Better living with non-memory led dementia: Protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme

Journal article

Suárez-Gonzalez, A., John, A., Brotherhood, E.V., Camic, P., MacKenzie-Jackson, R., Melville,M., Sullivan,M.P., Tudor-Edwards, R., Windle, G., Crutch, S.J. and Stott, J. 2023. Better living with non-memory led dementia: Protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme. Pilot and Feasibility Studies. 9 (172). https://doi.org/10.1186/s40814-023-01403-1
AuthorsSuárez-Gonzalez, A., John, A., Brotherhood, E.V., Camic, P., MacKenzie-Jackson, R., Melville,M., Sullivan,M.P., Tudor-Edwards, R., Windle, G., Crutch, S.J. and Stott, J.
Abstract

Background
Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme.

Methods
A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial.

Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online.

Discussion
Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia.

Trial registration
This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.

KeywordsOnline intervention; Web-based education; Posterior cortical atrophy; Behavioural variant frontotemporal dementia; Primary progressive aphasia,; Caregiving
Year2023
JournalPilot and Feasibility Studies
Journal citation9 (172)
PublisherBMC
ISSN2055-5784
Digital Object Identifier (DOI)https://doi.org/10.1186/s40814-023-01403-1
Official URLhttps://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-023-01403-1
FunderEconomic and Social Research Council (ESRC)
National Institute for Health and Care Research (NIHR)
Publication dates
Print11 Oct 2023
Publication process dates
Accepted28 Sep 2023
Deposited09 Nov 2023
Publisher's version
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Open
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Camic, P. 2015. Community cultural development. in: Clift, S. and Camic, P. (ed.) Oxford Textbook of Creative Arts, Health and Wellbeing Oxford and New York Oxford University Press.
The health and well-being potential of museums and art galleries
Chatterjee, H. and Camic, P. 2015. The health and well-being potential of museums and art galleries. Arts & Health: An International Journal for Research, Policy and Practice. 7 (3), pp. 183-186. https://doi.org/10.1080/17533015.2015.1065594
The impact of community-based arts and health interventions on cognition in people with dementia: a systematic literature review
Young, R., Camic, P. and Tischler, V. 2015. The impact of community-based arts and health interventions on cognition in people with dementia: a systematic literature review. Aging & Mental Health. https://doi.org/10.1080/13607863.2015.1011080
Anxiety related to discharge from inpatient neurorehabilitation: exploring the role of self-efficacy and internal health control beliefs
Genis, M., Camic, P. and Harvey, M. 2015. Anxiety related to discharge from inpatient neurorehabilitation: exploring the role of self-efficacy and internal health control beliefs. Neuropsychological Rehabilitation. https://doi.org/10.1080/09602011.2015.1009473
Material objects and psychological theory: A conceptual literature review
Solway, R., Camic, P., Thomson, L. and Chatterjee, H. 2015. Material objects and psychological theory: A conceptual literature review. Arts & Health: An International Journal for Research, Policy and Practice. 7 (3). https://doi.org/10.1080/17533015.2014.998010
Social prescribing: a review of community referral schemes
Thomson, L., Camic, P. and Chatterjee, H. 2015. Social prescribing: a review of community referral schemes. London University College London.
Social prescribing: a review of community referral schemes
Thomson, L., Camic, P. and Chatterjee, H. 2015. Social prescribing: a review of community referral schemes. London University College London.
Viewing art on a tablet computer: a wellbeing intervention for people with dementia and their caregivers
Tyack, C., Camic, P., Herron, A. and Hulbert, S. 2015. Viewing art on a tablet computer: a wellbeing intervention for people with dementia and their caregivers. Journal of Applied Gerontology. https://doi.org/10.1177/0733464815617287
The wellbeing of allotment gardeners: a mixed methodological study
Webber, J., Hinds, J. and Camic, P. 2015. The wellbeing of allotment gardeners: a mixed methodological study. Ecopsychology. 7 (1), pp. 20-28. https://doi.org/10.1089/eco.2014.0058.
