ECOCAPTURE@HOME: Protocol for the Remote Assessment of Apathy and Its Everyday-Life Consequences

Valérie Godefroy, Richard Levy, Arabella Bouzigues, Armelle Rametti-Lacroux, Raffaella Migliaccio, Bénédicte Batrancourt, Valérie Godefroy, Richard Levy, Arabella Bouzigues, Armelle Rametti-Lacroux, Raffaella Migliaccio, Bénédicte Batrancourt

Abstract

Apathy, a common neuropsychiatric symptom associated with dementia, has a strong impact on patients' and caregivers' quality of life. However, it is still poorly understood and hard to define. The main objective of the ECOCAPTURE programme is to define a behavioural signature of apathy using an ecological approach. Within this program, ECOCAPTURE@HOME is an observational study which aims to validate a method based on new technologies for the remote monitoring of apathy in real life. For this study, we plan to recruit 60 couples: 20 patient-caregiver dyads in which patients suffer from behavioral variant Fronto-Temporal Dementia, 20 patient-caregiver dyads in which patients suffer from Alzheimer Disease and 20 healthy control couples. These dyads will be followed for 28 consecutive days via multi-sensor bracelets collecting passive data (acceleration, electrodermal activity, blood volume pulse). Active data will also be collected by questionnaires on a smartphone application. Using a pool of metrics extracted from these passive and active data, we will validate a measurement model for three behavioural markers of apathy (i.e., daytime activity, quality of sleep, and emotional arousal). The final purpose is to facilitate the follow-up and precise diagnosis of apathy, towards a personalised treatment of this condition within everyday life.

Trial registration: ClinicalTrials.gov NCT04865172.

Keywords: Alzheimer disease; acceleration; apathy; blood volume pulse; electrodermal activity; fronto-temporal dementia; patient-caregiver dyads; remote monitoring; sensors.

Conflict of interest statement

None of the authors has any financial or personal interests to declare regarding this research.

Figures

Figure 1
Figure 1
Methodological characteristics and applications of ECOCAPTURE studies. AD: Alzheimer’s disease; FTD: frontotemporal dementia (behavioural variant); PD: Parkinson’s disease; EDA: electrodermal activity; HR: heart rate.
Figure 2
Figure 2
Experimental design with two broad kinds of variables: (1) the behavioural markers of apathy (in green); (2) the caregiver’s perception of patient-caregiver status (in blue). EDA: electrodermal activity (or skin conductance); HR: heart rate.
Figure 3
Figure 3
Example of follow-up calendar for a patient-caregiver dyad. Sensors are worn by both patient and caregiver. Questionnaires are completed exclusively by the caregiver.
Figure 4
Figure 4
Summarised data flow during the 28-day follow-up.

