Effectiveness of a Dementia Anti-Stigma Intervention in Rural Kenya
Phase: NA
Conditions: Dementia
Sponsor: Africa Institute of Mental and Brain Health (AFRIMEB)

Cover page 
 
 
Effectiveness of a dementia anti-stigma 
intervention in rural Kenya 
 
NCT number – Not yet assigned 
 
16th October 2024 
 

Effectiveness of a dementia anti-stigma 
intervention in rural Kenya 
FUNDING AGENCY: Alzheimer’s Association 
INVESTIGATORS, QUALIFICATIONS AND INSTITUTIONAL AFFILIATIONS 
Name 
Qualification 
Institution 
Role 
Dr. Christine 
Musyimi 
PhD 
Africa Institute of Mental and 
Brain Health (AFRIMEB), 
Kenya 
Principal Investigator 
Dr. Nicolas 
Farina 
PhD 
University of Plymouth, UK 
 
Co-Investigator/Mentor 
 
ROLE OF INVESTIGATORS AND COLLABORATORS 
1. Dr Christine Musyimi will support research activities and will be responsible for project staff 
training, conduct workshops, preliminary data analysis, manuscript preparation, report writing 
and data presentation/dissemination meetings at local, national, and international meetings 
under the guidance of her mentor. 
2. Dr Nicolas Farina will provide expert opinions into the evaluation of the implementation 
program. He is also a mixed methods researcher, understanding the value of both quantitative 
and qualitative data. He will also have bi-weekly meetings with Dr. Musyimi with a focus on 
achieving training and research objectives; developing collaborations and networks; discussing 
interpretation of findings; and checking-in about progress on publications, conference 
presentations, and future grant proposals. 
 

Table of Contents 
Table of Contents ...........................................................................................................................3 
ABSTRACT ....................................................................................................................................4 
BACKGROUND ............................................................................................................................4 
AIMS ...............................................................................................................................................6 
METHODS .....................................................................................................................................6 
ETHICAL CONSIDERATIONS ................................................................................................12 
ANTICIPATED CHALLENGES AND SOLUTIONS .............................................................12 
TIMELINE ...................................................................................................................................13 
BUDGET .......................................................................................................................................14 
REFERENCES .............................................................................................................................15 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

ABSTRACT 
Stigma underlies many health disparities in Kenya, and dementia-related stigma is no different. 
Preliminary evidence highlights the short-term benefits of a dementia anti-stigma intervention in 
Kenya. We aim to ascertain the long-term effectiveness of a locally developed dementia anti-
stigma intervention in order to establish a community resource that will improve dementia 
understanding, reduce stigma and improve health behaviours. In AIM 1, we will assess what public 
stigma towards people with dementia and their carers looks like in Kenya, through a survey 
(n=600). Individual interviews with 20 members of the general public who completed the survey 
will be conducted to explore what stigmatizing beliefs are held and why they form. Triangulation 
techniques will then be used to integrate quantitative and qualitative data. Reflecting on AIM 1 
findings, we will engage 20 key stakeholders to refine an existing anti-stigma intervention, to 
better target culturally specific misconceptions and negative beliefs about dementia (AIM2). In 
AIM 3, we will determine the effectiveness of the intervention among members of the general 
public (n=184), through a stepped wedge cluster randomized trial (SWT).  Given the expected 
increase in the number of people with dementia by 2050, approaches that raise awareness will 
provide a route to improve the lives of 100,000s of people with dementia in Kenya by tackling 
stigma. Ultimately, the findings will contribute to understanding dementia-related stigma in 
Kenya, how to reduce it, and ultimately provide mechanisms to minimize health inequality. 
BACKGROUND 
Public stigma is a type of stigma in which the general public are the perpetrators. This type of 
stigma manifests in various ways, including discrimination, prejudice, and social exclusion. When 
people with dementia are subjected to public stigma, it can lead to severe consequences such as 
isolation and neglect. Furthermore, public stigma can influence health-seeking behaviors, as 
people with dementia may delay or avoid seeking help due to fear of judgment or rejection by 
others. In addition to public stigma, people with dementia and their carers may also experience 
other types of stigma including stigma by association (e.g., stigma attached to those associated 
with the person with dementia such as a carer) and self-stigma (e.g., people with dementia 
internalising public stigma) (1). Dementia stigma negatively affects the health and quality of life 
of those living with the condition and their carers (2). The burden of stigma extends to caregivers, 
who may experience stress, anxiety, and a sense of isolation as a result of the negative attitudes 
and discrimination they encounter. The symptoms of dementia and the stigma associated with it 

