0
Views
0
CrossRef citations to date
0
Altmetric
Research Article

The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives

ORCID Icon, , , ORCID Icon &
Received 14 May 2024, Accepted 21 Jul 2024, Published online: 05 Aug 2024

References

  • Adams, K. B., & Sanders, S. (2004). Alzheimer’s caregiver differences in experience of loss, grief reactions and depressive symptoms across stage of disease. Dementia, 3(2), 195–210. https://doi.org/10.1177/1471301204042337
  • Anderson, S., Keating, N. C., & Wilson, D. M. (2017, October). Staying married after stroke: A constructivist grounded theory qualitative study. Topics in Stroke Rehabilitation, 24(7), 479–487. https://doi.org/10.1080/10749357.2017.1342335
  • Ang, Y. S., Lockwood, P., Apps, M. A., Muhammed, K., & Husain, M. (2017). Distinct subtypes of apathy revealed by the apathy motivation index. PLoS One, 12(1), e0169938. https://doi.org/10.1371/journal.pone.0169938
  • Atkins, K. J., Andrews, S. C., Chong, T. T., & Stout, J. C. (2021, April). Multidimensional apathy: The utility of the dimensional apathy scale in Huntington's disease. Movement Disorders Clinical Practice, 8(3), 361–370. https://doi.org/10.1002/mdc3.13147
  • Atkins, K. J., Andrews, S. C., Stout, J. C., & Chong, T. T. (2020, December 22). Dissociable motivational deficits in pre-manifest Huntington's disease. Cell Reports Medicine, 1(9), 100152. https://doi.org/10.1016/j.xcrm.2020.100152
  • Aubeeluck, A., Dorey, J., Squitieri, F., Clay, E., Stupple, E. J., De Nicola, A., Buchanan, H., Martino, T., & Toumi, M. (2013, June). Further evidence of reliability and validity of the Huntington's disease quality of life battery for carers: Italian and French translations. Quality of Life Research, 22(5), 1093–1098. https://doi.org/10.1007/s11136-012-0227-2
  • Bates, G., Tabrizi, S., & Jones, L. (2014). Huntington's disease. Oxford University Press.
  • Blandin, K., & Pepin, R. (2017, January). Dementia grief: A theoretical model of a unique grief experience. Dementia (Basel, Switzerland), 16(1), 67–78. https://doi.org/10.1177/1471301215581081
  • Boerner, K., Schulz, R., & Horowitz, A. (2004, December). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19(4), 668–675. https://doi.org/10.1037/0882-7974.19.4.668
  • Bora, E., Velakoulis, D., & Walterfang, M. (2016, January 15). Social cognition in Huntington's disease: A meta-analysis. Behavioural Brain Research, 297, 131–140. https://doi.org/10.1016/j.bbr.2015.10.001
  • Bowen, C., Palmer, S., & Yeates, G. (2010). A relational approach to rehabilitation: Thinking about relationships after brain injury. Karnac Books. https://books.google.co.uk/books?id=LSg-Uq0qnJcC.