References

    1. Robert P.H., Clairet S., Benoit M., Koutaich J., Bertogliati C., Tible O., Caci H., Borg M., Brocker P., Bedoucha P. The Apathy Inventory: Assessment of Apathy and Awareness in Alzheimer’s Disease, Parkinson’s Disease and Mild Cognitive Impairment. Int. J. Geriatr. Psychiatry. 2002;17:1099–1105. doi: 10.1002/gps.755.
    1. Pasquier F., Lebert F., Lavenu I., Guillaume B. The Clinical Picture of Frontotemporal Dementia: Diagnosis and Follow-Up. DEM. 1999;10:10–14. doi: 10.1159/000051206.
    1. Aalten P., Verhey F.R., Boziki M., Bullock R., Byrne E.J., Camus V., Caputo M., Collins D., de Deyn P.P., Elina K. Neuropsychiatric Syndromes in Dementia. Dement. Geriatr. Cogn. Disord. 2007;24:457–463. doi: 10.1159/000110738.
    1. Hurt C., Bhattacharyya S., Burns A., Camus V., Liperoti R., Marriott A., Nobili F., Robert P., Tsolaki M., Vellas B. Patient and Caregiver Perspectives of Quality of Life in Dementia. Dement. Geriatr. Cogn. Disord. 2008;26:138–146. doi: 10.1159/000149584.
    1. Wadsworth L.P., Lorius N., Donovan N.J., Locascio J.J., Rentz D.M., Johnson K.A., Sperling R.A., Marshall G.A. Neuropsychiatric Symptoms and Global Functional Impairment along the Alzheimer’s Continuum. Dement. Geriatr. Cogn. Disord. 2012;34:96–111. doi: 10.1159/000342119.
    1. Starkstein S.E., Jorge R., Mizrahi R., Robinson R.G. A Prospective Longitudinal Study of Apathy in Alzheimer’s Disease. J. Neurol. Neurosurg. Psychiatry. 2006;77:8–11. doi: 10.1136/jnnp.2005.069575.
    1. Lechowski L., Benoit M., Chassagne P., Vedel I., Tortrat D., Teillet L., Vellas B. Persistent Apathy in Alzheimer’s Disease as an Independent Factor of Rapid Functional Decline: The REAL Longitudinal Cohort Study. Int. J. Geriatr. Psychiatry. 2009;24:341–346. doi: 10.1002/gps.2125.
    1. Drijgers R.L., Aalten P., Winogrodzka A., Verhey F.R.J., Leentjens A.F.G. Pharmacological Treatment of Apathy in Neurodegenerative Diseases: A Systematic Review. Dement. Geriatr. Cogn. Disord. 2009;28:13–22. doi: 10.1159/000228840.
    1. Brodaty H., Burns K. Nonpharmacological Management of Apathy in Dementia: A Systematic Review. Am. J. Geriatr. Psychiatry. 2012;20:549–564. doi: 10.1097/JGP.0b013e31822be242.
    1. Marin R.S. Apathy: A Neuropsychiatric Syndrome. J. Neuropsychiatry Clin. Neurosci. 1991 doi: 10.1176/jnp.3.3.243.
    1. Marin R.S. Apathy: Concept, Syndrome, Neural Mechanisms, and Treatment. Semin. Clin. Neuropsychiatry. 1996;1:304–314.
    1. Levy R., Dubois B. Apathy and the Functional Anatomy of the Prefrontal Cortex–Basal Ganglia Circuits. Cerebr. Cortex. 2006;16:916–928. doi: 10.1093/cercor/bhj043.
    1. Robert P., Lanctôt K.L., Agüera-Ortiz L., Aalten P., Bremond F., Defrancesco M., Hanon C., David R., Dubois B., Dujardin K., et al. Is It Time to Revise the Diagnostic Criteria for Apathy in Brain Disorders? The 2018 International Consensus Group. Eur. Psychiatry. 2018;54:71–76. doi: 10.1016/j.eurpsy.2018.07.008.
    1. Marin R.S., Biedrzycki R.C., Firinciogullari S. Reliability and Validity of the Apathy Evaluation Scale. Psychiatry Res. 1991;38:143–162. doi: 10.1016/0165-1781(91)90040-V.
    1. Levy R. Apathy: A Pathology of Goal-Directed Behaviour. A New Concept of the Clinic and Pathophysiology of Apathy. Rev. Neurol. 2012;168:585–597. doi: 10.1016/j.neurol.2012.05.003.
    1. Massimo L., Powers J.P., Evans L.K., McMillan C.T., Rascovsky K., Eslinger P., Ersek M., Irwin D.J., Grossman M. Apathy in Frontotemporal Degeneration: Neuroanatomical Evidence of Impaired Goal-Directed Behavior. Front. Hum. Neurosci. 2015;9 doi: 10.3389/fnhum.2015.00611.
    1. Wei G., Irish M., Hodges J.R., Piguet O., Kumfor F. Disease-Specific Profiles of Apathy in Alzheimer’s Disease and Behavioural-Variant Frontotemporal Dementia Differ across the Disease Course. J. Neurol. 2019:1–11. doi: 10.1007/s00415-019-09679-1.