are perceived and understood differently across various cultures and regions of the world (3). These 
differences in understanding can influence how dementia is diagnosed, treated, and managed, as 
well as how those living with the condition and their caregivers are supported by their 
communities. 
In Sub-Saharan Africa, limited research has revealed that different causal attributions for dementia 
are held by people including biological, psychological and spiritual (4). Among these, 
psychosocial explanations are the most commonly held while biological explanations are less 
frequently considered (4). In many communities within the Sub-Saharan Africa, dementia is 
considered normal part of ageing, which often leads to the underdiagnosis and undertreatment of 
dementia, as symptoms may be dismissed as merely signs of growing older. Additionally, dementia 
is sometimes linked to stigmatizing beliefs, including association with witchcraft (5). These 
stigmatizing beliefs were often used when knowledge about medical conditions were uncommon 
and strange behaviours associated with dementia were interpreted as dangerous and caused by evil 
spirits (4–6), resulting in inconsistent health seeking behaviour (7). Beliefs, knowledge and 
attitudes towards people living with dementia and their families are therefore important areas of 
investigation in understanding the manifestations of public stigma.  
In Kenya, where cultural beliefs and misconceptions significantly shape public perceptions of the 
dementia, there is limited scientific evidence on the perceptions of the disease including stigma. 
However, much of the evidence is derived from small sample qualitative research (8,9). 
Additionally, there is lack of contextually appropriate interventions that address the unique socio-
cultural dynamics at play in Kenya, such as beliefs in witchcraft, which are often linked to 
dementia symptoms. To develop effective, tailored interventions, it is important for us to 
understand “who” and “what” we should target (10). For this to happen, we need to generate 
representative data about what dementia stigma looks like in Kenya, and to understand who is 
likely to hold these beliefs (AIM 1). These findings will be fed into the existing dementia anti-
stigma intervention, to better tailor it to the needs of the Kenyan people (AIM 2). Most anti-stigma 
interventions have been developed and tested in high income countries (10). We have preliminary 
evidence demonstrating the short-term effects of a culture-specific dementia anti-stigma 
intervention developed from the ground up in Kenya by the investigators. We will use a longer 
follow-up that will allow confirmation of continuity of initial gains from the intervention (11,12) 
and to better establish whether behavioral changes occur (AIM 3).  
 

AIMS 
Overall aim 
The overarching aim of this research is to refine and evaluate a dementia stigma reduction 
intervention tailored to meet the needs of people in Kenya, in preparation for future 
implementation and adoption within existing policies.  
Specific objectives 
We will achieve this through the following three specific aims. 
i) AIM 1: To adapt dementia-related knowledge and attitudes tools and develop a 
representative dementia stigma profile of the general public in Kenya. 
ii) AIM 2: To refine an existing anti-stigma intervention to better target culturally specific 
misconceptions and negative beliefs about dementia. 
iii) AIM 3: To determine the effectiveness of the anti-stigma intervention through a stepped 
wedge cluster randomized trial (SWT) among members of the general public. 
METHODS 
Study site: Makueni County in rural Kenya 
AIM 1: Adapting a dementia-related knowledge and attitudes tools and developing a 
representative dementia stigma profile of the general public in Kenya 
We will conduct a survey of 600 adults (18 years and older) in Makueni County, a rural setting in 
Kenya. Individuals in rural communities have higher rates of dementia, experience more health 
disparities and additional challenges with cultural belief systems, and utilization of care compared 
to their urban counterparts (13). Participants will be recruited from three geographically defined 
areas served by six Community Health Workers (CHWs), and ensure a diverse demographic profile 
based on age, sex and socio-economic status. The three geographically selected rural areas are 
representative of other rural regions in Kenya due to their similar settings. Participants will 
complete measures of knowledge (Dementia Knowledge Assessment Scale (DKAS)) (12) and 
attitudes (Dementia Attitudes Scale (DAS)) (14). DKAS is a reliable and valid tool for assessing 
dementia knowledge across a range of participants including members of the general public 
(15)(16). It has been used among older adults in Africa (17). DAS is based on the tripartite model 
of attitude (18), has been validated for members of the general public and has a high Cronbach’s 
alpha coefficient ranging from 0.83 to 0.85 (19). To ensure that the measures are suitable for use 