  • Brandt, J. (2018, March). Behavioral changes in Huntington disease. Cognitive and Behavioral Neurology, 31(1), 26–35. https://doi.org/10.1097/WNN.0000000000000147
  • Braun, V., & Clarke, V. (2019, August 8). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
  • Braun, V., & Clarke, V. (2021, March 4). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health, 13(2), 201–216. https://doi.org/10.1080/2159676X.2019.1704846
  • Braun, V., & Clarke, V. (2022). Thematic analysis: A practical guide. SAGE. https://www.vlebooks.com/vleweb/product/openreader?id=none&isbn=9781526417299
  • Braun, V., & Clarke, V. (2023a, December). Is thematic analysis used well in health psychology? A critical review of published research, with recommendations for quality practice and reporting. Health Psychology Review, 17(4), 695–718. https://doi.org/10.1080/17437199.2022.2161594
  • Braun, V., & Clarke, V. (2023b, January 25). Toward good practice in thematic analysis: Avoiding common problems and be(com)ing a knowing researcher. International Journal of Transgender Health, 24(1), 1–6. https://doi.org/10.1080/26895269.2022.2129597
  • Burgon, C., Goldberg, S., van der Wardt, V., & Harwood, R. H. (2023, March 1). Experiences and understanding of apathy in people with neurocognitive disorders and their carers: A qualitative interview study. Age and Ageing, 52(3), afad031. https://doi.org/10.1093/ageing/afad031
  • Cartaxo, A., Koller, M., Mayer, H., Kolland, F., & Nagl-Cupal, M. (2023, March 31). Risk factors with the greatest impact on caregiver burden in informal homecare settings in Austria: A quantitative secondary data analysis. Health & Social Care in the Community, 2023, 1–4. https://doi.org/10.1155/2023/3270083
  • Cavallo, M., Sergi, A., & Pagani, M. (2022, June). Cognitive and social cognition deficits in Huntington's disease differ between the prodromal and the manifest stages of the condition: A scoping review of recent evidence. British Journal of Clinical Psychology, 61(2), 214–241. https://doi.org/10.1111/bjc.12337
  • Chan, D., Livingston, G., Jones, L., & Sampson, E. L. (2013, January). Grief reactions in dementia carers: A systematic review. International Journal of Geriatric Psychiatry, 28(1), 1–17. https://doi.org/10.1002/gps.3795
  • Cheung, D. S. K., Ho, K. H. M., Cheung, T. F., Lam, S. C., & Tse, M. M. Y. (2018, November 20). Anticipatory grief of spousal and adult children caregivers of people with dementia. BMC Palliative Care, 17(1), 124. https://doi.org/10.1186/s12904-018-0376-3
  • Connors, M. H., Teixeira-Pinto, A., & Loy, C. T. (2023, Winter). Apathy and depression in Huntington's disease: Distinct longitudinal trajectories and clinical correlates. The Journal of Neuropsychiatry and Clinical Neurosciences, 35(1), 69–76. https://doi.org/10.1176/appi.neuropsych.21070191
  • Daemen, M. M. J., Boots, L. M. M., Oosterloo, M., de Vugt, M. E., & Duits, A. A. (2024, January 2). Facilitators and barriers in caring for a person with Huntington’s disease: Input for a remote support program. Aging & Mental Health, 28(1), 178–187. https://doi.org/10.1080/13607863.2023.2230949
  • Dawson, S., Kristjanson, L. J., Toye, C. M., & Flett, P. (2004, June). Living with Huntington's disease: Need for supportive care. Nursing & Health Sciences, 6(2), 123–130. https://doi.org/10.1111/j.1442-2018.2004.00183.x
  • Decruyenaere, M., Evers-Kiebooms, G., Boogaerts, A., Demyttenaere, K., Dom, R., & Fryns, J.-P. (2005, September 1). Partners of mutation-carriers for Huntington's disease: Forgotten persons? European Journal of Human Genetics, 13(9), 1077–1085. https://doi.org/10.1038/sj.ejhg.5201462
  • De Paepe, A. E., Garcia-Gorro, C., Martinez-Horta, S., Perez, J. P., Kulisevsky, J., Rodriguez-Dechicha, N., Vaquer, I., Subira, S., Calopa, M., Santacruz, P., Munoz, E., Mareca, C., Ruiz-Idiago, J., de Diego-Balaguer, R., & Camara, E. (2022, December). Delineating apathy profiles in Huntington's disease with the short-lille apathy rating scale. Parkinsonism & Related Disorders, 105, 83–89. https://doi.org/10.1016/j.parkreldis.2022.10.025
  • de Vugt, M. E., Riedijk, S. R., Aalten, P., Tibben, A., van Swieten, J. C., & Verhey, F. R. (2006). Impact of behavioural problems on spousal caregivers: A comparison between Alzheimer's disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22(1), 35–41. https://doi.org/10.1159/000093102
  • Doka, K. J. (1989). Disenfranchised grief: Recognizing hidden sorrow. Lexington Books.