    1. Radakovic R., Colville S., Cranley D., Starr J.M., Pal S., Abrahams S. Multidimensional Apathy in Behavioral Variant Frontotemporal Dementia, Primary Progressive Aphasia, and Alzheimer Disease. J. Geriatr. Psychiatry Neurol. 2020;33:1–8. doi: 10.1177/0891988720924716.
    1. Massimo L., Evans L.K., Grossman M. Differentiating Subtypes of Apathy to Improve Person-Centered Care in Frontotemporal Degeneration. J. Gerontol. Nurs. 2014;40:58–65. doi: 10.3928/00989134-20140827-01.
    1. DelliFraine J.L., Dansky K.H. Home-Based Telehealth: A Review and Meta-Analysis. J. Telemed. Telecare. 2008;14:62–66. doi: 10.1258/jtt.2007.070709.
    1. Korman M., Weiss P.L., Kizony R. Living Labs: Overview of Ecological Approaches for Health Promotion and Rehabilitation. Disabil. Rehabil. 2016;38:613–619. doi: 10.3109/09638288.2015.1059494.
    1. Dorsey E.R., Glidden A.M., Holloway M.R., Birbeck G.L., Schwamm L.H. Teleneurology and Mobile Technologies: The Future of Neurological Care. Nat. Rev. Neurol. 2018;14:285–297. doi: 10.1038/nrneurol.2018.31.
    1. König A., Aalten P., Verhey F., Bensadoun G., Petit P.-D., Robert P., David R. A Review of Current Information and Communication Technologies: Can They Be Used to Assess Apathy?: Current and New Methods for the Assessment of Apathy. Int. J. Geriatr. Psychiatry. 2014;29:345–358. doi: 10.1002/gps.4017.
    1. Manera V., Abrahams S., Agüera-Ortiz L., Bremond F., David R., Fairchild K., Gros A., Hanon C., Husain M., König A. Recommendations for the Nonpharmacological Treatment of Apathy in Brain Disorders. Am. J. Geriatr. Psychiatry. 2020;28:410–420. doi: 10.1016/j.jagp.2019.07.014.
    1. Chi N.-C., Demiris G. A Systematic Review of Telehealth Tools and Interventions to Support Family Caregivers. J. Telemed. Telecare. 2015;21:37–44. doi: 10.1177/1357633X14562734.
    1. David R., Rivet A., Robert P.H., Mailland V., Friedman L., Zeitzer J.M., Yesavage J. Ambulatory Actigraphy Correlates with Apathy in Mild Alzheimer’s Disease. Dementia. 2010;9:509–516. doi: 10.1177/1471301210381678.
    1. David R., Mulin E., Friedman L., Le Duff F., Cygankiewicz E., Deschaux O., Garcia R., Yesavage J.A., Robert P.H., Zeitzer J.M. Decreased Daytime Motor Activity Associated With Apathy in Alzheimer Disease: An Actigraphic Study. Am. J. Geriatr. Psychiatry. 2012;20:806–814. doi: 10.1097/JGP.0b013e31823038af.
    1. Mulin E., Zeitzer J.M., Friedman L., Le Duff F., Yesavage J., Robert P.H., David R. Relationship between Apathy and Sleep Disturbance in Mild and Moderate Alzheimer’s Disease: An Actigraphic Study. J. Alzheimer’s Dis. 2011;25:85–91. doi: 10.3233/JAD-2011-101701.
    1. Zeitzer J.M., David R., Friedman L., Mulin E., Garcia R., Wang J., Yesavage J.A., Robert P.H., Shannon W. Phenotyping Apathy in Individuals With Alzheimer Disease Using Functional Principal Component Analysis. Am. J. Geriatr. Psychiatry. 2013;21:391–397. doi: 10.1016/j.jagp.2012.12.012.
    1. Valembois L., Oasi C., Pariel S., Jarzebowski W., Lafuente-Lafuente C., Belmin J. Wrist Actigraphy: A Simple Way to Record Motor Activity in Elderly Patients with Dementia and Apathy or Aberrant Motor Behavior. J. Nutr. Health Aging. 2015;19:759–764. doi: 10.1007/s12603-015-0530-z.
    1. Merrilees J., Dowling G.A., Hubbard E., Mastick J., Ketelle R., Miller B.L. Characterization of Apathy in Persons With Frontotemporal Dementia and the Impact on Family Caregivers. Alzheimer Dis. Assoc. Disord. 2013;27:62–67. doi: 10.1097/WAD.0b013e3182471c54.
    1. Mohr D.C., Zhang M., Schueller S.M. Personal Sensing: Understanding Mental Health Using Ubiquitous Sensors and Machine Learning. Annu. Rev. Clin. Psychol. 2017;13:23–47. doi: 10.1146/annurev-clinpsy-032816-044949.
