Skip to main content Accessibility help
×
Home
Hostname: page-component-568f69f84b-cgcw8 Total loading time: 0.197 Render date: 2021-09-20T18:38:28.317Z Has data issue: true Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": true, "newCiteModal": false, "newCitedByModal": true, "newEcommerce": true, "newUsageEvents": true }

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia

Published online by Cambridge University Press:  27 August 2020

Emese Csipke*
Affiliation:
Division of Psychiatry, University College London, London, UK
Esme Moniz-Cook
Affiliation:
Faculty of Health Sciences, University of Hull, Hull, UK
Phuong Leung
Affiliation:
Division of Psychiatry, University College London, London, UK
Lauren Yates
Affiliation:
Institute of Mental Health, University of Nottingham, Nottingham, UK
Linda Birt
Affiliation:
Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK
Holly Walton
Affiliation:
Department of Applied Health Research, University College London, London, UK
Eef Hogervorst
Affiliation:
National Centre for Sports and Exercise Medicine, Loughborough University, Loughborough, UK
Gail Mountain
Affiliation:
Centre for Applied Dementia Studies, University of Bradford, Bradford, UK
Georgina Charlesworth
Affiliation:
Clinical Educational and Health Psychology, University College London, London, UK
Martin Orrell
Affiliation:
Institute of Mental Health, University of Nottingham, Nottingham, UK
*Corresponding
Correspondence should be addressed to: Emese Csipke, Division of Psychiatry, 149 Tottenham Court Rd, London W1T7NF, UK. Phone: +44 (0)207 679 9306; Email: e.csipke@ucl.ac.uk.

Abstract

Objectives:

Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this.

Method:

The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators.

Results:

Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators.

Conclusions:

The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

Type
Original Research Article
Copyright
© International Psychogeriatric Association 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Birt, L., Poland, F., Csipke, E. and Charlesworth, G. (2017). Shifting dementia discourses from deficit to active citizenship. Society Health and Illness, 39, 199211.CrossRefGoogle ScholarPubMed
Birt, L. et al. (2019). Maintaining social connections in dementia: a qualitative synthesis. Qualitative Health Research, 30, 2342. doi: 10.1177/1049732319874782 CrossRefGoogle ScholarPubMed
Borschmann, R., Patterson, S., Poovendran, D., Wilson, D. and Weaver, T. (2014). Influences on recruitment to controlled trials in mental health settings in England: a national cross-sectional survey of researchers working for the Mental Health Research Network. Medical Research Methods, 14, 23.CrossRefGoogle ScholarPubMed
Brandt, J. (1991). The Hopkins verbal learning test. Clinical Neuropsychologist, 5, 125142. doi: 10.1080/13854049108403297 CrossRefGoogle Scholar
Brody, E.M., Kleban, M.H., Lawton, M.P. and Silverman, H.A. (1971). Excess disabilities of mentally impaired aged: impact of individualised treatment. Gerontologist, 11, 124133. doi: 10.1093/geront/11.2_Part_1.124 CrossRefGoogle Scholar
Bucks, R.S., Ashworth, D.L, Wilcock, G.K. and Siegfried, K. (1996). Assessment of activities of daily living in dementia: development of the Bristol Activities of Daily Living Scale. Age and Ageing, 5(2), 113120. doi: 10.1093/ageing/25.2.113 CrossRefGoogle Scholar
Burgener, S. C., Buettner, L. L., Beattie, E. and Rose, K. M. (2009). Effectiveness of community-based, nonpharmacological interventions for early-stage dementia: conclusions and recommendations. Journal of Gerontological Nursing, 35, 5057. doi: 10.3928/00989134-20090301-03 CrossRefGoogle ScholarPubMed
Clarke, C. L. et al. (2013). Healthbridge: The National Evaluation of Peer Support Networks and Dementia Advisers in implementation of the National Dementia Strategy for England. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/246406/Demonstrator_Sites_Evaluation_-_Final_Report_Master.pdf; accessed February 26 2019Google Scholar
Coast, J. et al. (2008). Valuing the ICECAP capability index for older people. Social Science and Medicine, 67, 874882. doi: 10.1016/j.socscimed.2008.05.015 CrossRefGoogle ScholarPubMed
Craig, P, et al. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal, 337, a1655. doi: 10.1136/bmj.a1655 CrossRefGoogle ScholarPubMed
Csipke, E. et al. (2018). Promoting Independence in Dementia (PRIDE): protocol for a feasibility trial of the PRIDE intervention for living well with mild dementia. International Journal of Clinical Trials, 5, 177185.CrossRefGoogle Scholar
Department for Constitutional Affairs. (2005). The Mental Capacity Act 2005. http://www.opsi.gov.uk/acts/acts2005/20050009.htm; accessed February 25, 2019.Google Scholar
Department of Health. (2016). Prime Minister’s Challenge on Dementia 2020: Implementation plan. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/507981/PM_Dementia-main_acc.pdf; accessed February 25, 2019.Google Scholar
d’Orsi, E. et al. (2017). Is use of the internet in midlife associated with lower dementia incidence? Results from the English Longitudinal Study of Ageing. Aging and Mental Health, 22, 15251533.CrossRefGoogle ScholarPubMed
Ellwood, A. et al. (2018). Recruiting care homes to a randomised controlled trial. Trials, 19, 535. doi: 10.1186/s13063-018-2915-x CrossRefGoogle ScholarPubMed
EuroQoL Group. (1990). EuroQoL: a new facility for the measurement of health related quality of life. Health Policy, 16, 199208. doi: 10.1016/0168-8510(90)90421-9 CrossRefGoogle Scholar
Hammar, I.O., Ekelund, C., Wilhelmson, K. and Eklund, K. (2014). Impact on participation and autonomy: test of validity and reliability for older persons. Health Psychology and Research, 2, 1825. doi: 10.4081/hpr.2014.1825 Google ScholarPubMed
Hughes, M.E., Waite, L.J., Hawkley, L.C. and Cacioppo, J.T. (2004). A short scale for measuring loneliness in large surveys results from two population-based studies. Research in Aging, 26, 655672. doi: 10.1177/0164027504268574 CrossRefGoogle Scholar
Hyde, M., Wiggins, R.D., Higgs, P. and Blane, D.B. A (2003). Measure of quality of life in early old age: the theory, development, and properties of a needs satisfaction model (CASP-19). Aging Mental Health, 7, 186194. doi: 10.1080/1360786031000101157 CrossRefGoogle Scholar
Jenson, E. A. and Laurie, C. (2016). Doing Real Research: A Practical Guide to Social Research. London: Sage.Google Scholar
Kaur, G., Smyth, R.L. and Williamson, P. (2012). Developing a survey of barriers and facilitators to recruitment in randomized controlled trials. Trials, 13, 218. doi: 10.1186/1745-6215-13-218 CrossRefGoogle ScholarPubMed
Khondoker, M., Rafnsson, S. B., Morris, S., Orrell, M. and Steptoe, A. (2017). Positive and negative experiences of social support and risk of dementia in later life: An investigation using the English Longitudinal Study of Ageing. Journal of Alzheimer’s Disease, 58, 99108.CrossRefGoogle ScholarPubMed