  • Domaradzki, J. (2015). The impact of Huntington disease on family carers: A literature overview. Psychiatria Polska, 49(5), 931–944. https://doi.org/10.12740/PP/34496
  • Eddy, C. M., & Rickards, H. (2022, August 24). Social cognition and quality of life in Huntington's disease. Frontiers in Psychiatry, 13, 963457. https://doi.org/10.3389/fpsyt.2022.963457
  • Finlay, L., & Gough, B. (2008). Reflexivity: A practical guide for researchers in health and social sciences. Wiley https://doi.org/10.1002/9780470776094
  • Frith, C. D., & Frith, U. (2023). What makes us social? The MIT Press.
  • Fritz, N. E., Boileau, N. R., Stout, J. C., Ready, R., Perlmutter, J. S., Paulsen, J. S., Quaid, K., Barton, S., McCormack, M. K., Perlman, S. L., Carlozzi, N. E., Carlozzi, N., Dayalu, P., Kratz, A. L., Schilling, S., Austin, A., Canter, M., Goodnight, S., Miner, J., … Lai, J.-S. (2018, Summer). Relationships among apathy, health-related quality of life, and function in Huntington's disease. The Journal of Neuropsychiatry and Clinical Neurosciences, 30(3), 194–201. https://doi.org/10.1176/appi.neuropsych.17080173
  • Furby, H., Siadimas, A., Rutten-Jacobs, L., Rodrigues, F. B., & Wild, E. J. (2022, August). Natural history and burden of Huntington's disease in the UK: A population-based cohort study. European Journal of Neurology, 29(8), 2249–2257. https://doi.org/10.1111/ene.15385
  • Gilsenan, J., Gorman, C., & Shevlin, M. (2023, July–August). Explaining caregiver burden in a large sample of UK dementia caregivers: The role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief. Aging & Mental Health, 27(7), 1274–1281. https://doi.org/10.1080/13607863.2022.2102138
  • Guest, G., MacQueen, K., & Namey, E. (2012). Applied thematic analysis. Sage. https://doi.org/10.4135/9781483384436
  • Hamilton, J. M., Salmon, D. P., Corey-Bloom, J., Gamst, A., Paulsen, J. S., Jerkins, S., Jacobson, M. W., & Peavy, G. (2003, January). Behavioural abnormalities contribute to functional decline in Huntington's disease. Journal of Neurology, Neurosurgery & Psychiatry, 74(1), 120–122. https://doi.org/10.1136/jnnp.74.1.120
  • Hanna, K., Giebel, C., Tetlow, H., Ward, K., Shenton, J., Cannon, J., Komuravelli, A., Gaughan, A., Eley, R., Rogers, C., Rajagopal, M., Limbert, S., Callaghan, S., Whittington, R., Butchard, S., Shaw, L., & Gabbay, M. (2022, May). Emotional and mental wellbeing following COVID-19 public health measures on people living with dementia and carers. Journal of Geriatric Psychiatry and Neurology, 35(3), 344–352. https://doi.org/10.1177/0891988721996816
  • Hebert, R., Bravo, G., & Preville, M. (2000). Reliability, validity and reference values of the Zarit Burden interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging / La Revue Canadienne du Vieillissement, 19(4), 494–507. https://doi.org/10.1017/S0714980800012484
  • Hellem, M. N. N., Hendel, R. K., Hjermind, L. E., Nielsen, J. E., & Vogel, A. (2023). On the association between apathy and deficits of social cognition and executive functions in Huntington’s disease. Journal of the International Neuropsychological Society, 29(4), 369–376. https://doi.org/10.1017/S1355617722000364
  • Hendel, R. K., Hellem, M. N. N., Hjermind, L. E., Nielsen, J. E., & Vogel, A. (2023, May). On the association between apathy and deficits of social cognition and executive functions in Huntington's disease. Journal of the International Neuropsychological Society, 29(4), 369–376. https://doi.org/10.1017/S1355617722000364
