Supporting caregivers of veterans with Alzheimer's disease and traumatic brain injury: study protocol for a randomized controlled trial

Jennifer L Carnahan, Katherine S Judge, Joanne K Daggy, James E Slaven, Nicki Coleman, Emily L Fortier, Christopher Suelzer, Nicole R Fowler, Jennifer L Carnahan, Katherine S Judge, Joanne K Daggy, James E Slaven, Nicki Coleman, Emily L Fortier, Christopher Suelzer, Nicole R Fowler

Abstract

Background: Patients with Alzheimer's disease and related dementias (ADRD) and traumatic brain injury (TBI) and their caregivers require cognitive and behavioral symptom management, interdisciplinary care, support for caregivers, and seamless care coordination between providers. Caring for someone with ADRD or TBI is associated with higher rates of psychological morbidity and burden, social isolation, financial hardship, and deterioration of physical health. Tremendous need exists for primary care-based interventions that concurrently address the care needs of dyads and aim to improve care and outcomes for both individuals with ADRD and TBI and their family caregivers.

Methods: The Aging Brain Care Acquiring New Skills While Enhancing Remaining Strengths (ABC ANSWERS) study is a randomized controlled trial that tests the effectiveness of an intervention based on two evidence-based programs that have been developed for and previously tested in populations with ADRD, TBI, stroke, and late-life depression and/or who have survived an intensive care unit stay. This study includes 200 dyads comprised of a veteran with a diagnosis of ADRD or TBI and the veteran's primary informal caregiver. Dyads are randomized to receive the ABC ANSWERS intervention or routine Veterans Health Administration (VHA) primary care with a standardized educational and resource information packet. Data collection occurs at baseline and three follow-up time points (3 months, 6 months, and 12 months). The primary outcome is caregiver quality of life (QoL). A secondary measure for the caregiver is caregiver burden. Secondary measures for both the veteran and caregiver include symptoms of depression and anxiety.

Discussion: The ABC ANSWERS intervention integrates common features of an evidence-based collaborative care model for brain health while concurrently attending to the implementation barriers of delivering care and skills to dyads. We hypothesize that caregivers in dyads randomized to the ABC ANSWERS program will experience higher levels of QoL and lower levels of depression, anxiety, dyadic strain, and caregiver burden at 12 months than those receiving usual VHA primary care.

Trial registration: ClinicalTrials.gov, NCT03397667. Registered on 12 January 2018.

Keywords: Alzheimer’s disease; Caregivers; Collaborative care; Dementia; Quality of life; Traumatic brain injury; Veterans.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Aging Brain Care Acquiring New Skills While Enhancing Remaining Strengths study design