within Kenya, they will undergo cross-cultural adaptation (forward and backward translations will 
be conducted, inconsistencies checked, and then pilot tested (n=24 general public members). Up 
to twenty individual interviews will also be held with a convenient sample of members of the 
general public who completed the survey to better explore what stigmatizing beliefs are held in 
the communities and why they form.  
Recruitment and approach: Members of the general public (n=24 for piloting the study tools and 
procedures) and (n=600 participants who will be recruited for the main study), aged 18 years and 
above will be recruited by the CHWs. All participants will need to speak the local language 
(Kamba) and have capacity to consent. There are no other exclusion criteria. Households will be 
approached (i.e., door knocking) upon a convenience basis in the first instance, within geographic 
regions that the CHWs serve. CHWs will ensure that there is equal representation based on age, 
sex and socioeconomic status. CHWs will be familiar with the demographics of participants that 
reside in the local community.  All participants will provide either written/thumb print informed 
consent. We will liaise with the CHWs on a weekly basis to reflect on the recruitment progress, 
but also to identify underrepresented groups. Door knocking benefits from minimizing sources of 
bias that might occur through other channels (e.g., social media), who reflect certain 
demographics. We will however be vigilant that door knocking during the day may lead to an 
under-representation of working population (e.g., younger, males). In instances within a household 
where an underrepresented group resides but not present during the initial visit, CHWs will 
reorganize the visit for a time and date convenient for the potential participant. Guided by the need 
to achieve thematic saturation, up to 20 members of the general public who completed the survey 
will also be identified by CHWs through convenience sampling based on their availability, to better 
explore what stigmatizing beliefs are held in the communities and why they form. 
Analysis plan and sample size: Descriptive data will be reported to identify misconceptions and 
common beliefs within the sample. Regression models will be developed to identify what factors 
are associated with stigma. To detect a small effect size (f2=0.04) and enter 20 predictors in the 
model (Power =0.8, alpha = 0.05), accounting for 10% missing data, a sample size of 600 is 
required. Inductive thematic analysis will be used for the qualitative interviews. We will recruit 
participants until thematic saturation is achieved (i.e., until no new themes are inductively 
identified). Thematic saturation typically occurs between 9 and 17 participants (20). Triangulation 
techniques will be used to integrate quantitative and qualitative data.  