Museum activities in dementia care: using visual analog scales to measure subjective wellbeing
Johnson, J., Culverwell, A., Hulbert, S., Roberton, M. and Camic, P. 2015. Museum activities in dementia care: using visual analog scales to measure subjective wellbeing. Dementia: The International Journal for Social Research and Practice. https://doi.org/10.1177/1471301215611763
The impact of viewing and making art on verbal fluency and memory in people with dementia in an art gallery setting
Young, R., Tischler, V., Hulbert, S. and Camic, P. 2015. The impact of viewing and making art on verbal fluency and memory in people with dementia in an art gallery setting. Psychology of Aesthetics, Creativity, and the Arts. https://doi.org/10.1037/aca0000030
Theorising how art gallery interventions impact people with dementia and their caregivers
Camic, P., Baker, E. and Tischler, V. 2015. Theorising how art gallery interventions impact people with dementia and their caregivers. The Gerontologist. https://doi.org/10.1093/geront/gnv063
Group singing and young people’s psychological well-being
Hinshaw, T., Clift, S., Hulbert, S. and Camic, P. 2015. Group singing and young people’s psychological well-being. International Journal of Mental Health Promotion. https://doi.org/10.1080/14623730.2014.999454
Masculinity, alexithymia and fear of intimacy as predictors of UK men’s attitudes toward seeking professional psychological help
Sullivan, L., Camic, P. and Brown, J. 2014. Masculinity, alexithymia and fear of intimacy as predictors of UK men’s attitudes toward seeking professional psychological help. British Journal of Health Psychology. https://doi.org/10.1111/bjhp.12089
Contributions to more engaged ageing: the arts, health and wellbeing mix
Camic, P. 2013. Contributions to more engaged ageing: the arts, health and wellbeing mix. Generations Review. 23 (3), pp. 11-13.
Couples constructing their experiences of dementia: a relational perspective.
Merrick, K., Camic, P. and O'Shaughnessy, M. 2013. Couples constructing their experiences of dementia: a relational perspective. Dementia: The International Journal for Social Research and Practice. https://doi.org/10.1177/1471301213513029
The psychological efficacy of arts interventions for early-stage dementia
Camic, P. 2013. The psychological efficacy of arts interventions for early-stage dementia.
Museums, art galleries and public health: evaluating health and wellbeing interventions
Camic, P. 2013. Museums, art galleries and public health: evaluating health and wellbeing interventions.
Viewing and making art together: an eight-week gallery-based intervention for people with dementia and their caregivers
Camic, P., Tischler, V. and Pearman, C. 2013. Viewing and making art together: an eight-week gallery-based intervention for people with dementia and their caregivers. Aging & Mental Health. https://doi.org/10.1080/13607863.2013.818101
Museums and art galleries as research partners in public health interventions
Camic, P. 2012. Museums and art galleries as research partners in public health interventions.
An art gallery intervention for dementia care
Tischler, V., Camic, P. and Pearman, C. 2012. An art gallery intervention for dementia care.
Gardening as a mental health intervention: a review
Clatworthy, J., Hinds, J. and Camic, P. 2013. Gardening as a mental health intervention: a review. Mental Health Review. 18 (4), pp. 214-225. https://doi.org/10.1108/MHRJ-02-2013-0007
Toward wellbeing: creativity and resilience in the life and work of Madge Gill
Camic, P. 2013. Toward wellbeing: creativity and resilience in the life and work of Madge Gill.
Museums and galleries as partners for public health interventions
Camic, P. and Chaterjee, H. 2013. Museums and galleries as partners for public health interventions. Perspectives in Public Health. 133 (1), pp. 66-71. https://doi.org/10.1177/1757913912468523
Perceived social stigma and attitudes toward seeking therapy in training: a cross-national study
Digiuni, M., Jones, F. and Camic, P. 2012. Perceived social stigma and attitudes toward seeking therapy in training: a cross-national study. Psychotherapy: Theory, Research, Practice, Training. 2012 (Aug 13). https://doi.org/10.1037/a0028784
Art galleries, episodic memory and verbal fluency in dementia: an exploratory study
Eekelaar, C., Camic, P. and Springham, N. 2012. Art galleries, episodic memory and verbal fluency in dementia: an exploratory study. Psychology of Aesthetics, Creativity, and the Arts. 6 (3), pp. 262-272. https://doi.org/10.1037/a0027499
A multiple single case design study of group therapeutic puppetry with people with severe mental illness
Greaves, A., Camic, P., Maltby, M. and Myllari, L. 2012. A multiple single case design study of group therapeutic puppetry with people with severe mental illness. The Arts in Psychotherapy. 39 (4), pp. 251-261. https://doi.org/10.1016/j.aip.2012.03.002
Found objects in clinical practice: preliminary evidence
Camic, P., Brooker, J. and Neal, A. 2011. Found objects in clinical practice: preliminary evidence. The Arts in Psychotherapy. 38 (3), pp. 151-159. https://doi.org/10.1016/j.aip.2011.04.002
New roles for art galleries: art-viewing as a community intervention for family carers of people with mental health problems
Roberts, S., Camic, P. and Springham, N. 2011. New roles for art galleries: art-viewing as a community intervention for family carers of people with mental health problems. Arts & Health: An International Journal for Research, Policy and Practice. 3 (2), pp. 146-159. https://doi.org/10.1080/17533015.2011.561360
Does a ‘singing together group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study.