  • Hergert, D. C., & Cimino, C. R. (2021, March 16). Predictors of caregiver Burden in Huntington's disease. Archives of Clinical Neuropsychology, 36(8), 1426–1437. https://doi.org/10.1093/arclin/acab009
  • Jones, C., Busse, M., Quinn, L., Dawes, H., Drew, C., Kelson, M., Hood, K., Rosser, A., & Edwards, R. T. (2016, October). The societal cost of Huntington's disease: Are we underestimating the burden? European Journal of Neurology, 23(10), 1588–1590. https://doi.org/10.1111/ene.13107
  • Kempnich, C. L., Andrews, S. C., Fisher, F., Wong, D., Georgiou-Karistianis, N., & Stout, J. C. (2018, May). Emotion recognition correlates with social-neuropsychiatric dysfunction in Huntington's disease. Journal of the International Neuropsychological Society, 24(5), 417–423. https://doi.org/10.1017/S1355617717001308
  • Kitter, B., & Sharman, R. (2015). Caregivers’ support needs and factors promoting resiliency after brain injury. Brain Injury, 29(9), 1082–1093. https://doi.org/10.3109/02699052.2015.1018323
  • Klar, V. S., Ang, Y. S., Lockwood, P., Attaallah, B., Dickson, S., Drew, D., Kienast, A., Maio, M. R., Plant, O., Slavkova, E., Toniolo, S., Zambellas, R., Irani, S. R., & Husain, M. (2022, March). Assessment of apathy in neurological patients using the apathy motivation index caregiver version. Journal of Neuropsychology, 16(1), 236–258. https://doi.org/10.1111/jnp.12262
  • Large, S., & Slinger, R. (2015, March). Grief in caregivers of persons with Alzheimer's disease and related dementia: A qualitative synthesis. Dementia (Basel, Switzerland), 14(2), 164–183. https://doi.org/10.1177/1471301213494511
  • Larsen, H. G., & Adu, P. (2021). The theoretical framework in phenomenological research. Taylor & Francis. https://doi.org/10.4324/9781003084259
  • Leidl, B. F., Fox-Davis, D., Walker, F. O., Gabbard, J., & Marterre, B. (2023, January). Layers of loss: A scoping review and taxonomy of HD caregivers’ spiritual suffering, grief/loss and coping strategies. Journal of Pain and Symptom Management, 65(1), e29–e50. https://doi.org/10.1016/j.jpainsymman.2022.09.010
  • Lemercier, P., Cleret de Langavant, L., Hamet Bagnou, J., Youssov, K., Lemoine, L., Audureau, E., Massart, R., & Bachoud-Levi, A. C. (2022, January 27). Self-reported social relationship capacities predict motor, functional and cognitive decline in Huntington's disease. Journal of Personalized Medicine, 12(2), 174 –190. https://doi.org/10.3390/jpm12020174
  • Levy, M. L., Cummings, J. L., Fairbanks, L. A., Masterman, D., Miller, B. L., Craig, A. H., Paulsen, J. S., & Litvan, I. (1998, Summer). Apathy is not depression. The Journal of Neuropsychiatry and Clinical Neurosciences, 10(3), 314–319. https://doi.org/10.1176/jnp.10.3.314
  • Lindauer, A., & Harvath, T. A. (2014, October). Pre-death grief in the context of dementia caregiving: A concept analysis. Journal of Advanced Nursing, 70(10), 2196–2207. https://doi.org/10.1111/jan.12411
  • Manca, R., De Marco, M., Colston, A., Raymont, V., Amin, J., Davies, R., Kumar, P., Russell, G., Blackburn, D. J., & Venneri, A. (2022, October). The impact of social isolation due to the COVID-19 pandemic on patients with dementia and caregivers. Acta Neuropsychiatrica, 34(5), 276–281. https://doi.org/10.1017/neu.2022.12
  • Marin, R. S. (1991, Summer). Apathy: A neuropsychiatric syndrome. The Journal of Neuropsychiatry and Clinical Neurosciences, 3(3), 243–254. https://doi.org/10.1176/jnp.3.3.243