References

    1. Sibener L, Zaganjor I, Snyder HM, Bain LJ, Egge R, Carrillo MC. Alzheimer’s disease prevalence, costs, and prevention for military personnel and veterans. Alzheimers Dement. 2014;10(3 Suppl):S105–S110. doi: 10.1016/j.jalz.2014.04.011.
    1. Frame A, LaMantia M, Reddy Bynagari BB, Dexter P, Boustani M. Development and implementation of an electronic decision support to manage the health of a high-risk population: the enhanced Electronic Medical Record Aging Brain Care Software (eMR-ABC) EGEMS (Wash DC) 2013;1(1):1009.
    1. Van Den Heuvel C, Thornton E, Vink R. Traumatic brain injury and Alzheimer’s disease: a review. Prog Brain Res. 2007;161:303–316. doi: 10.1016/S0079-6123(06)61021-2.
    1. Callahan CM, Boustani MA, Weiner M, Beck RA, Livin LR, Kellams JJ, et al. Implementing dementia care models in primary care settings: the Aging Brain Care Medical Home. Aging Ment Health. 2011;15(1):5–12. doi: 10.1080/13607861003801052.
    1. Shively S, Scher AI, Perl DP, Diaz-Arrastia R. Dementia resulting from traumatic brain injury: what is the pathology? Arch Neurol. 2012;69(10):1245–1251. doi: 10.1001/archneurol.2011.3747.
    1. Gilbert M, Snyder C, Corcoran C, Norton MC, Lyketsos CG, Tschanz JT. The association of traumatic brain injury with rate of progression of cognitive and functional impairment in a population-based cohort of Alzheimer’s disease: the Cache County Dementia Progression Study. Int Psychogeriatr. 2014;26(10):1593–1601. doi: 10.1017/S1041610214000842.
    1. Zhao QF, Tan L, Wang HF, Jiang T, Tan MS, Tan L, et al. The prevalence of neuropsychiatric symptoms in Alzheimer’s disease: systematic review and meta-analysis. J Affect Disord. 2016;190:264–271. doi: 10.1016/j.jad.2015.09.069.
    1. Stéfan A, Mathé JF, SOFMER Group What are the disruptive symptoms of behavioral disorders after traumatic brain injury? A systematic review leading to recommendations for good practices. Ann Phys Rehabil Med. 2016;59(1):5–17. doi: 10.1016/j.rehab.2015.11.002.
    1. Alzheimer’s Association . Alzheimer’s disease facts and figures. Chicago: Alzheimer’s Association; 2018.
    1. Guerriero Austrom M, Damush TM, Hartwell CW, Perkins T, Unverzagt F, Boustani M, et al. Development and implementation of nonpharmacologic protocols for the management of patients with Alzheimer’s disease and their families in a multiracial primary care setting. Gerontologist. 2004;44(4):548–553. doi: 10.1093/geront/44.4.548.
    1. Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM. Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the Maximizing Independence at Home Study. J Am Geriatr Soc. 2013;61(12):2087–2095. doi: 10.1111/jgs.12549.
    1. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11(2):217–218.
    1. Ory MG, Hoffman RR, 3rd, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39(2):177–185. doi: 10.1093/geront/39.2.177.
    1. Eapen BC, Allred DB, O’Rourke J, Cifu DX. Rehabilitation of moderate-to-severe traumatic brain injury. Semin Neurol. 2015;35(1):e1–e3. doi: 10.1055/s-0035-1549094.
    1. Gates NJ, Sachdev P. Is cognitive training an effective treatment for preclinical and early Alzheimer’s disease? J Alzheimers Dis. 2014;42(Suppl 4):S551–S559. doi: 10.3233/JAD-141302.
    1. Cooper DB, Bunner AE, Kennedy JE, Balldin V, Tate DF, Eapen BC, et al. Treatment of persistent post-concussive symptoms after mild traumatic brain injury: a systematic review of cognitive rehabilitation and behavioral health interventions in military service members and veterans. Brain Imaging Behav. 2015;9(3):403–420. doi: 10.1007/s11682-015-9440-2.
    1. Brennan PF, Moore SM, Smyth KA. The effects of a special computer network on caregivers of persons with Alzheimer’s disease. Nurs Res. 1995;44(3):166–172. doi: 10.1097/00006199-199505000-00007.
    1. Brodaty H, Gresham M. Effect of a training programme to reduce stress in carers of patients with dementia. BMJ. 1989;299(6712):1375–1379. doi: 10.1136/bmj.299.6712.1375.
    1. Mittelman MS, Ferris SH, Shulman E, Steinberg G, Levin B. A family intervention to delay nursing home placement of patients with Alzheimer disease: a randomized controlled trial. JAMA. 1996;276(21):1725–1731. doi: 10.1001/jama.1996.03540210033030.
    1. Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51(5):657–664. doi: 10.1034/j.1600-0579.2003.00210.x.
    1. Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, et al. Negative caregiving effects among caregivers of veterans with dementia. Am J Geriatr Psychiatry. 2012;20(3):239–247. doi: 10.1097/JGP.0b013e31824108ca.
    1. Buckwalter KC, Gerdner L, Kohout F, Hall GR, Kelly A, Richards B, et al. A nursing intervention to decrease depression in family caregivers of persons with dementia. Arch Psychiatr Nurs. 1999;13(2):80–88. doi: 10.1016/S0883-9417(99)80024-7.