Camic, P., Williams, C. and Meeten, F. 2011. Does a ‘singing together group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study. Dementia: The International Journal for Social Research and Practice. 12 (3). https://doi.org/10.1177/1471301211422761
Factors associated with parental adaptation to having a child with a cleft lip and/or palate: the impact of parental diagnosis
O'Hanlon, K., Camic, P. and Shear, J. 2012. Factors associated with parental adaptation to having a child with a cleft lip and/or palate: the impact of parental diagnosis. The Cleft Palate-Craniofacial Journal. 49 (6), pp. 718-729. https://doi.org/10.1597/10-018
Using focused ethnography in psychological research
Simonds, L., Camic, P. and Causey, A. 2012. Using focused ethnography in psychological research. in: Cooper, H. (ed.) APA Handbook of Research Methods in Psychology: Volume 2: Research Designs: Quantitative, Qualitative, Neuropsychological, and Biological Washington, DC American Psychological Association.
Viewing together: material objects, art-making and dementia care
Tischler, V., Camic, P. and Pearman, C. 2012. Viewing together: material objects, art-making and dementia care.
Role of galleries and museums in relation to wellbeing
Camic, P. 2012. Role of galleries and museums in relation to wellbeing.
The evidence for arts and dementia: recent research findings
Camic, P. 2011. The evidence for arts and dementia: recent research findings.
What research is telling us about galleries and wellbeing
Camic, P. 2011. What research is telling us about galleries and wellbeing.
Benefits of choral singing on health: a comparison of singers with high and low psychological wellbeing
Livesey, L., Morrison, I., Clift, S. and Camic, P. 2012. Benefits of choral singing on health: a comparison of singers with high and low psychological wellbeing. Journal of Public Mental Health. 11 (1), pp. 10-26. https://doi.org/10.1108/17465721211207275
Mind-mindedness in parents of pre-schoolers: a comparison between clinical and community samples
Walker, T., Wheatcroft, R. and Camic, P. 2012. Mind-mindedness in parents of pre-schoolers: a comparison between clinical and community samples. Clinical Child Psychology and Psychiatry. 17 (3), pp. 1-18. https://doi.org/10.1177/1359104511409142
The role of 'meaning' in African immigrants' adaptation to HIV
Camic, P., Ebubedike, N. and Gibson, S. 2008. The role of 'meaning' in African immigrants' adaptation to HIV.
Cultural reuse as a healthcare practice: the psychosocial-ecology of using found and second-hand objects
Camic, P. 2008. Cultural reuse as a healthcare practice: the psychosocial-ecology of using found and second-hand objects.
Curiosity shops, alley pickings and assemblage: the psychological benefits of using found objects
Camic, P. 2007. Curiosity shops, alley pickings and assemblage: the psychological benefits of using found objects.
The art museum as a health promoting environment
Camic, P. and Springham, N. 2009. The art museum as a health promoting environment.
The clinical psychologist's role in the Osteo-Odonto Kerato Prosthesis Clinic(OOKP): A one year review
Camic, P., Busutill, A., Holt, C., Gomaa, A., Herold, J., Throp, S. and Liu, C. 2009. The clinical psychologist's role in the Osteo-Odonto Kerato Prosthesis Clinic(OOKP): A one year review.
Using photovoice within a community-based intergenerational intervention
Camic, P., Alcock, C. and Barker, C. 2009. Using photovoice within a community-based intergenerational intervention.
Gallery as laboratory: Experiments in new social practices
Camic, P., Roberts, S. and Colbert, S. 2009. Gallery as laboratory: Experiments in new social practices.