  • Martinez-Horta, S., Perez-Perez, J., van Duijn, E., Fernandez-Bobadilla, R., Carceller, M., Pagonabarraga, J., Pascual-Sedano, B., Campolongo, A., Ruiz-Idiago, J., Sampedro, F., Landwehrmeyer, G. B., Spanish REGISTRY investigators of the European Huntington's Disease Network, & Kulisevsky, J. (2016, April). Neuropsychiatric symptoms are very common in premanifest and early stage Huntington's disease. Parkinsonism & Related Disorders, 25, 58–64. https://doi.org/10.1016/j.parkreldis.2016.02.008
  • Mason, S. L., Schaepers, M., & Barker, R. A. (2021, June 24). Problems with social cognition and decision-making in Huntington's disease: Why is it important? Brain Sciences, 11(7), 838. https://doi.org/10.3390/brainsci11070838
  • Massimo, L., Kales, H. C., & Kolanowski, A. (2018, April). State of the science: Apathy as a model for investigating behavioral and psychological symptoms in dementia. Journal of the American Geriatrics Society, 66(Suppl 1), S4–S12. https://doi.org/10.1111/jgs.15343
  • Massimo, L., Powers, C., Moore, P., Vesely, L., Avants, B., Gee, J., Libon, D. J., & Grossman, M. (2009). Neuroanatomy of apathy and disinhibition in frontotemporal lobar degeneration. Dementia and Geriatric Cognitive Disorders, 27(1), 96–104. https://doi.org/10.1159/000194658
  • Matmati, J., Verny, C., & Allain, P. (2022, Spring). Apathy and Huntington's disease: A literature review based on PRISMA. The Journal of Neuropsychiatry and Clinical Neurosciences, 34(2), 100–112. https://doi.org/10.1176/appi.neuropsych.21060154
  • McAllister, B., Gusella, J. F., Landwehrmeyer, G. B., Lee, J.-M., MacDonald, M. E., Orth, M., Rosser, A. E., Williams, N. M., Holmans, P., Jones, L., & Massey, T. H. (2021, May 11). Timing and impact of psychiatric, cognitive, and motor abnormalities in Huntington disease. Neurology, 96(19), e2395–e2406. https://doi.org/10.1212/WNL.0000000000011893
  • McDonald, S., & Cassel, A. (2017). Rehabilitation of social cognition disorders. In Barbara Wilson, Jill Winegardener, Caroline van Heugten, & Tamara Ownsworth (Eds.), Neuropsychological Rehabilitation: The International Handbook (Vol. 1, pp. 266–281). Routledge. https://doi.org/10.4324/9781315629537.ch34
  • McLauchlan, D. J., Lancaster, T., Craufurd, D., Linden, D. E. J., & Rosser, A. E. (2019, September). Insensitivity to loss predicts apathy in Huntington's disease. Movement Disorders, 34(9), 1381–1391. https://doi.org/10.1002/mds.27787
  • Mitchell, L. A., Hirdes, J., Poss, J. W., Slegers-Boyd, C., Caldarelli, H., & Martin, L. (2015, August 28). Informal caregivers of clients with neurological conditions: Profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Services Research, 15(1), 350. https://doi.org/10.1186/s12913-015-1010-1
  • Morris, L. A., O'Callaghan, C., & Le Heron, C. (2022, June). Disordered decision making: A cognitive framework for apathy and impulsivity in Huntington's disease. Movement Disorders, 37(6), 1149–1163. https://doi.org/10.1002/mds.29013
  • Nair, A., Razi, A., Gregory, S., Rutledge, R. B., Rees, G., & Tabrizi, S. J. (2022, April 29). Imbalanced basal ganglia connectivity is associated with motor deficits and apathy in Huntington's disease. Brain, 145(3), 991–1000. https://doi.org/10.1093/brain/awab367
  • Nowell, L. S., Norris, J. M., White, D. E., & Moules, N. J. (2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 160940691773384. https://doi.org/10.1177/1609406917733847
  • Perez-Gonzalez, A., Vilajoana-Celaya, J., & Guardia-Olmos, J. (2023, October 5). Burden and anticipatory grief in caregivers of family members with Alzheimer's disease and other dementias. Palliative and Supportive Care, 1–11. https://doi.org/10.1017/S1478951523001360
