Do communication interventions affect the quality-of-life of people with dementia and their families? A systematic review

References

• American Speech-Language-Hearing Association. (2017). Dementia (Practice Portal). Retrieved October 13, 2022, www.asha.org/Practice-Portal/Clinical-Topics/Dementia/.ASHA
   Google Scholar
• Andrade-Calderón, P., Salvador-Cruz, J., & Sosa-Ortiz, A. L. (2015). Positive impact of speech therapy in progressive non-fluent aphasia. Acta Colombiana de Psicología, 18(2), 101–114. https://doi.org/10.14718/ACP.2015.18.2.9
   Google Scholar
• Banerjee, S., Willis, R., Graham, N., & Gurland, B. J. (2010). The Stroud/ADI dementia quality framework: A cross‐national population‐level framework for assessing the quality of life impacts of services and policies for people with dementia and their family carers. International Journal of Geriatric Psychiatry, 25(3), 249–257. https://doi.org/10.1002/gps.2330
   PubMed Web of Science ®Google Scholar
• Banovic, S., Zunic, L. J., & Sinanovic, O. (2018). Communication difficulties as a result of dementia. Materia Socio-Medica, 30(3), 221–224. https://doi.org/10.5455/msm.2018.30.221-224
   PubMedGoogle Scholar
• Barnes, C. J., & Markham, C. (2018). A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: The Talking Sense programme. International Journal of Language & Communication Disorders, 53(3), 615–627. https://doi.org/10.1111/1460-6984.12375
   PubMed Web of Science ®Google Scholar
• Bourgeois, M. S., Camp, C., Rose, M., White, B., Malone, M., Carr, J., & Rovine, M. (2003). A comparison of training strategies to enhance use of external aids by persons with dementia. Journal of Communication Disorders, 36(5), 361–378. https://doi.org/10.1016/S0021-9924(03)00051-0
   PubMed Web of Science ®Google Scholar
• Breitenstein, C., Grewe, T., Flöel, A., Ziegler, W., Springer, L., Martus, P., Huber, W., Willmes, K., Ringelstein, E. B., Haeusler, K. G., Abel, S., Glindemann, R., Domahs, F., Regenbrecht, F., Schlenck, K.-J., Thomas, M., Obrig, H., de Langen, E., Rocker, R., … Baumgaertner, A., FCET2EC study group (2017). Intensive speech and language therapy in patients with chronic aphasia after stroke: A randomised, open-label, blinded-endpoint, controlled trial in a health-care setting. Lancet (London, England), 389(10078), 1528–1538. https://doi.org/10.1016/S0140-6736(17)30067-3
   PubMed Web of Science ®Google Scholar
• Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL). The Gerontologist, 39(1), 25–35. https://doi.org/10.1093/geront/39.1.25
   PubMed Web of Science ®Google Scholar
• Brodaty, H., Green, A., Sc Hons, B., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51(5), 657–664. https://doi.org/10.1034/j.1600-0579.2003.00210.x
   PubMed Web of Science ®Google Scholar
• Burgio, L. D., & Fisher, S. E. (2000). Application of psychosocial interventions for treating behavioral and psychological symptoms of dementia. International Psychogeriatrics, 12(S1), 351–358. https://doi.org/10.1017/S1041610200007274
   Google Scholar
• Cadório, I., Figueiredo, D., Martins, P., Cardoso, R., Santos, J., & Lousada, M. (2019). Combined restorative and compensatory treatment for primary progressive aphasia: A case report. Aphasiology, 35(2), 222–239. https://doi.org/10.1080/02687038.2019.1687842
   Web of Science ®Google Scholar
• Clare, L. (2017). Living well with dementia has become a key focus of policy. The Psychologist, 30, 66–69.