Creating an evidence base for using found objects in healthcare via art, art therapy and clinical psychology
Camic, P. 2009. Creating an evidence base for using found objects in healthcare via art, art therapy and clinical psychology.
University-trust collaborative research relationships: building a partnership
Camic, P., Meeten, F. and Williams, C. 2010. University-trust collaborative research relationships: building a partnership.
Does a 'singing together' group improve the quality of life of people with a dementia and their carers?: a pilot evaluation study
Camic, P., Williams, C., Clift, S. and Meeten, F. 2010. Does a 'singing together' group improve the quality of life of people with a dementia and their carers?: a pilot evaluation study.
Making research partnerships better than a blind date
Camic, P. 2010. Making research partnerships better than a blind date.
The art gallery: a place for enhancing mental health
Camic, P. 2010. The art gallery: a place for enhancing mental health.
The lives of adults over 30 living with sickle cell disorder
Caird, H., Camic, P. and Thomas, V. 2011. The lives of adults over 30 living with sickle cell disorder. British Journal of Health Psychology. 16 (3), pp. 542-558. https://doi.org/10.1348/135910710X529278
Intergenerational practice in the community: A focused ethnographic evaluation
Alcock, C., Camic, P., Barker, C., Haridi, C. and Raven, R. 2011. Intergenerational practice in the community: A focused ethnographic evaluation. Journal of Community & Applied Social Psychology. 21 (5), pp. 419-432. https://doi.org/10.1002/casp.1084
Assemblage as Rorschach: empirical hermeneutic aesthetics and the art spectator
Camic, P. 2004. Assemblage as Rorschach: empirical hermeneutic aesthetics and the art spectator. in: Frois, J., Andrade, P. and Marques, J. (ed.) Art and Science Lisbon, Portugal Gulbenkian Foundation.
Gastrointestinal evaluation & treatment in psychology
Camic, P. and Gaugh, L. 2004. Gastrointestinal evaluation & treatment in psychology. in: Camic, P. and Knight, S. (ed.) Clinical Handbook of Health Psychology: A practical guide to effective interventions Cambridge, MA, USA Hogrefe & Huber.
Qualitative analysis of experience: grounded theory and case studies
Chamberlain, K., Camic, P. and Yardley, L. 2003. Qualitative analysis of experience: grounded theory and case studies. in: Marks, D. and Yardley, L. (ed.) Research Methods for Clinical and Health Psychology London, UK SAGE Publications Ltd. pp. 69-89
Creating images, sound, movement, enactment, word: the arts in clinical training
Camic, P. 2001. Creating images, sound, movement, enactment, word: the arts in clinical training. Bulletin of Psychology and the Arts. 2.
Building and blending: Creating places for the arts in psychotherapy
Camic, P. 2001. Building and blending: Creating places for the arts in psychotherapy. Bulletin of Psychology and the Arts. 2.
Incorporating the arts into graduate training programs in clinical psychology and medicine
Camic, P. 2000. Incorporating the arts into graduate training programs in clinical psychology and medicine.
Clinical training and the arts
Camic, P. 1999. Clinical training and the arts. Psychology and The Arts.
More than words: making use of the arts in clinical and counseling psychology training
Camic, P. 2007. More than words: making use of the arts in clinical and counseling psychology training. in: Serlin, I. (ed.) Whole Person Healthcare: The Arts and Health London Praeger. pp. 259-282
Blending and bending paradigms in large scale multi-site educational research
Camic, P. and Rhodes, J. 2003. Blending and bending paradigms in large scale multi-site educational research.
Clinical training in applied psychology and the Arts: New possibilities for evidence-based practice
Camic, P. 2007. Clinical training in applied psychology and the Arts: New possibilities for evidence-based practice. The California Psychologist. 40 (6), pp. 9-11.
Referrers' views of a psychological therapies service
Binks, C., Jones, F. and Camic, P. 2009. Referrers' views of a psychological therapies service. Clincial Psychology Forum. 200, pp. 18-23.
How people with psychosis positively contribute to their family: a grounded theory analysis
Coldwell, J., Meddings, S. and Camic, P. 2011. How people with psychosis positively contribute to their family: a grounded theory analysis. Journal of Family Therapy. 33 (3), pp. 353-371. https://doi.org/10.1111/j.1467-6427.2010.00513.x
Young offenders' experiences of traumatic life events: a qualitative investigation.
