Exploring the feasibility of an individual cognitive stimulation therapy application and related technology for use by people with dementia and carers in Indonesia: A mixed-method study

Dementia ◽  
2021 ◽  
pp. 147130122110180
Author(s):  
Harleen Kaur Rai ◽  
Virginia Geraldine Hanny Prasetya ◽  
Tara Puspitarini Sani ◽  
Imelda Theresia ◽  
Patricia Tumbelaka ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Low Cost ◽  
Cognitive Stimulation ◽  
Family Carers ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Attitudes Towards Technology ◽  
Expert Meeting ◽  
Mental Stimulation ◽  
Home Care Workers

Background Cognitive stimulation therapy (CST) is a psychosocial intervention for people with dementia and can benefit cognition and quality of life. A touch-screen individualised CST (iCST) application has been developed to improve on accessibility and provide increased interactivity. This study aimed to explore the attitudes of people with dementia, carers and healthcare professionals in Indonesia towards the iCST application and related technology. Methods Four focus groups were organised: one comprising family carers ( n = 3), two comprising people with dementia and family carers ( n = 12) and one made up of family carers and home care workers ( n = 3). Participants discussed the uses of technology, tried out the iCST application and completed a usability and acceptability questionnaire. Furthermore, 21 healthcare professionals attended an expert meeting to discuss the potential of implementing the iCST application in the community. Results Attitudes towards technology were positive but lack of experience, difficulties with operating devices and a limited infrastructure to support technology were described as barriers. The iCST application was seen as an interesting tool to support mental stimulation. Compared with people with dementia, carers were more willing to use the application and rated its usability higher. Healthcare professionals were positive about the interactive features of the application and judged that it could be useful within the family context. Discussion Low-cost and low-infrastructure technology like iCST can meet the needs for stimulation of people with dementia in Indonesia and other countries. By understanding the attitudes of people with dementia and carers towards IT and their willingness to adopt technology like the iCST application, we are better placed to overcome potential obstacles to its implementation. It appears that systemic changes are needed to facilitate wider use of IT particularly in dementia care. These include needs to empower end users, strengthen access and connectivity to technology, and improve diagnostic support.

Service users’ involvement in the development of a maintenance cognitive stimulation therapy (CST) programme: A comparison of the views of people with dementia, staff and family carers

Dementia ◽  
2011 ◽  
Vol 10 (4) ◽  
pp. 459-473 ◽  
Author(s):  
Elisa Aguirre ◽  
Aimee Spector ◽  
Amy Streater ◽  
Karen Burnell ◽  
Martin Orrell
Keyword(s):  
Focus Groups ◽  
Controlled Trial ◽  
Real Life ◽  
Cognitive Stimulation ◽  
Family Carers ◽  
User Perceptions ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Group Programme

This study reports on the process of developing a maintenance programme manual following the Medical Research Council guidelines representing the ‘phase I’ or modelling. This study uses an inductive thematic analysis approach to examine user perceptions on the maintenance cognitive stimulation therapy (CST) programme. Three focus groups were carried out with people with dementia, three with staff, and three with family carers of people with dementia. In total 17 people with dementia, 13 staff and 18 family carers took part in separate focus groups. The main findings from the user focus clearly supports the recent draft NICE guidelines on dementia (NICE‐SCIE, 2006) that states that all people with mild/moderate dementia should be ‘given the opportunity to participate in a structured group of cognitive stimulation programme’. People with dementia highly valued the opportunity to take part in a mental stimulating group programme and found it vital in keeping them healthy and active. Most family carers and staff were very positive but expressed concerns about the effectiveness of this type of programme and gave real life examples where the idea of ‘use it or lose it’ did not apply. Results from the focus groups will be used in order to produce a new version of the maintenance CST draft manual and this will be evaluated in a large randomized controlled trial (RCT).

scholarly journals An Individual Cognitive Stimulation Therapy App for People With Dementia: Development and Usability Study of Thinkability (Preprint)

2019 ◽  
Author(s):  
Harleen Kaur Rai ◽  
Justine Schneider ◽  
Martin Orrell
Keyword(s):  
Public Involvement ◽  
Technology Development ◽  
Complex Interventions ◽  
Cognitive Stimulation ◽  
Feasibility Trial ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Mental Stimulation ◽  
Agile Approach ◽  
Individual Cognitive Stimulation Therapy

BACKGROUND There is a lack of technological resources for the mental stimulation and communication of people with dementia, which can be helpful in improving cognition and quality of life. Paper-based individual cognitive stimulation therapy (iCST) for people with dementia has the potential to be adapted to a touchscreen format. This can improve accessibility and provide mental stimulation using interactive features. There is a need for a rigorous and systematic approach toward development, leading to improved suitability and implementation of the intervention, so that more people can benefit from its use. OBJECTIVE This study aims to develop and investigate the usability of Thinkability, an iCST app that can be used by people with dementia and carers on touchscreen tablets. METHODS The Medical Research Council framework for evaluating complex interventions and the Centre for eHealth Research roadmap served as frameworks for the stages of intervention and technology development. The development of the iCST app itself adopted an agile approach with elements from action research. Hence, it was developed in 3 successive <i>sprints</i> and was evaluated by relevant stakeholders at each sprint. Sprint 1 included 2 patient and public involvement (PPI) consultation meetings, sprint 2 included 1 PPI consultation meeting, and 4 focus groups and 10 individual interviews were organized in sprint 3. A feasibility trial is currently underway. RESULTS The findings from each sprint were used to inform the development. Sprint 1 helped to identify the relevant evidence base and explored the attitudes of people with dementia and carers toward a potential iCST app. In sprint 2, an initial prototype was evaluated in a small PPI consultation meeting. In sprint 3, feedback was gathered through a qualitative study on the quality and perceived effectiveness of the iCST app. It was well received by people with dementia and carers. A need for more updated and personalized content was highlighted. CONCLUSIONS This study proves that an agile approach toward technology development involving all relevant stakeholders is effective in creating suitable technology. Adding to our previous knowledge of noncomputerized cognitive stimulation therapy, the release of the iCST app will make this psychosocial intervention accessible to more users worldwide.