  • Petty, S., Dening, T., Coleston, D. M., & Griffiths, A. (2019, May). Dementia: Beyond disorders of mood. Aging & Mental Health, 23(5), 525–528. https://doi.org/10.1080/13607863.2018.1430742
  • Ponsford, J., Sloan, S., & Snow, P. (2012, October 12). Traumatic brain injury: Rehabilitation for everyday adaptive living (2nd ed.). Routledge. https://doi.org/10.4324/9780203082805
  • Radakovic, R., & Abrahams, S. (2014, November 30). Developing a new apathy measurement scale: Dimensional apathy scale. Psychiatry Research, 219(3), 658–663. https://doi.org/10.1016/j.psychres.2014.06.010
  • Radakovic, R., Davenport, R., Starr, J. M., & Abrahams, S. (2018, January). Apathy dimensions in Parkinson's disease. International Journal of Geriatric Psychiatry, 33(1), 151–158. https://doi.org/10.1002/gps.4697
  • Radakovic, R., Stephenson, L., Colville, S., Swingler, R., Chandran, S., & Abrahams, S. (2016, June). Multidimensional apathy in ALS: Validation of the dimensional apathy scale. Journal of Neurology, Neurosurgery & Psychiatry, 87(6), 663–669. https://doi.org/10.1136/jnnp-2015-310772
  • Reilmann, R., Leavitt, B. R., & Ross, C. A. (2014, September 15). Diagnostic criteria for Huntington's disease based on natural history. Movement Disorders, 29(11), 1335–1341. https://doi.org/10.1002/mds.26011
  • Riehle, M., & Lincoln, T. M. (2017, June). Social consequences of subclinical negative symptoms: An EMG study of facial expressions within a social interaction. Journal of Behavior Therapy and Experimental Psychiatry, 55, 90–98. https://doi.org/10.1016/j.jbtep.2017.01.003
  • Roscoe, L. A., Corsentino, E., Watkins, S., McCall, M., & Sanchez-Ramos, J. (2009, April). Well-being of family caregivers of persons with late-stage Huntington's disease: Lessons in stress and coping. Health Communication, 24(3), 239–248. https://doi.org/10.1080/10410230902804133
  • Rothing, M., Malterud, K., & Frich, J. C. (2015, September). Balancing needs as a family caregiver in Huntington's disease: A qualitative interview study. Health & Social Care in the Community, 23(5), 569–576. https://doi.org/10.1111/hsc.12174
  • Rupp, L., Seidel, K., Penger, S., & Haberstroh, J. (2023). Reducing dementia grief through psychosocial interventions. European Psychologist, 28(2), 83–94. https://doi.org/10.1027/1016-9040/a000501
  • Schreiner, A. S., Morimoto, T., Arai, Y., & Zarit, S. (2006, March). Assessing family caregiver's mental health using a statistically derived cut-off score for the Zarit Burden interview. Aging & Mental Health, 10(2), 107–111. https://doi.org/10.1080/13607860500312142
  • Simpson, J. A., Lovecky, D., Kogan, J., Vetter, L. A., & Yohrling, G. J. (2016, December 15). Survey of the Huntington's disease patient and caregiver community reveals most impactful symptoms and treatment needs. Journal of Huntington's Disease, 5(4), 395–403. https://doi.org/10.3233/JHD-160228
  • Sobel, S. K., & Cowan, D. B. (2000, January 3). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90(1), 49–59. https://doi.org/10.1002/(SICI)1096-8628(20000103)90:1<49::AID-AJMG10>3.0.CO;2-3
  • Sobel, S., & Cowan, C. B. (2003, Spring). Ambiguous loss and disenfranchised grief: The impact of DNA predictive testing on the family as a system. Family Process, 42(1), 47–57. https://doi.org/10.1111/j.1545-5300.2003.00047.x
  • Spikman, J. M., Westerhof-Evers, H. J., & Cassel, A. (2022). Remediating impairments in social cognition. In S. McDonald (Ed.), Clinical disorders of social cognition (pp. 327–349). Routledge/Taylor & Francis Group. https://search.ebscohost.com/login.aspx?direct=true&AuthType=sso&db=psyh&AN=2021-86107-011&authtype=sso&custid=s8993828&site=eds-live&scope=site
  • Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., Entwistle, A., Littlejohns, P., Morris, C., Suleman, R., Thomas, V., & Tysall, C. (2017). GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. BMJ, 358, j3453. https://doi.org/10.1136/bmj.j3453
  • Stoker, T. B., Mason, S. L., Greenland, J. C., Holden, S. T., Santini, H., & Barker, R. A. (2022, February). Huntington's disease: Diagnosis and management. Practical Neurology, 22(1), 32–41. https://doi.org/10.1136/practneurol-2021-003074
  • Stout, J. C., Mason, S. L., & Rossetti, M. A. (2023). The SAGE handbook of clinical neuropsychology. SAGE Publications Ltd. https://doi.org/10.4135/9781529789522
  • Tabrizi, S. J., Langbehn, D. R., Leavitt, B. R., Roos, R. A., Durr, A., Craufurd, D., Kennard, C., Hicks, S. L., Fox, N. C., Scahill, R. I., Borowsky, B., Tobin, A. J., Rosas, H. D., Johnson, H., Reilmann, R., Landwehrmeyer, B., Stout, J. C., & investigators, T.-H. (2009, September). Biological and clinical manifestations of Huntington's disease in the longitudinal TRACK-HD study: Cross-sectional analysis of baseline data. The Lancet Neurology, 8(9), 791–801. https://doi.org/10.1016/S1474-4422(09)70170-X
  • Thompson, J. C., Snowden, J. S., Craufurd, D., & Neary, D. (2002, Winter). Behavior in Huntington's disease: Dissociating cognition-based and mood-based changes. The Journal of Neuropsychiatry and Clinical Neurosciences, 14(1), 37–43. https://doi.org/10.1176/jnp.14.1.37
  • Tong, A., Sainsbury, P., & Craig, J. (2007, December). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  • van Duijn, E., Kingma, E. M., & van der Mast, R. C. (2007, Fall). Psychopathology in verified Huntington's disease gene carriers. The Journal of Neuropsychiatry and Clinical Neurosciences, 19(4), 441–448. https://doi.org/10.1176/jnp.2007.19.4.441
  • van Walsem, M. R., Frich, J. C., Gomez Castaneda, M., Howe, E. I., Pihlstrom, L., Andelic, N., & Aas, E. (2022, December 14). Health related quality of life, service utilization and costs for patients with Huntington's disease in Norway. BMC Health Services Research, 22(1), 1527. https://doi.org/10.1186/s12913-022-08881-8
  • Wootton, A., Starkey, N. J., & Barber, C. C. (2019, October). Unmoving and unmoved: Experiences and consequences of impaired non-verbal expressivity in Parkinson's patients and their spouses. Disability and Rehabilitation, 41(21), 2516–2527. https://doi.org/10.1080/09638288.2018.1471166
  • Yardley, L. (2000, March 1). Dilemmas in qualitative health research. Psychology & Health, 15(2), 215–228. https://doi.org/10.1080/08870440008400302
  • Yasmin, N., & Riley, G. A. (2022, August). Are spousal partner perceptions of continuity and discontinuity within the relationship linked to the symptoms of acquired brain injury? Disability and Rehabilitation, 44(16), 4249–4256. https://doi.org/10.1080/09638288.2021.1900410
  • Youssov, K., Audureau, E., Vandendriessche, H., Morgado, G., Layese, R., Goizet, C., Verny, C., Bourhis, M. L., & Bachoud-Levi, A. C. (2022, October). The burden of Huntington's disease: A prospective longitudinal study of patient/caregiver pairs. Parkinsonism & Related Disorders, 103, 77–84. https://doi.org/10.1016/j.parkreldis.2022.08.023
  • Zarit, S. H., Todd, P. A., & Zarit, J. M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist, 26(3), 260–266. doi:10.1093/geront/26.3.260