Paton, J., Crouch, W. and Camic, P. 2009. Young offenders' experiences of traumatic life events: a qualitative investigation. Clinical Child Psychology and Psychiatry. 14 (1), pp. 43-62. https://doi.org/10.1177/1359104508100135
Participant experiences of a mindfulness-based cognitive therapy group for cardiac rehabilitation
Griffiths, K., Camic, P. and Hutton, J. 2009. Participant experiences of a mindfulness-based cognitive therapy group for cardiac rehabilitation. Journal of Health Psychology. 14 (5), pp. 675-681. https://doi.org/10.1177/1359105309104911
Improving middle school climate through teacher-centered change
Rhodes, J., Camic, P., Milburn, M. and Lowe, S. 2009. Improving middle school climate through teacher-centered change. Journal of Community Psychology. 37 (6), pp. 711-724. https://doi.org/10.1002/jcop.20326
From trashed to treasured: a grounded theory analysis of the found object
Camic, P. 2010. From trashed to treasured: a grounded theory analysis of the found object. Psychology of Aesthetics, Creativity, and the Arts. 4 (2), pp. 81-92. https://doi.org/10.1037/a0018429
The use of singing-in-a-group as a response to adverse life events
Von Lob, G., Camic, P. and Clift, S. 2010. The use of singing-in-a-group as a response to adverse life events. International Journal of Mental Health Promotion. 12 (3), pp. 45-53. https://doi.org/10.1080/14623730.2010.9721818
Supportive adult relationships and the academic engagement of Latin American immigrant youth
Green, G., Rhodes, J., Hirsch, A., Suarez-Orozco, C. and Camic, P. 2008. Supportive adult relationships and the academic engagement of Latin American immigrant youth. Journal of School Psychology. 46 (4), pp. 393-412. https://doi.org/10.1016/j.jsp.2007.07.001
Playing in the mud: Health psychology, the arts and creative approaches to health care
Camic, P. 2008. Playing in the mud: Health psychology, the arts and creative approaches to health care. Journal of Health Psychology. 13 (2), pp. 287-298. https://doi.org/10.1177/1359105307086698
Middle school climate examined and altered by teacher-directed intervention assessed through qualitative and quantitative methodologies
Cafasso, L., Camic, P. and Rhodes, J. 2002. Middle school climate examined and altered by teacher-directed intervention assessed through qualitative and quantitative methodologies. Research in Middle level Education. 25 (2), pp. 1-17.
Building bridges between universities and middle schools: A teacher-centred collaboration
Camic, P. 2006. Building bridges between universities and middle schools: A teacher-centred collaboration. Educational and Child Psychology. 23 (1), pp. 42-51.
The arts and global health inequities
Clift, S., Camic, P. and Daykin, N. 2010. The arts and global health inequities. Arts & Health: An International Journal for Research, Policy and Practice. 2 (1), pp. 3-7. https://doi.org/10.1080/17533010903421476
Coming of age for arts and health: what we hope to achieve
Camic, P., Clift, S. and Daykin, N. 2009. Coming of age for arts and health: what we hope to achieve. Arts & Health: An International Journal for Research, Policy and Practice. 1 (1), pp. 3-5. https://doi.org/10.1080/17533010802614627
The state of arts and health in England
Clift, S., Camic, P., Chapman, B., Clayton, G., Daykin, N., Eades, G., Parkinson, C., Secker, J., Stickley, T. and White, M. 2009. The state of arts and health in England. Arts & Health: An International Journal for Research, Policy and Practice. 1 (1), pp. 6-35. https://doi.org/10.1080/17533010802528017
Naming the stars: integrating qualitative methods into psychological research
Camic, P., Rhodes, J. and Yardley, L. 2003. Naming the stars: integrating qualitative methods into psychological research. in: Camic, P., Rhodes, J. and Yardley, L. (ed.) Qualitative Research in Psychology: Expanding Perspectives in Methodology and Design Washington American Psychological Association.
Expanding treatment possibilities for chronic pain through expressive arts therapies
Camic, P. 1999. Expanding treatment possibilities for chronic pain through expressive arts therapies. in: Malchioti, C. (ed.) Medical Art Therapy with Adults London, UK Jessica Kingsley. pp. 43-62