Outcomes: 
1) Cross-culturally adapt the questionnaires for use in Kenya, 2) generate summary report of 
findings, and 3) academic publication. 
AIM 2: Refining an existing anti-stigma intervention to better target culturally-specific 
misconceptions and negative beliefs about dementia- (AIM 2). 
A consortium of the 20 key stakeholders (people with dementia, carers, clinicians, policy makers, 
academicians and researchers) will be gathered to review the summary report comprising of AIM 
1 findings, which will help to identify stigma drivers and target common culturally specific 
misconceptions and negative beliefs about dementia. Their distribution will be purposive, based 
on the relevance of stakeholders to the research objectives. This will be discussed alongside the 
existing intervention to identify any gaps, or whether further refinement of the content is required. 
The existing intervention is a train-a-trainer programme (21) contextually developed, for delivery 
(via demonstrations and role-plays) by lay providers such as community health workers (22). It is 
delivered bi-weekly in a group setting and each session ranges between 1.5 to 2 hours. The co-
development of the intervention followed the Medical Research Council framework for 
development of complex interventions comprising of four phases (23). In each phase, key 
considerations were made such as relevant stakeholder engagement throughout the development 
process and dynamic iterative processes to intervention development (24). Co-development 
stakeholders included carers of persons with dementia, members of the general public, clinicians, 
community health workers, community leaders, researchers and academicians. 
Intervention content (figure on the right): This includes four sessions that promote: (i) 
understanding of dementia, (ii) demystifying myths and misconceptions, (iii) empathetic 
connections using videos of people with dementia and carers (virtual social contact) and (iv) social 
inclusion through a case vignette and 
discussions. The intervention was well 
received amongst 59 participants, with 
positive feedback particularly in terms of 
its format and accessibility. There were 
no dropouts. At one month post 
intervention delivery, positive effects 
among members of the general public 

were reported with modest effects in reducing negative beliefs related to treatment (η2 =0.34), 
living well with dementia (η2 =0.98) and care (η2 =0.56). Knowledge surrounding causal 
attribution did not significantly change following the intervention and lack of family support was 
still considered a cause of dementia. The small sample size, lack of a control arm and very short 
follow-up (one month) in the initial testing of the intervention restricts our ability to conclude 
effectiveness and our ability to report on the continuity of any initial gains from the intervention. 
Therefore, the proposed research will allow for effectiveness testing in a suitably designed and 
powered study.  
Recruitment: From the list of 20 stakeholders, persons with lived experience will be recruited 
from Alzheimer’s Dementia Organization, Kenya. We will draw on our established networks of 
collaborators to identify the other stakeholders for the refinement process. 
Analysis plan: No defined analysis plan. Instead, the refinement process will be described through 
detailing the context of the meeting, meeting minutes, and action points. A full list of refinement 
recommendations alongside a rationale about why they were/were not adopted will be described.  
AIM 2 outcomes  
1) Deliver a consensus workshop to reflect on the findings from AIM 1 and existing content within 
the anti-stigma intervention, and 2) Publish a summary of the consortium and actions taken. 
AIM 3: Determining the effectiveness of the anti-stigma intervention through a stepped 
wedge cluster randomized trial (SWT) among members of the general public 
This will involve sequential delivery of the intervention to six community-level groups from one 
site at a time, until all the three sites are exposed to the intervention (n=184). Using participants 
surveyed in AIM 1, six randomly selected community- level groups consisting of 10-12 members 
from each of the three geographically defined areas (sites) will be randomly allocated to start on 
one of three dates (three months apart). Randomization to receive the intervention will be 
conducted by a blinded independent researcher. Participants will be blinded to allocation while the 
research assistant will be blinded to the schedule of intervention delivery. Following the listing of 
the 600 assessed participants, sites will be block randomized into six community-level groups 
(clusters), then randomly ordered to receive the intervention. Cluster randomization will reduce 
contamination before the intervention phase, expected to be seen at an individual level. Although 
all groups will start with a three-month “control condition”, six groups from each site will receive 
the intervention after every three months. With the three-month interval, the rollout program is 

