 362-371.

[21]   Dröes, R.M., Meiland, F.J.M., Schmitz, M.J. and Van Tilburg, W. (2006) Effect of the Meeting Centres Support Program on Informal Carers of People with Dementia: Results from a Multi-Centre Study. Aging and Mental Health, 10, 112-124.

[22]   McGinnis, K.A., Schulz, R., Stone, R.A., Klinger, J. and Mercurio, R. (2006) Concordance of Race or Ethnicity of Interventionists and Caregivers of Dementia Patients: Relationship to Attrition and Treatment Outcomes in the REACH Study. The Gerontologist, 46, 449-455.

[23]   Moher, D., Schulz, K.F. and Altman, D.G. (2001) The CONSORT Statement: Revised Recommendations for Improving the Quality of Reports of Parallel-Group Randomised Trials. The Lancet, 357, 1191-1194.

[24]   Kraemer, H.C., Mintz, J., Noda, A., Tinklenberg, J. and Yesavage, J.A. (2006) Caution regarding the Use of Pilot Studies to Guide Power Calculations for Study Proposals. Archives of General Psychiatry, 63, 484-489.

[25]   Williams, H.A. and Jabor, M.K. (2010) Reporting and Interpreting Effect Size in Quantitative Agricultural Education Research. Journal of Agricultural Education, 52, 132-142.

[26]   Cohen, J. (1992) A Power Primer. Psychological Bulletin, 112, 155-159.

[27]   Smith, G.D. and Ebrahim, S. (2002) Data Dredging, Bias, or Confounding: They Can All Get You into the BMJ and the Friday Papers. BMJ: British Medical Journal, 325, 1437.

[28]   Barbour, R. (2008) Introducing Qualitative Research: A Student Guide to the Craft of Doing Qualitative Research. SAGE Publications Inc., Thousand Oaks.

[29]   Grilli, R. and Lomas, J. (1994) Evaluating the Message: The Relationship between Compliance Rate and the Subject of a Practice Guideline. Medical Care, 32, 202-213.

[30]   Hepburn, K.W., Lewis, M., Sherman, C.W. and Tornatore, J. (2003) The Savvy Caregiver Program: Developing and Testing a Transportable Dementia Family Caregiver Training Program. The Gerontologist, 43, 908-915.

[31]   QSR International Pty Ltd. (2012) NVivo Qualitative Data Analysis Software. Version 10.

[32]   Ulin, P.R., Robinson, E.T. and Tolley E.E. (2005) Qualitative Methods in Public Health: A Field Guide for Applied Research. Jossey-Bass, San Francisco.

[33]   Loehnert, S. (2010) About Statistical Analysis of Qualitative Survey Data. International Journal of Quality, Statistics, and Reliability, 2010, Article ID: 849043.

[34]   Shaji, K., Smitha, K., Lal, K. and Prince, M. (2003) Caregivers of People with Alzheimer’s Disease: A Qualitative Study from the Indian 10/66 Dementia Research Network. International Journal of Psychiatry, 18, 1-6.

[35]   Woods, R.T., Wills, W., Higginson, I.J., Hobbins, J. and Whitby, M. (2003) Support in the Community for People with Dementia and Their Carers: A Comparative Outcome Study of Specialist Mental Health Service Interventions. International Journal of Geriatric Psychiatry, 18, 298-307.