   Web of Science ®Google Scholar
• Clare, L., Wu, Y.-T., Jones, I. R., Victor, C. R., Nelis, S. M., Martyr, A., Quinn, C., Litherland, R., Pickett, J. A., Hindle, J. V., Jones, R. W., Knapp, M., Kopelman, M. D., Morris, R. G., Rusted, J. M., Thom, J. M., Lamont, R. A., Henderson, C., Rippon, I., Hillman, A., & Matthews, F. E, IDEAL Study Team (2019). A comprehensive model of factors associated with subjective perceptions of “living well” with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders, 33(1), 36–41. https://doi.org/10.1097/WAD.0000000000000286
   PubMed Web of Science ®Google Scholar
• Clare, L., Wu, Y.-T., Quinn, C., Jones, I. R., Victor, C. R., Nelis, S. M., Martyr, A., Litherland, R., Pickett, J. A., Hindle, J. V., Jones, R. W., Knapp, M., Kopelman, M. D., Morris, R. G., Rusted, J. M., Thom, J. M., Lamont, R. A., Henderson, C., Rippon, I., Hillman, A., & Matthews, F. E, IDEAL Study Team (2019). A comprehensive model of factors associated with capability to “live well” for family caregivers of people living with mild-to-moderate dementia: Findings from the IDEAL study. Alzheimer Disease and Associated Disorders, 33(1), 29–35. https://doi.org/10.1097/WAD.0000000000000285
   PubMed Web of Science ®Google Scholar
• Clare, L., Kudlicka, A., Oyebode, J. R., Jones, R. W., Bayer, A., Leroi, I., Kopelman, M., James, I. A., Culverwell, A., Pool, J., Brand, A., Henderson, C., Hoare, Z., Knapp, M., Morgan-Trimmer, S., Burns, A., Corbett, A., Whitaker, R., & Woods, B. (2019). Goal-oriented cognitive rehabilitation for early-stage Alzheimer’s and related dementias: The GREAT RCT. Health Technology Assessment (Winchester, England), 23(10), 1–242. https://doi.org/10.3310/hta23100
   PubMed Web of Science ®Google Scholar
• Clare, L., Gamble, L. D., Martyr, A., Sabatini, S., Nelis, S. M., Quinn, C., Pentecost, C., Victor, C., Jones, R. W., Jones, I. R., Knapp, M., Litherland, R., Morris, R. G., Rusted, J. M., Thom, J. M., Collins, R., Henderson, C., & Matthews, F. E., on behalf of the IDEAL study team (2022a). Longitudinal trajectories of quality of life among people with mild-to-moderate dementia: A latent growth model approach with IDEAL cohort study data. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 77(6), 1037–1050. https://doi.org/10.1093/geronb/gbac022
   PubMed Web of Science ®Google Scholar
• Clare, L., Gamble, L. D., Martyr, A., Sabatini, S., Nelis, S. M., Quinn, C., Pentecost, C., Victor, C., Jones, R. W., Jones, I. R., Knapp, M., Litherland, R., Morris, R. G., Rusted, J. M., Thom, J. M., Collins, R., Henderson, C., & Matthews, F. E., on behalf of the IDEAL study team. (2022b). Living well’ trajectories among family caregivers of people with mild-to-moderate dementia in the IDEAL cohort. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 77(10), 1852–1863. https://doi.org/10.1093/geronb/gbac090
   PubMed Web of Science ®Google Scholar
• Clarke, C., Woods, B., Moniz-Cook, E., Mountain, G., Øksnebjerg, L., Chattat, R., Diaz, A., Gove, D., Vernooij-Dassen, M., & Wolverson, E. (2020). Measuring the well-being of people with dementia: A conceptual scoping review. Health and Quality of Life Outcomes, 18(249), 1–14. https://doi.org/10.1186/s12955-020-01440-x
   Google Scholar
• Department of Health. (2020). Prime Minister’s Challenge on Dementia. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf
   Google Scholar
• Droes, R.-M., Boelens-Van Der Knoop, E. C. C., Bos, J., Meihuizen, L., Ettema, T. P., Gerritsen, D. L., Hoogeveen, F., De Lange, J., & Scholzel-Dorenbos, C. J. M. (2006). Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia, 5(4), 533–558. https://doi.org/10.1177/1471301206069929
   Google Scholar
• Grand, J. H., Caspar, S., & Macdonald, S. W. (2011). Clinical features and multidisciplinary approaches to dementia care. Journal of Multidisciplinary Healthcare, 4, 125–147. https://doi.org/10.2147/JMDH.S17773
   PubMedGoogle Scholar
• Haberstroh, J., Neumeyer, K., Krause, K., Franzmann, J., & Pantel, J. (2011). TANDEM: Communication training for informal caregivers of people with dementia. Aging & Mental Health, 15(3), 405–413. https://doi.org/10.1080/13607863.2010.536135
   PubMed Web of Science ®Google Scholar
• Haberstroh, J., & Johannes, P. (2011). Kommunikation bei Demenz-TANDEM Trainingsmanual [Communication in dementia – TANDEM training manual]. Berlin, Heidelberg: Springer-Verlag.