expected to take about 12 months. The SWT design ensures that all clusters receive the intervention 
rather than entirely denying benefits to control groups, since there is evidence that the proposed 
intervention has a short-term positive effect in a context that lacks implementation of evidence-
based dementia anti-stigma interventions. Stigma-related outcome data will therefore be collected 
at baseline (three months before being exposed to the four-session group awareness program), 
switch points (rollout period during which the clusters will cross over from the control phase), 6- 
and 12-months post two-week intervention. The primary outcomes will be the dementia attitudes 
(DAS)8 and dementia knowledge (DKAS)6. Secondary outcomes will include intervention 
acceptability, dementia engagement (behaviour).  
Recruitment and retention: Members of the general public (n=184) will be selected from the 
participants identified in AIM 1. As such, all participants will be aged 18 years and older, able to 
speak Kamba and have capacity to consent. All participants will have been given the option to 
participate in the anti-stigma intervention in AIM 1. If there are more than 184 participants (from 
AIM 1) who have consented to be contacted about the anti-stigma intervention, all potential 
participants will be randomly listed within each village site. Then from this list, six sets of 10-12 
members will be randomly selected and randomly allocated to start on one of three dates (three 
months apart). Similar to the previous testing phase of the intervention, CHWs who are proximal 
will be paired to facilitate sessions. Separate informed consent will be obtained from participants 
for this AIM. For individuals who refuse to participate, the next person from the randomized list 
will be selected. Using AIM 1 as a means to list for AIM 3 will help identify potential sources of 
recruitment bias in the sample. Retention: We acknowledge that retaining participants throughout 
the study duration is important. This can be particularly challenging with: (i) people with dementia 
and carers because of emotional changes due to the condition or caring role, and (ii) Other 
members of the general public due to busy schedules. Nevertheless, CHWs will be trained to assess 
willingness to participate, address any challenges and describe the importance and purpose of the 
study. The six CHWs will also be available to ensure assessments are conducted at a day and time 
convenient to the participants. 
Leveraging existing resources, Community Health Workers (CHWs): CHWs are county 
employed volunteers who are funded through hybrid public/private reward scheme. They deliver 
services such as making home visits, providing health promotion messages, treating common 
ailments and illnesses, within a defined geographical area. CHWs are typically given monetary 

incentives by the public sector based on commitment while private institutions are encouraged to 
support existing committed CHWs with transport reimbursements while conducting household 
visits to improve motivation and performance. Within Kenya, the adoption of CHWs to facilitate 
health related research and outreach is commonplace and is of great success (e.g., recruiting more 
than 500 participants/month). As part of the Strengthening Responses to Dementia in Developing 
Countries (STRiDE) project, six CHWs have already received training about dementia as part of 
the initial anti- stigma intervention testing. As such, the CHWs will receive refresher training to 
enable them to deliver the intervention to newer groups other than those in the initial phase of 
testing the intervention. The aim is to better establish whether behavioral changes occur in the 
long-term and establish continuity of initial gains for participants receiving the intervention at 
different times. Retention: To enhance recruitment, retention and performance, CHWs will receive 
branded uniforms (thus increasing project visibility, supported by word of mouth), and transport 
reimbursement based on the number of participants assessed. 
Sample size: The sample size was estimated using the stepped wedge cluster randomized design 
package (swCRTdesign) in RShiny app, under a linear mixed-effects model (25). Assuming an 
alpha error of 0.05 and a power of 0.9, it was estimated that a four-step design, using a maximum 
of 12 subjects per cluster and with 6 clusters per sequence, a total of 154 participants will be 
required to detect a significant mean difference of 0.3. While accounting for 20% loss to follow-
up, we expect a final sample of 184 participants.  
AIM 3 outcomes: 1) report the change in dementia-related knowledge and attitudes at 6-and 12 
months after receiving the intervention. 2) report the behavioural changes that occurred at 6- and 
12 months after receiving the intervention.  
Analysis plan: Statistical analyses will be performed using R v4.2.2 based on participant level 
data, clustered within sites. Descriptive analyses of the socio demographic characteristics and 
dementia-related knowledge and attitudes of the groups will be performed at baseline to assess 
cluster variation. A generalized linear mixed model will be used to adjust for time-specific 
confounding and intra-cluster correlations, and model time and intervention effects as fixed effects. 
An intention to treat approach will ensure that all participants randomized and receiving baseline 
assessments are included in the analysis. 