    1. Batrancourt B.M., Lecouturier K., Ferrand-Verdejo J., Guillemot V., Azuar C., Bendetowicz D., Migliaccio R., Rametti-Lacroux A., Dubois B., Levy R. Exploration Deficits under Ecological Conditions as a Marker of Apathy in Frontotemporal Dementia. Front. Neurol. 2019;10:941. doi: 10.3389/fneur.2019.00941.
    1. Bouldin E.D., Winter K.H., Andresen E.M. Lack of Choice in Caregiving Decision and Caregiver Risk of Stress, North Carolina, 2005. Prev. Chronic Dis. 2010;7:A41.
    1. Radakovic R., Abrahams S. Developing a New Apathy Measurement Scale: Dimensional Apathy Scale. Psychiatry Res. 2014;219:658–663. doi: 10.1016/j.psychres.2014.06.010.
    1. Dietz J., Bradley M.M., Jones J., Okun M.S., Perlstein W.M., Bowers D. The Late Positive Potential, Emotion and Apathy in Parkinson’s Disease. Neuropsychologia. 2013;51:960–966. doi: 10.1016/j.neuropsychologia.2013.01.001.
    1. Sano A., Picard R.W. Toward a Taxonomy of Autonomic Sleep Patterns with Electrodermal Activity. Annu. Int. Conf. IEEE Eng. Med. Biol. Soc. 2011;2011:777–780. doi: 10.1109/IEMBS.2011.6090178.
    1. Stein P.K., Pu Y. Heart Rate Variability, Sleep and Sleep Disorders. Sleep Med. Rev. 2012;16:47–66. doi: 10.1016/j.smrv.2011.02.005.
    1. Grapperon J., Pignol A.-C., Vion-Dury J. La mesure de la réaction électrodermale. L’Encéphale. 2012;38:149–155. doi: 10.1016/j.encep.2011.05.004.
    1. Appelhans B.M., Luecken L.J. Heart Rate Variability as an Index of Regulated Emotional Responding. Rev. Gen. Psychol. 2006;10:229–240. doi: 10.1037/1089-2680.10.3.229.
    1. Chase T.N. Apathy in Neuropsychiatric Disease: Diagnosis, Pathophysiology, and Treatment. Neurotox. Res. 2011;19:266–278. doi: 10.1007/s12640-010-9196-9.
    1. Rascovsky K., Hodges J.R., Knopman D., Mendez M.F., Kramer J.H., Neuhaus J., van Swieten J.C., Seelaar H., Dopper E.G.P., Onyike C.U., et al. Sensitivity of Revised Diagnostic Criteria for the Behavioural Variant of Frontotemporal Dementia. Brain. 2011;134:2456–2477. doi: 10.1093/brain/awr179.
    1. Benoit M., Staccini P., Brocker P., Benhamidat T., Bertogliati C., Lechowski L., Tortrat D., Robert P.H. Symptômes Comportementaux et Psychologiques Dans La Maladied’Alzheimer: Résultats de l’étude . Rev. Méd. Interne. 2003;24:319s–324s. doi: 10.1016/S0248-8663(03)80690-2.
    1. Dubois B., Feldman H.H., Jacova C., Hampel H., Molinuevo J.L., Blennow K., DeKosky S.T., Gauthier S., Selkoe D., Bateman R., et al. Advancing Research Diagnostic Criteria for Alzheimer’s Disease: The IWG-2 Criteria. Lancet Neurol. 2014;13:614–629. doi: 10.1016/S1474-4422(14)70090-0.
    1. Starkstein S.E., Mayberg H.S., Preziosi T., Andrezejewski P., Leiguarda R., Robinson R.G. Reliability, Validity, and Clinical Correlates of Apathy in Parkinson’s Disease. J. Neuropsychiatry Clin. Neurosci. 1992;4:134–139.
    1. Bédard M., Pedlar D., Martin N.J., Malott O., Stones M.J. Burden in Caregivers of Cognitively Impaired Older Adults Living in the Community: Methodological Issues and Determinants. Int. Psychogeriatr. 2000;12:307–332. doi: 10.1017/S1041610200006426.
    1. Stewart M. The Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) Aust. J. Physiother. 2007;53:208. doi: 10.1016/S0004-9514(07)70033-8.
    1. Cunny K.A., Perri M. Single-item vs multiple-item measures of health-related quality of life. Psychol. Rep. 1991;69:127–130. doi: 10.2466/pr0.1991.69.1.127.
    1. Westland J.C. Lower Bounds on Sample Size in Structural Equation Modeling. Electron. Commer. Res. Appl. 2010;9:476–487. doi: 10.1016/j.elerap.2010.07.003.
    1. Picard R.W., Fedor S., Ayzenberg Y. Multiple Arousal Theory and Daily-Life Electrodermal Activity Asymmetry. Emot. Rev. 2016;8:62–75. doi: 10.1177/1754073914565517.
    1. Can Y.S., Chalabianloo N., Ekiz D., Ersoy C. Continuous Stress Detection Using Wearable Sensors in Real Life: Algorithmic Programming Contest Case Study. Sensors. 2019;19:1849. doi: 10.3390/s19081849.

Source: PubMed

Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

3
Abonner