   Google Scholar
• Han, A., Kim, T. H., & Hong, H. (2020). A factorial randomized controlled trial to examine separate and combined effects of a simulation-based empathy enhancement program and a lecture-based education program on family caregivers of people with dementia. Aging & Mental Health, 25(10), 1930–1940. https://doi.org/10.1080/13607863.2020.1768214
   PubMed Web of Science ®Google Scholar
• Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and aphasia quality of life scale-39 (SAQOL-39) evaluation of acceptability, reliability, and validity. Stroke, 34(8), 1944–1950. https://doi.org/10.1161/01.STR.0000081987.46660.ED
   PubMed Web of Science ®Google Scholar
• Hoefman, R. J., van Exel, N. J. A., Looren de Jong, S., Redekop, W. K., & Brouwer, W. B. F. (2011). A new test of the construct validity of the Carer Qol instrument: Measuring the impact of informal care giving. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 20(6), 875–887. https://doi.org/10.1007/s11136-010-9829-8
   PubMed Web of Science ®Google Scholar
• Hoffmann, T. C., Glasziou, P. P., Boutron, I., Milne, R., Perera, R., Moher, D., Altman, D. G., Barbour, V., Macdonald, H., Johnston, M., Lamb, S. E., Dixon-Woods, M., McCulloch, P., Wyatt, J. C., Chan, A.-W., & Michie, S. (2014). Better reporting of interventions: Template for intervention description and replication (TIDieR) checklist and guide. BMJ (Clinical Research ed.), 348, g1687. https://doi.org/10.1136/bmj.g1687
   PubMed Web of Science ®Google Scholar
• Jokel, R., Meltzer, J., D R, J., D M, L., J C, J., A N, E., & D T, C. (2017). Group intervention for individuals with primary progressive aphasia and their spouses: Who comes first? Journal of Communication Disorders, 66, 51–64. https://doi.org/10.1016/j.jcomdis.2017.04.002
   PubMed Web of Science ®Google Scholar
• Joseph, S., Becker, S., Elwick, H., & Silburn, R. (2012). Adult carers quality of life questionnaire (AC-QoL): Development of an evidence-based tool. Mental Health Review Journal, 17(2), 57–69. https://doi.org/10.1108/13619321211270380
   Google Scholar
• Judge, K. S., Yarry, S. J., Looman, W. J., & Bass, D. M. (2013). Improved strain and psychosocial outcomes for caregivers of individuals with dementia: Findings from project answers. The Gerontologist, 53(2), 280–292. https://doi.org/10.1093/geront/gns076
   PubMed Web of Science ®Google Scholar
• La Rue, A., Felten, K., & Turkstra, L. (2015). Intervention of multi-modal activities for older adults with dementia translation to rural communities. American Journal of Alzheimer’s Disease and Other Dementias, 30(5), 468–477. https://doi.org/10.1177/1533317514568888
   PubMed Web of Science ®Google Scholar
• Leroi, I., Simkin, Z., Hooper, E., Wolski, L., Abrams, H., Armitage, C. J., Camacho, E., Charalambous, A. P., Collin, F., Constantinidou, F., Dawes, P., Elliott, R., Falkingham, S., Frison, E., Hann, M., Helmer, C., Himmelsbach, I., Hussain, H., Marié, S., … Yeung, W. K. (2020). Impact of an intervention to support hearing and vision in dementia: The SENSE-Cog Field Trial. International Journal of Geriatric Psychiatry, 35(4), 348–357. https://doi.org/10.1002/gps.5231
   PubMed Web of Science ®Google Scholar
• Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5(1), 21–32.