ETHICAL CONSIDERATIONS 
Ethical approval will be obtained from the Maseno University Ethics Review Committee 
(MUERC) and a research permit sought from the National Commission for Science, Technology, 
and Innovation (NACOSTI). We will seek informed consent from all participants recruited in the 
study. Participant information sheets and informed consent forms will be written in the local 
language, enabling potential participants to understand the aims, procedures and implications of 
the study, and the nature of participation. Participants will be given a copy of the participant 
information sheet to keep. Only those who consent voluntarily will be invited to proceed with the 
study but with a provision of them to withdraw anytime without any loss of benefits. 
Confidentiality and anonymity of data will be ensured throughout the research process, from data 
collection to data storage, analysis and publication.  
All data collected will be stored in well-organised folders and file names using password-protected 
access at Africa Institute of Mental and Brain Health offices. Audio recordings will be downloaded 
onto password-protected computers. The code sheet to identify participants will be stored 
separately from the data to protect privacy. The data will be cleaned, and all identifiable 
information anonymised before analysis. In the publication or presentation of study results, 
information will never be presented such that a participant could be identified. 
Although the study targets the general public, provisions to protect the rights and welfare of 
individuals with dementia encountered during data collection will be put in place. These include 
training data collectors to recognize and respect the vulnerabilities of individuals with dementia, 
employing appropriate communication techniques to minimize distress, identifying signs of 
discomfort or distress and responding in a sensitive and supportive manner as well as ensuring 
confidentiality through anonymization. 
 
ANTICIPATED CHALLENGES AND SOLUTIONS 
Sequential timeline (All AIMs) 
The AIMs are sequential by design. Delays in ethical approvals or recruitment (etc.) within AIM 
1, will result in delays in the AIMs 2 and 3. Realistic timeframes have been put together, with 
contingency time embedded.  
  
 

Recruitment (AIMs 1 and 3) 
There may be difficulties reaching recruitment targets. However, the CHWs have previously 
demonstrated the capacity to achieve these figures (3,500 participants in 6 months in an earlier 
household survey). Additional efforts may be needed to be more selective in recruitment strategies 
to ensure that we do have heterogeneity in our sample 
Drop-out (AIM 3) 
The long-term nature of follow-ups are susceptible to drop-out, which could bias our findings. We 
have previous evidence that retention on similar studies is good (3% after one month).  We will 
also adopt appropriate analyses and imputation depending on data missingness (e.g., last 
observation carried forward). 
 
 
TIMELINE 
Table 1: Timeline illustrating the 3-year project milestones 
Milestone 
Description 
Timeline 
  Study Preparation  
Year 1 Year 2 
Year 3 
Approvals and permitting 
Receive ethical approval and amendments (Month 11 (M11)) from the Kenya Medical Research Institute, a research permit 
from the Kenya National Commission on Science, Technology and Innovation (NACOSTI) 
M1-3 
Community entry 
Community entry will be performed and approvals from County and sub-county governments sought 
M4 
AIM 1: Adapt and develop a representative profile of public stigma 
Adaptation of data collection tools 
Forward and backward translation of tools, synthesizing process and discussion of the discrepancies 
M5-6 
Pilot testing the instruments with 24 individuals 
M7 
Qualitative interviews 
20 key informant interviews to explore stigmatizing beliefs among members of the general public 
M8-9 
Conduct a household survey 
Administer measures of knowledge and attitudes to 600 adults (18 years and older) 
 
AIM 2: Refinement of existing anti-stigma intervention 
Consensus workshop  
20 key stakeholders to review the summary report from AIM 1 above 
M10 
AIM 3: Stepped wedge cluster randomized trial (SWT) 
Community Health Workers’ training 
CHWs will receive training on the program and re-training on intervention delivery 
M11 
Outcome assessor training 
A research assistant will be trained to conduct assessments 
M11 
Randomization process 
Sites block randomized into six community-level groups, then randomly ordered to receive the intervention 
M12 
Roll-out sequence (interventions) with 
outcome assessments conducted at 
switch points, 6- and 12-months 
following intervention. 
Site 1 (6 groups) (control condition) 
M1-3 
Site 1 (6 groups) (intervention (Year 2-M4) and assessments) 
M1,4,10 
M4 
Site 2 (6 groups) (intervention (Year 2-M7) and assessments) 
M4,7 
M1,7 
Site 3 (6 groups) (intervention (Year 2-M10) and assessments) 
M7,10 
M4,10 
International travel (conference presentations) 
Conference presentations 
These will be conferences with a focus on dementia e.g., Alzheimer’s Association International Conference 
M7 
M7 
M7 
Report writing 
This will take place at the end of each year 
M12 
M12 
M12 
Data analysis and dissemination 
Final dissemination 
Dissemination of findings to local stakeholders via workshops 
M11 
Data analysis 
Data entry, analysis and manuscript writing 
M5-7 
M8-12 
M1-12 