scholarly journals An Individual Cognitive Stimulation Therapy App for People With Dementia: Development and Usability Study of Thinkability

JMIR Aging ◽  
10.2196/17105 ◽  
2020 ◽  
Vol 3 (2) ◽  
pp. e17105
Author(s):  
Harleen Kaur Rai ◽  
Justine Schneider ◽  
Martin Orrell
Keyword(s):  
Public Involvement ◽  
Technology Development ◽  
Complex Interventions ◽  
Cognitive Stimulation ◽  
Feasibility Trial ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Mental Stimulation ◽  
Agile Approach ◽  
Individual Cognitive Stimulation Therapy

Background There is a lack of technological resources for the mental stimulation and communication of people with dementia, which can be helpful in improving cognition and quality of life. Paper-based individual cognitive stimulation therapy (iCST) for people with dementia has the potential to be adapted to a touchscreen format. This can improve accessibility and provide mental stimulation using interactive features. There is a need for a rigorous and systematic approach toward development, leading to improved suitability and implementation of the intervention, so that more people can benefit from its use. Objective This study aims to develop and investigate the usability of Thinkability, an iCST app that can be used by people with dementia and carers on touchscreen tablets. Methods The Medical Research Council framework for evaluating complex interventions and the Centre for eHealth Research roadmap served as frameworks for the stages of intervention and technology development. The development of the iCST app itself adopted an agile approach with elements from action research. Hence, it was developed in 3 successive sprints and was evaluated by relevant stakeholders at each sprint. Sprint 1 included 2 patient and public involvement (PPI) consultation meetings, sprint 2 included 1 PPI consultation meeting, and 4 focus groups and 10 individual interviews were organized in sprint 3. A feasibility trial is currently underway. Results The findings from each sprint were used to inform the development. Sprint 1 helped to identify the relevant evidence base and explored the attitudes of people with dementia and carers toward a potential iCST app. In sprint 2, an initial prototype was evaluated in a small PPI consultation meeting. In sprint 3, feedback was gathered through a qualitative study on the quality and perceived effectiveness of the iCST app. It was well received by people with dementia and carers. A need for more updated and personalized content was highlighted. Conclusions This study proves that an agile approach toward technology development involving all relevant stakeholders is effective in creating suitable technology. Adding to our previous knowledge of noncomputerized cognitive stimulation therapy, the release of the iCST app will make this psychosocial intervention accessible to more users worldwide.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

scholarly journals An evaluation of Cognitive Stimulation Therapy sessions for people with dementia and a concomitant support group for their carers

Dementia ◽  
2016 ◽  
Vol 16 (8) ◽  
pp. 985-1003 ◽  
Author(s):  
Jan Bailey ◽  
Paul Kingston ◽  
Simon Alford ◽  
Louise Taylor ◽  
Edward Tolhurst
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Qualitative Data ◽  
Cognitive Stimulation ◽  
Structured Interviews ◽  
Post Intervention ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Quasi Experimental ◽  
The Impact

This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.

scholarly journals Cognitive stimulation therapy in dementia care: exploring the views and experiences of service providers on the barriers and facilitators to implementation in practice using Normalization Process Theory

2017 ◽  
Vol 29 (11) ◽  
pp. 1869-1878 ◽  
Author(s):  
Claire Dickinson ◽  
Grant Gibson ◽  
Zoe Gotts ◽  
Lynne Stobbart ◽  
Louise Robinson
Keyword(s):  
Psychosocial Intervention ◽  
Cost Effective ◽  
Dementia Care ◽  
Normalization Process Theory ◽  
Cognitive Stimulation ◽  
Process Theory ◽  
Evidence Based ◽  
Cognitive Stimulation Therapy ◽  
People With Dementia ◽  
Normalization Process

ABSTRACTBackground:Cognitive stimulation therapy (CST) is an evidence-based, cost-effective psychosocial intervention for people with dementia but is currently not a standard part of post-diagnostic care. This qualitative study explored the views and experiences of dementia care providers on the barriers and facilitators to its implementation in usual care.Method:Thirty four semi-structured interviews (24 participants) were conducted across four dementia care sites in the North of England; ten were follow-up interviews. Data were analyzed using thematic analysis and then mapped to the Normalization Process Theory framework.Results:Participants considered CST a “good fit” with their “preferred” ways of working and goals of dementia care namely the provision of person-centered services. For facilitators delivering the intervention, compared to other behavioral interventions, CST was seen to offer benefits to their work and was easy to understand as an intervention. Training in CST and seeing benefits for clients were important motivators. Time and resources were crucial for the successful implementation of CST. Participants were keen to objectively measure benefits to participants but unsure how to do this.Conclusions:CST is a cost-effective psychosocial intervention for people with dementia, recommended by national guidance. Despite our findings which show that, using the NPT framework, there are more facilitators than barriers to the implementation of CST, it is still not a standard part of post-diagnostic dementia care. Further research is needed to explore the reasons for this implementation gap in ensuring evidence-based care in translated into practice.

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