   Google Scholar
• Lyketsos, C. G., Gonzales-Salvador, T., Chin, J. J., Baker, A., Black, B., & Rabins, P. (2003). A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. International Journal of Geriatric Psychiatry, 18(4), 275–281. https://doi.org/10.1002/gps.796
   PubMed Web of Science ®Google Scholar
• Martyr, A., Nelis, S. M., Quinn, C., Wu, Y.-T., Lamont, R. A., Henderson, C., Clarke, R., Hindle, J. V., Thom, J. M., Jones, I. R., Morris, R. G., Rusted, J. M., Victor, C. R., & Clare, L. (2018). Living well with dementia: A systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia. Psychological Medicine, 48(13), 2130–2139. https://doi.org/10.1017/S0033291718000405
   PubMed Web of Science ®Google Scholar
• Messemaker, A., Schall, A., Haberstroh, J., & Pantel, J. (2017). MultiTANDEM: Training the trainer to improve homecare for people with dementia. The Journal of Gerontopsychology and Geriatric Psychiatry, 30(4), 165–175. https://doi.org/10.1024/1662-9647/a000178
   Google Scholar
• Mulhern, B., Rowen, D., Brazier, J., Smith, S., Romeo, R., Tait, R., Watchurst, C., Chua, K.-C., Loftus, V., Young, T., Lamping, D., Knapp, M., Howard, R., & Banerjee, S. (2013). Development of DEMQOL-U and DEMQOL-PROXY-U: Generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technology Assessment (Winchester, England), 17(5), v. https://doi.org/10.3310/hta17050
   PubMed Web of Science ®Google Scholar
• Negri, L., Piazza, G., Sartori, R. D. G., Cocchi, M. G., & Delle Fave, A. (2019). The adult carer quality of life questionnaire (AC-QoL): Comparison with measures of burden and well-being, and Italian validation. Disability and Rehabilitation, 41(10), 1207–1216. https://doi.org/10.1080/09638288.2017.1423519
   PubMed Web of Science ®Google Scholar
• Olthof-Nefkens, M. W., Derksen, E. W., Lambregts, B., de Swart, B. J., Nijhuis-van der Sanden, M. W., & Kalf, J. G. (2023). Clinimetric evaluation of the experienced communication in dementia questionnaire. The Gerontologist, 63(1), 40–51. https://doi.org/10.1093/geront/gnab187
   PubMed Web of Science ®Google Scholar
• Paul, D. R., Frattali, C. M., Holland, A. L., Thompson, C. K., Caperton, C. J., & Slater, S. C. (2004). Quality of communication life scale. Rockville, MD: American Speech-Language-Hearing Association.
   Google Scholar
• Pawson, R., Greenhalgh, T., Harvey, G., & Walshe, K. (2005). Realist review – A new method of systematic review designed for complex policy interventions. Journal of Health Services Research & Policy, 10(1_suppl), 21–34. https://doi.org/10.1258/1355819054308530
   PubMedGoogle Scholar
• Perneczky, R. (2019). Dementia treatment versus prevention. Dialogues in Clinical Neuroscience, 21(1), 43–51. https://doi.org/10.31887/dcns.2019.21.1/rperneczky
   PubMed Web of Science ®Google Scholar
• Prince, M., Bryce, R., & Ferri, C. (2011). Alzheimer’s Disease International World Alzheimer Report 2011. The benefits of early diagnosis and intervention. Alzheimer’s Disease International.
   Google Scholar
• Prince, M., Albanese, E., Guerchet, M., & Prina, M. (2014). World Alzheimer Report 2014: Dementia and risk reduction: An analysis of protective and modifiable risk factors.
   Google Scholar
• Quinn, C., Pickett, J. A., Litherland, R., Morris, R. G., Martyr, A., & Clare, L. On behalf of the IDEAL Programme Team. (2022). Living well with dementia: What is possible and how to promote it. International Journal of Geriatric Psychiatry, 37(1), 1–7. https://doi.org/10.1002/gps.5627
   Web of Science ®Google Scholar
• Ross, G. W., Cummings, J. L., & Benson, D. F. (1990). Speech and language alterations in dementia syndromes: Characteristics and treatment. Aphasiology, 4(4), 339–352. https://doi.org/10.1080/02687039008249087
   Web of Science ®Google Scholar
• Royal College of Speech and Language Therapists. (2014). Speech and language therapy provision for people with dementia RCSLT Position Paper. https://www.rcslt.org/wp-content/uploads/media/Project/RCSLT/dementia-position-paper-2014.pdf
   Google Scholar
• Rüttinger, B., & Sauer, J. (2000). Konflikt und Konfliktlösen. Springer Gabler, Wiesbaden: Rosenberger Fachverlag.
