DESK REVIEWS | 10.03. Are people with dementia involved in the research development process?

DESK REVIEW | 10.03. Are people with dementia involved in the research development process?

It is not a common practice in Brazil, although there are individual initiatives, such as STRiDE, where the involvement of people living with dementia can be attested. However, it is still not an adopted practice among Brazilian research institutions, but specific research initiatives.

No details are available.

There has been no document regulating this. Involvement of people with dementia are mostly as research respondents. Indonesia-specific data on the stigma survey conducted by ADI for the World Alzheimer Report 2019 indicated that there is a higher proportion of healthcare practitioners (65.7%) and general public (44.1%) agreeing that people with dementia are perceived as dangerous. The general public’s perception that people living with dementia are impulsive and unpredictable is also widely spread (74.2% respondents from Indonesia, compared to 63.6% overall global). These might be some of the barriers preventing persons with dementia being involved in research development process (STRiDE, n.d.; Alzheimer’s Disease International, 2019). Based on research published so far on interventions for dementia (e.g., CST, dance therapy), the people with dementia were not involved in the development or design process, but as research participants (Astuti, 2019).

References:

Alzheimer’s Disease International. (2019). World Alzheimer Report 2019: Attitudes to Dementia. Alzheimer’s Disease International.

Astuti, R. D. (2019). Can Bali Become a Paradise For Ageing?

STRiDE. (n.d.). Strengthening responses to dementia in developing countries.

The STRiDE project in Kenya implemented by Africa Mental Health Research and Training Foundation (AMHRTF) and Alzheimer’s and Dementia Organization Kenya (ADOK), is the first to involve people with dementia in the research development process (Breuer et al., 2021; London School of Economics (LSE), 2018).

References:

Breuer, E., Comas-Herrera, A., Freeman, E., Albanese, E., Alladi, S., Amour, R., … Iveth Astudillo García, C. (2021). Beyond the project: Building a strategic theory of change to address dementia care, treatment and support gaps across seven middle-income countries. Dementia. 21(1), 114-135. https://doi.org/10.1177/14713012211029105

London School of Economics (LSE). (2018). Strengthening Responses to Dementia in Developing Countries (STRiDE). https://www.lse.ac.uk/cpec/research/projects/dementia/stride

No, people with dementia are not involved in research. While some studies (clinical and population) on dementia have been developed in Mexico, to our knowledge, none of these have involved people living with dementia in the development of their projects. However, with the STRiDE project, we aim to include them in different activities such as part of our advisory group.

Rarely. The STRiDE project is an example of how persons with dementia are involved in the research development process, for example participating in the project’s Theory of Change workshop and serving on the national advisory committees across the 7 STRIDE participating countries (including South Africa).

Moreover, investigational pharmaceutical trials for dementia are available in South Africa, as all clinical trials in South Africa listed as follows: AD and dementia listed under ‘behaviours and mental disorders’ and List of pharmaceutical trials in South Africa on Alzheimer’s (2008-2019): http://www.sanctr.gov.za/SAClinicalTrials/tabid/169/Default.aspx.