In the context of a Low and Middle Income Country (LMIC) like India, where an estimated 4.4 million people have dementia, the service gap for diagnosis and treatment exceeds 90% in most parts of the country (Dias & Patel, 2009). Effective interventions that are culturally relevant and feasible to deliver are a high priority for the growing population of the elderly in the country.
Cognitive Stimulation therapy (CST) is an effective intervention for mild to moderate dementia and has shown improvements in cognition and quality of life (Spector et al., 2014). It is also feasible as it does not require any professional mental health expertise or specialist equipment to deliver (Mkenda et al., 2016), which makes it ideal for a low-resource setting like India. The intervention was developed based on the integration of specific therapies used in dementia care such as reminiscence, reality orientation, and cognitive stimulation.
The intervention is tailored to meet the needs of the persons with dementia in person-centered ways. It is delivered in groups twice a week over 14 sessions. The sessions are lead by two facilitators trained in delivering the intervention. Each session has a theme around which engaging and stimulating activities are created. It leaves a lot of room for making the intervention personalized to the group it is delivered to. More than the activities themselves, the focus is on the principles around which CST was created during the training of the facilitators.
The principles make the intervention most effective due to their dementia-friendly approach. For example, one of the principles states that discussions should focus on opinions rather than facts as it allows participants to express themselves freely without having to worry about being “right.” In this way, the intervention becomes a very safe and genuinely engaging environment for participants to exercise their cognitive skills.
Our study aimed to adapt the intervention for use in Chennai, Tamil Nadu. We used the recommended guidelines for adapting the intervention for use in different cultures (Aguirre, Spector, & Orrell, 2014). The process began with inviting a panel of experts and key stakeholders to discuss each aspect of the intervention and coming up with culturally relevant alternatives for parts that require adaptation. An example of some of the activities that required modification included changes to the “Childhood” session suggested by the panel for the study.
One of the recommended activities under this theme was to recreate a childhood bedroom by the person with dementia. However, having a separate bedroom for children is an uncommon arrangement in South Indian households. Hence, this item was replaced with recreating childhood festivals and events. This, together with other changes, was incorporated in the first version of the CST manual following which it was piloted with a group of five individuals with dementia. The feedback from the participants and their caregivers lead to more changes which were incorporated in the second version of the manual. Some changes included removal of the “group song” at the beginning of each session as feedback from the participants suggested that it was too “childish.” This modified version was piloted again and finalized when no further changes were required.
There were some challenges faced in delivering CST in this setting. Language proved to be a barrier sometimes as participants were mostly bi/multi-lingual with different preferences in terms of the dominant language they use. This caused some participants to be left out during parts of the sessions. It was found that care needs to be taken in forming groups that are homogenous in their preferred language. Drop-outs due to failing health, shifting homes or lack of transport was also a hindrance to the group dynamics of the interventions. Facilitator feedback was mostly positive but sought supervision by professionals who were experienced in delivering CST to help resolve conflicts, challenging behavior and other general troubleshooting.
CST was found to be feasible and acceptable to deliver, and feedback from participants was very encouraging. Feedback from caregivers was positive and some also reported subjective improvements in communication, behavior, and socialization. Participants enjoyed the sessions and even requested the duration of the intervention to be extended so that they could spend more time with their newly-found friends. They reported looking forward to the sessions every week, as it is the only time they get to socialize with others in engaging ways.
This study opens up possibilities for CST to be applied to other communities within India and to test its efficacy and effectiveness in Indian cultural and social context. It may prove to be a cost- and resource-efficient intervention for dementia that can hopefully fill the treatment gap that exists in the country.
These findings are described in the article entitled, Cognitive Stimulation Therapy for Dementia: Pilot Studies of Acceptability and Feasibility of Cultural Adaptation for India, recently published in the American Journal of Geriatric Psychiatry. This work was conducted by Shruti Raghuraman from the University of Nottingham, and Monisha Lakshminarayanan, Sridhar Vaitheswaran, and Thara Rangaswamy from the Schizophrenia Research Foundation (India).
References:
- Aguirre, E., Spector, A., & Orrell, M. (2014). Guidelines for adapting cognitive stimulation therapy to other cultures. Clinical Interventions in Aging, 9, 1003–1007. https://www.dovepress.com/guidelines-for-adapting-cognitive-stimulation-therapy-to-other-culture-peer-reviewed-article-CIA
- Dias, A., & Patel, V. (2009). Closing the treatment gap for dementia in India. Indian Journal of Psychiatry, 51 Suppl 1(January), S93–S97.
- Mkenda, S., Olakehinde, O., Mbowe, G., Siwoku, A., Kisoli, A., Paddick, S.-M., … Ogunniyi, A. (2016). Cognitive stimulation therapy as a low-resource intervention for dementia in sub-Saharan Africa (CST-SSA): Adaptation for rural Tanzania and Nigeria. Dementia. https://journals.sagepub.com/action/cookieAbsent
- Spector, A., Thorgrimsen, L., Woods, B. O. B., Royan, L., Davies, S., Butterworth, M., … Terworth, M. B. U. T. (2014). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia : Randomised controlled trial Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia Randomised controlled trial, 248–254. https://linkinghub.elsevier.com/retrieve/pii/S106474811730307X