   Google Scholar
• Santos, G. D., Nunes, P. V., Stella, F., Brum, P. S., Yassuda, M. S., Ueno, L. M., Gattaz, W. F., & Forlenza, O. V. (2015). Multidisciplinary rehabilitation program: Effects of a multimodal intervention for patients with Alzheimer’s disease and cognitive impairment without dementia. Archives of Clinical Psychiatry (São Paulo), 42(6), 153–156. https://doi.org/10.1590/0101-60830000000066
   Google Scholar
• Savundranayagam, M. Y., Hummert, M. L., & Montgomery, R. J. V. (2005). Investigating the effects of communication problems on caregiver burden. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 60(1), S48–S55. https://doi.org/10.1093/geronb/60.1.S48
   PubMed Web of Science ®Google Scholar
• Schwam, E., & Xu, Y. (2010). Cognition and function in Alzheimer’s disease: Identifying the transitions from moderate to severe disease. Dementia and Geriatric Cognitive Disorders, 29(4), 309–316. https://doi.org/10.1159/000269837
   PubMed Web of Science ®Google Scholar
• Siddaway, A. P., Wood, A. M., & Hedges, L. V. (2019). How to do a systematic review: A best practice guide for conducting and reporting narrative reviews, meta-analyses, and meta-syntheses. Annual Review of Psychology, 70(1), 747–770. https://doi.org/10.1146/annurev-psych-010418-102803
   PubMed Web of Science ®Google Scholar
• Smith, S. C., Lamping, D. L., Banerjee, S., Harwood, R. H., Foley, B., Smith, P., Cook, J. C., Murray, J., Prince, M., Levin, E., Mann, A., & Knapp, M. (2007). Development of a new measure of health-related quality of life for people with dementia: DEMQOL. Psychological Medicine, 37(5), 737–746. https://doi.org/10.1017/S0033291706009469
   PubMed Web of Science ®Google Scholar
• Spector, A., Thorgrimsen, L., Woods, B. O. B., Royan, L., Davies, S., Butterworth, M., & Orrell, M. (2003). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: Randomised controlled trial. The British Journal of Psychiatry: The Journal of Mental Science, 183(3), 248–254. https://doi.org/10.1192/bjp.183.3.248
   PubMed Web of Science ®Google Scholar
• Stiadle, J. M., Scholar, M., & Zarit, S. H. (2014). Communication problems between caregivers and individuals with dementia: Implications for caregiver well-being [Doctoral dissertation]. Pennsylvania State University.
   Google Scholar
• Teri, L., Logsdon, R. G., McCurry, S. M., Pike, K. C., & McGough, E. L. (2018). Translating an evidence-based multicomponent intervention for older adults with dementia and caregivers. The Gerontologist, 60(3), 548–557. https://doi.org/10.1093/geront/gny122
   Web of Science ®Google Scholar
• The WHOQOL Group. (1998). WHO Quality of life scale (WHOQOL-BREF). Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/S0033291798006667
   PubMed Web of Science ®Google Scholar
• Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R. T., & Orrell, M. (2003). Whose quality of life is it anyway? The validity and reliability of the quality of life-Alzheimer’s disease (QoL-AD) scale. Alzheimer Disease and Associated Disorders, 17(4), 201–208. https://doi.org/10.1097/00002093-200310000-00002
   PubMed Web of Science ®Google Scholar
• Volkmer, A., Spector, A., Meitanis, V., Warren, J. D., & Beeke, S. (2020). Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: A systematic review. Aging & Mental Health, 24(9), 1381–1393. https://doi.org/10.1080/13607863.2019.1617246
   PubMed Web of Science ®Google Scholar
• Woods, B., Thorgrimsen, L., Spector, A., Royan, L., & Orrell, M. (2006). Improved quality of life and cognitive stimulation therapy in dementia. Aging & Mental Health, 10(3), 219–226. https://doi.org/10.1080/13607860500431652
   PubMed Web of Science ®Google Scholar
• Woodward, M. (2013). Aspects of communication in Alzheimer’s disease: Clinical features and treatment options. International Psychogeriatrics, 25(6), 877–885. https://doi.org/10.1017/S1041610213000318
   PubMed Web of Science ®Google Scholar
• World Health Organisation. (2012). WHOQOL User Manual. Retrieved October 13, 2022, from https://www.who.int/publications/i/item/WHO-HIS-HSI-Rev.2012.03
   Google Scholar
• World Health Organization. (2019). ICD-11: International classification of diseases (11th revision). Retrieved February 12, 2021, from, https://icd.who.int/
   Google Scholar
• World Health Organisation. (2021). Global status report on the public health response to Dementia. Retrieved October 13, 2022, from https://www.who.int/publications/i/item/9789240033245
   Google Scholar