    1. Martire LM, Hall M. Dementia caregiving: recent research on negative health effects and the efficacy of caregiver interventions. CNS Spectr. 2002;7(11):791–796. doi: 10.1017/S1092852900024305.
    1. Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A, Zhang S. Long-term care placement of dementia patients and caregiver health and well-being. JAMA. 2004;292(8):961–967. doi: 10.1001/jama.292.8.961.
    1. Boustani M, Campbell N, Munger S, Maidment I, Fox C. Impact of anticholinergics on the aging brain: a review and practical application. Aging Health. 2008;4(3):311–320. doi: 10.2217/1745509X.4.3.311.
    1. Boustani MA, Sachs GA, Alder CA, Munger S, Schubert CC, Guerriero Austrom M, et al. Implementing innovative models of dementia care: the Healthy Aging Brain Center. Aging Ment Health. 2011;15(1):13–22. doi: 10.1080/13607863.2010.496445.
    1. Callahan CM, Boustani MA, Unverzagt FW, Austrom MG, Damush TM, Perkins AJ, et al. Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial. JAMA. 2006;295(18):2148–2157. doi: 10.1001/jama.295.18.2148.
    1. French DD, LaMantia MA, Livin LR, Herceg D, Alder CA, Boustani MA. Healthy Aging Brain Center improved care coordination and produced net savings. Health Aff (Millwood) 2014;33(4):613–618. doi: 10.1377/hlthaff.2013.1221.
    1. Khan BA, Lasiter S, Boustani MA. CE: critical care recovery center: an innovative collaborative care model for ICU survivors. Am J Nurs. 2015;115(3):24–31. doi: 10.1097/01.NAJ.0000461807.42226.3e.
    1. LaMantia MA, Alder CA, Callahan CM, Gao S, French DD, Austrom MG, et al. The Aging Brain Care Medical Home: preliminary data. J Am Geriatr Soc. 2015;63(6):1209–1213. doi: 10.1111/jgs.13447.
    1. Monahan PO, Boustani MA, Alder C, Galvin JE, Perkins AJ, Healey P, et al. Practical clinical tool to monitor dementia symptoms: the HABC-Monitor. Clin Interv Aging. 2012;7:143–157. doi: 10.2147/CIA.S30663.
    1. Unützer J, Katon W, Callahan CM, Williams JW, Jr, Hunkeler E, Harpole L, et al. Collaborative care management of late-life depression in the primary care setting: a randomized controlled trial. JAMA. 2002;288(22):2836–2845. doi: 10.1001/jama.288.22.2836.
    1. Judge KS, Yarry SJ, Looman WJ, Bass DM. Improved strain and psychosocial outcomes for caregivers of individuals with dementia: findings from Project ANSWERS. Gerontologist. 2013;53(2):280–292. doi: 10.1093/geront/gns076.
    1. Judge KS, Yarry SJ, Orsulic-Jeras S. Acceptability and feasibility results of a strength-based skills training program for dementia caregiving dyads. Gerontologist. 2010;50(3):408–417. doi: 10.1093/geront/gnp138.
    1. Odenheimer G, Borson S, Sanders AE, Swain-Eng RJ, Kyomen HH, Tierney S, et al. Quality improvement in neurology: dementia management quality measures. Neurology. 2013;81(17):1545–1549. doi: 10.1212/WNL.0b013e3182a956bf.
    1. Belanger HG, Uomoto JM, Vanderploeg RD. The Veterans Health Administration’s (VHA’s) Polytrauma System of Care for mild traumatic brain injury: costs, benefits, and controversies. J Head Trauma Rehabil. 2009;24(1):4–13. doi: 10.1097/HTR.0b013e3181957032.
    1. Monahan PO, Alder CA, Khan BA, Stump T, Boustani MA. The Healthy Aging Brain Care (HABC) Monitor: validation of the patient self-report version of the clinical tool designed to measure and monitor cognitive, functional, and psychological health. Clin Interv Aging. 2014;9:2123–2132. doi: 10.2147/CIA.S64140.
    1. Gitlin LN, Belle SH, Burgio LD, Czaja SJ, Mahoney D, Gallagher-Thompson D, et al. Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychol Aging. 2003;18(3):361–374. doi: 10.1037/0882-7974.18.3.361.
    1. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Mental Health Aging. 1999;5(1):21–32.
    1. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64(3):510–519. doi: 10.1097/00006842-200205000-00016.
    1. Thorgrimsen L, Selwood A, Spector A, Royan L, de Madariaga LM, Woods RT, et al. Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer’s Disease (QoL-AD) scale. Alzheimer Dis Assoc Disord. 2003;17(4):201–208. doi: 10.1097/00002093-200310000-00002.
    1. Wolak-Thierry A, Novella JL, Barbe C, Morrone I, Mahmoudi R, Jolly D. Comparison of QoL-AD and DQoL in elderly with Alzheimer’s disease. Aging Ment Health. 2015;19(3):274–278. doi: 10.1080/13607863.2014.927822.
    1. Bakas T, Austin JK, Jessup SL, Williams LS, Oberst MT. Time and difficulty of tasks provided by family caregivers of stroke survivors. J Neurosci Nurs. 2004;36(2):95–106. doi: 10.1097/01376517-200404000-00007.
    1. Garand L, Dew MA, Eazor LR, DeKosky ST, Reynolds CF., 3rd Caregiving burden and psychiatric morbidity in spouses of persons with mild cognitive impairment. Int J Geriatr Psychiatry. 2005;20(6):512–522. doi: 10.1002/gps.1318.