BUDGET 
Activity 
Cost (USD) 
Personnel Cost 
 
  96,000 
Travel Cost  
 
    7,500 
Other Costs 
 
  96,483.40 
Total 
 
199,983.40 
 
 
 

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INFORMATION SHEET AND CONSENT FOR HOUSEHOLD SURVEYS 
Title: Effectiveness of a dementia anti-stigma intervention in rural Kenya  
 
Principal Investigator: Dr Christine Musyimi, Ph.D, Africa Institute of Mental and Brain Health 
(AFRIMEB) 
 
Co-Investigator: Dr Nicolas Farina, Ph.D, University of Plymouth, UK 
 
Sponsor: Alzheimer’s Association 
 
Study Invitation, Purpose and Location 
You are invited to participate in a research study about dementia related knowledge and attitudes. 
It is up to you to decide if you would like to take part in this study. The purpose of the study is to 
ascertain the long-term effectiveness of a locally developed dementia anti-stigma intervention in 
order to establish a community resource that will improve dementia understanding, reduce stigma 
and improve health behaviours. The study takes place in Makueni County. 
 
Participant Characteristics and Exclusionary Criteria 
You are invited to take part in this study because you are aged 18 years and reside in Makueni 
County. You must be able to participate in the local language (Kamba) and have the capacity to 
consent.  
 
Study Procedures 
If you decide to take part, you will be required to complete a survey lasting between 60-90 minutes 
to obtain information about dementia stigma in Kenya. The survey questions will include questions 
about dementia knowledge and attitudes. This will aid in identifying the stigmatizing beliefs held 
in the communities and why they form. The survey will be facilitated by a staff from Africa 
Institute of Mental and Brain Health.  
 
Study Benefits to the Participants 
This study is not designed to benefit you personally. Completing the survey may give you a 
platform to share your perspective regarding dementia knowledge and attitudes held in your 
community. The information you provide will aid us in shedding more light on how to refine the 
existing dementia anti-stigma intervention, to better tailor it to the needs of the Kenyan people. 
 
Anticipated Risks:  
There is a possibility that participating in this study may make you feel uncomfortable. The 
responses you provide may bring to light dementia knowledge and attitudes within the community 

and will be used to refine existing dementia anti-stigma intervention. There are no unknown risks 
for participation that would occur in typical day-to-day living. 
 
Voluntary Participation and Withdrawal 
Your participation in this study is completely voluntary. However, you do not have to take part in 
this research if you do not wish to do so. If you choose to participate, you are free to withdraw 
your consent and discontinue your participation at any time without your relationship with us being 
affected and without incurring any penalty. 
 
Confidentiality  
We will keep your records private to the extent allowed by law. We will use a study number rather 
than your name on study records. The information you provide will be stored at Africa Institute of 
Mental and Brain Health offices in locked cabinets and on password-protected computers. Audio 
recording will be downloaded onto password-protected computers. The code sheet to identify 
participants will be stored separately from the data to protect privacy. When we present or publish 
the results of this study, we will not use your name or other information that may identify you. 
However, we may share some photos on reports, media, posters and workshops to illustrate the 
activities/work of this project. 
 
Compensation 
You will not be paid to participate in this study. However, your travel costs will be reimbursed.  
 