Lion, K.M. et al. (2020). Do people with dementia experience stigma? A cross country comparison between Italy, Poland and the UK. Aging Mental Health, 24(6), 947955.CrossRefGoogle Scholar
Low, L.F., Swaffer, K., McGrath, M. and Brodaty, H. (2018). Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies. International Psychogeriatrics, 30, 807831.CrossRefGoogle ScholarPubMed
Morris, J.C. (1993). The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology, 43, 24122414.CrossRefGoogle ScholarPubMed
Mountain, G., Gossage-Worrall, R., Cattan, M. and Bowling, A. (2017). Only available to a selected few? Is it feasible to rely on a volunteer workforce for complex intervention delivery? Health and Social Care in the Community, 25, 177184. doi: 10.1111/hsc.12285 CrossRefGoogle ScholarPubMed
Nuño, M.M. et al. (2017). Attitudes toward clinical trials across the Alzheimer’s disease spectrum. Alzheimer’s Research and Therapy, 9, 81. doi: 10.1186/s13195-017-0311-5 CrossRefGoogle ScholarPubMed
Podsiadlo, D. and Richardson, S. (1991). The timed” Up & Go”: a test of basic functional mobility for frail elderly persons. Journal of American Geriatric Society, 39, 142. doi: 10.1111/j.1532-5415.1991.tb01616.x CrossRefGoogle Scholar
Rafnsson, S. B. et al. (2017). Loneliness, social integration, and incident dementia over 6 years: prospective findings from the English Longitudinal Study of Ageing. Journal of Gerontology, Series B. doi: 10.1093/geronb/gbx087 Google Scholar
Schuurmans, H. et al. (2005). How to measure self-management abilities in older people by self-report. The development of the SMAS-30. Quality of Life Research, 14, 22152228. doi: 10.1007/s11136-005-8166-9 CrossRefGoogle ScholarPubMed
Shafayat, A. et al. (2019). Promoting Independence in Dementia (PRIDE): protocol for a feasibility randomised controlled trial. Trials, 20, 709. doi: 10.1186/s13063-019-3838-x CrossRefGoogle ScholarPubMed
Smith, S.C. et al. (2005). Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment, 9, 1112.CrossRefGoogle Scholar
Soni, M. et al. (2019). Physical activity pre-and post-dementia: English Longitudinal Study of Ageing. Aging and Mental Health, 23(1), 1521. doi: 10.1080/13607863.2017.1390731 CrossRefGoogle ScholarPubMed
Spector, A., Orrell, M. (2010). Using a biopsychosocial model of dementia as a tool to guide clinical practice. International Psychogeriatrics, 22, 957965. doi: 10.1017/S1041610210000840 CrossRefGoogle ScholarPubMed
Srivastava, A. and Thomson, S. B. (2009). Framework analysis: a qualitative methodology for applied policy research. Journal of Administration and Governance, 4, 7279.Google Scholar
Stock, J., Hogervorst, E., Stevinson, C. and Rahardjo, T. B. (2015). The role of mental health in the relationship between walking and cognitive ability in older adults in Indonesia. Journal of Science and Medicine in Sport, 19, e37e38. doi.:10.1016/j.jsams.2015.12.465 CrossRefGoogle Scholar
Steptoe, A., Breeze, E., Banks, J. and Nazroo, J. (2013). Cohort profile: the English Longitudinal Study of Ageing. International Journal of Epidemiology, 42, 16401648. doi: 10.1093/ije/dys168 CrossRefGoogle ScholarPubMed
Sterin, J. (2002). Essay on a word: a lived experience of Alzheimer’s disease. Dementia, 1, 710.CrossRefGoogle Scholar
Stoner, C.R., Orrell, M., Long, M., Csipke, E. and Spector, A. (2017). The development and preliminary psychometric properties of two positive psychology outcome measures for people with dementia: the PPOM and the EID-Q. BMC Geriatrics, 17, 72. doi: 10.1186/s12877-017-0468-6.CrossRefGoogle ScholarPubMed
Thabane, L. et al. (2010). Tutorial on pilot studies: the what, why and how. BMC Medical Research Method, 10, 1.CrossRefGoogle ScholarPubMed
Vernooij Dassen, M., Moniz-Cook, E., and Jeon, Y-H., (2018). Social Health in dementia: harnessing an applied research agenda International Psychogeriatrics, 30, 775778.CrossRefGoogle ScholarPubMed
Vertesi, A., Lever, J.A, Molloy, D.W., Sanderson, B., Tuttle, I., and Pokoradi, L. (2001). Standardized mini-mental state examination. Use and interpretation. Canadian Family Physician, 47, 20182023.Google ScholarPubMed
Walton, H.J., Spector, A., Williamson, M., Tombor, I. and Michie, S. (2020). Developing quality fidelity and engagement measures fpr complex health interventions. British Journal of Health Psychology, 25, 3960.CrossRefGoogle Scholar
Yates, L., Csipke, E., Moniz-Cook, E. et al. (2019). The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia. Clinical Interventions in Aging, 14, 16151630.CrossRefGoogle ScholarPubMed
3
Cited by

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia
Available formats
×

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia
Available formats
×

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia
Available formats
×
×

Reply to: Submit a response

Please enter your response.

Your details

Please enter a valid email address.

Conflicting interests

Do you have any conflicting interests? *