    1. Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58(2):P112–P128. doi: 10.1093/geronb/58.2.P112.
    1. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12(3):240–249. doi: 10.1097/00019442-200405000-00002.
    1. Marsh NV, Kersel DA, Havill JA, Sleigh JW. Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol. 2002;24(4):434–447. doi: 10.1076/jcen.24.4.434.1030.
    1. Carey PJ, Oberst MT, McCubbin MA, Hughes SH. Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncol Nurs Forum. 1991;18(8):1341–1348.
    1. Oberst MT. Going beyond clinical trials. Res Nurs Health. 1990;13(1):3–4.
    1. Oberst MT, Thomas SE, Gass KA, Ward SE. Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs. 1989;12(4):209–215. doi: 10.1097/00002820-198908000-00003.
    1. Bakas T, Burgener SC. Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Top Stroke Rehabil. 2002;9(1):34–45. doi: 10.1310/GN0J-EXVX-KX0B-8X43.
    1. Bakas T, Champion V. Development and psychometric testing of the Bakas Caregiving Outcomes Scale. Nurs Res. 1999;48(5):250–259. doi: 10.1097/00006199-199909000-00005.
    1. Radloff L. The CES-D Scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1:385–401. doi: 10.1177/014662167700100306.
    1. Andresen EM, Malmgren JA, Carter WB, Patrick DL. Screening for depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale) Am J Prev Med. 1994;10(2):77–84. doi: 10.1016/S0749-3797(18)30622-6.
    1. Irwin M, Artin KH, Oxman MN. Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D) Arch Intern Med. 1999;159(15):1701–1704. doi: 10.1001/archinte.159.15.1701.
    1. Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–1097. doi: 10.1001/archinte.166.10.1092.
    1. Campbell N, Boustani M, Limbil T, Ott C, Fox C, Maidment I, et al. The cognitive impact of anticholinergics: a clinical review. Clin Interv Aging. 2009;4:225–233.
    1. Cottingham AH, Alder C, Austrom MG, Johnson CS, Boustani MA, Litzelman DK. New workforce development in dementia care: screening for “caring”: preliminary data. J Am Geriatr Soc. 2014;62(7):1364–1368. doi: 10.1111/jgs.12886.
    1. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985;49(1):71–75. doi: 10.1207/s15327752jpa4901_13.
    1. Diener E, Pavot W. Review of the Satisfaction with Life Scale. In: Diener E, editor. Assessing well-being: the collected works of Ed Diener (Social Indicators Research series, 39) Dordrecht: Springer; 2009. pp. 101–117.
    1. Pavot W, Diener E. Review of the Satisfaction With Life Scale. Psychol Assess. 1993;5(2):164–172. doi: 10.1037/1040-3590.5.2.164.
    1. Pavot W, Diener E, Colvin CR, Sandvik E. Further validation of the Satisfaction with Life Scale: evidence for the cross-method convergence of well-being measures. J Pers Assess. 1991;57(1):149–161. doi: 10.1207/s15327752jpa5701_17.
    1. Bass DM, Noelker LS, Rechlin LR. The moderating influence of service use on negative caregiving consequences. J Gerontol B Psychol Sci Soc Sci. 1996;51(3):S121–S131. doi: 10.1093/geronb/51B.3.S121.
    1. Benjamin Rose Institute . Service use by Impaired elderly and informal caregivers: client and caregiver instruments. Cleveland: Author; 1992.
    1. Judge KS, Menne HL, Whitlatch CJ. Stress process model for individuals with dementia. Gerontologist. 2010;50(3):294–302. doi: 10.1093/geront/gnp162.
    1. Truzzi A, Valente L, Engelhardt E, Laks J. The association between caregiver distress and individual neuropsychiatric symptoms of dementia. Dement Neuropsychol. 2013;7(3):286–291. doi: 10.1590/S1980-57642013DN70300009.
    1. Krestar ML, Looman W, Powers S, Dawson N, Judge KS. Including individuals with memory impairment in the research process: the importance of scales and response categories used in surveys. J Empirical Res Hum Res Ethics. 2012;7(2):70–79. doi: 10.1525/jer.2012.7.2.70.
    1. Little RJA, Rubin DB. Statistical analysis with missing data. 2. New York: Wiley; 2002.
    1. Rosland AM, Nelson K, Sun H, Dolan ED, Maynard C, Bryson C, et al. The patient-centered medical home in the Veterans Health Administration. Am J Manag Care. 2013;19(7):e263–e272.
    1. Yano EM, Bair MJ, Carrasquillo O, Krein SL, Rubenstein LV. Patient Aligned Care Teams (PACT): VA’s journey to implement patient-centered medical homes. J Gen Intern Med. 2014;29(Suppl 2):S547–S549. doi: 10.1007/s11606-014-2835-8.
    1. Bradford A, Kunik ME, Schulz P, Williams SP, Singh H. Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Dis Assoc Disord. 2009;23(4):306–314. doi: 10.1097/WAD.0b013e3181a6bebc.
    1. Mac Donald CL, Johnson AM, Cooper D, Nelson EC, Werner NJ, Shimony JS, et al. Detection of blast-related traumatic brain injury in U.S. military personnel. N Engl J Med. 2011;364(22):2091–2100. doi: 10.1056/NEJMoa1008069.

Source: PubMed

Sponsorer och medarbetare

Medicinska tillstånd

Läkemedelsinterventioner

3
Prenumerera