Contact Information 
If you have any questions, concerns, or complaints about the study please contact me or the PI - 
Dr Christine Musyimi at Africa Institute of Mental and Brain Health on (+254724572202) or the 
Secretary of Maseno University Ethics Review Committee (MUERC) for any questions 
regarding human research rights on Private Bag 40105, Maseno, Kenya, or call on Tel: +254-
057 351 221, or email: muerc-secretariate@maseno.ac.ke 
 
 
 

Statement of Consent 
I have read this consent form and have been given a chance to ask questions. I voluntarily agree to 
participate in this study. 
 
I will receive a signed copy of form for my records. 
 
 
______________________________________________                      ________________ 
Signature of Participant                                                                                    Date 
 
 
 
Name of Participant_________________________________________________________ 
 
 
 
 
Researcher Obtaining Consent ________________________________________________ 
 
 
 
 
Signature of Researcher ____________________________  Date ___________________ 
 
 

INFORMED CONSENT FOR KEY INFORMANT INTERVIEWS 
 
Title: Effectiveness of a dementia anti-stigma intervention in rural Kenya  
 
Principal Investigator: Dr Christine Musyimi, Ph.D, Africa Institute of Mental and Brain Health 
(AFRIMEB) 
 
Co-Investigator: Dr Nicolas Farina, Ph.D, University of Plymouth, UK 
 
Sponsor: Alzheimer’s Association 
 
Purpose: The purpose of the study is to ascertain the long-term effectiveness of a locally developed 
dementia anti-stigma intervention in order to establish a community resource that will improve 
dementia understanding, reduce stigma and improve health behaviours. You are invited to take part 
in this interview because you participated in the survey. During this activity we aim to better 
explore your view concerning stigmatizing beliefs that are held in the communities and why they 
form. 
 
Procedures: If you decide to take part, you will be required to actively participate in a discussion 
lasting between 60-90 minutes. This will aid in identifying the stigmatizing beliefs held in the 
communities and why they form. We will audiotape the interviews to learn as much as we can 
from these discussions. The sessions will be facilitated by staff from Africa Institute of Mental and 
Brain Health.  
 
Benefits: These discussions are not designed to benefit you personally. Talking through the 
interview may give you a platform to share more of your perspective regarding stigmatizing beliefs 
that are held in the communities and why they form. The information provided will also aid in 
shedding more light on how to refine the existing dementia anti-stigma intervention, to better tailor 
it to the needs of the Kenyan people. 
 
Risks: There is the possibility that participation in this study may make you feel uncomfortable. 
The discussions may bring to light stigmatizing beliefs within the community, and why they form. 
However, the responses you give will be used to refine existing dementia anti-stigma intervention.  
 
Voluntary Participation and Withdrawal: Your participation in this study is completely 
voluntary. However, you do not have to take part in this research if you do not wish to do so. If 
you choose to participate, you are free to withdraw your consent and discontinue your participation 
at any time without your relationship with us being affected and without incurring any penalty. 
 
Confidentiality: We will keep your records private to the extent allowed by law. We will use a 
study number rather than your name on study records. The information you provide will be stored 
at Africa Institute of Mental and Brain Health offices in locked cabinets and on password-protected 

computers. Audio recordings will be downloaded onto password-protected computers. The code 
sheet to identify participants will be stored separately from the data to protect privacy. When we 
present or publish the results of this study, we will not use your name or other information that 
may identify you. However, we may share some photos on reports, media, posters and workshops 
to illustrate the activities/work of this project. 
 
Compensation: You will not be paid to participate in this study. However, your travel costs will 
be reimbursed.  
 
Contact Information: If you have any questions, concerns, or complaints about the study please 
contact me or the PI - Dr Christine Musyimi at Africa Institute of Mental and Brain Health on 
(+254724572202) or the Secretary of Maseno University Ethics Review Committee (MUERC) 
for any questions regarding human research rights on Private Bag 40105, Maseno, Kenya, or call 
on Tel: +254-057 351 221, or email: muerc-secretariate@maseno.ac.ke 
 
 
 
Consent form 
 
If you are willing to volunteer for this research, please sign below. 
 
Name of Participant ________________________________________________________ 
 
 
 
Signature of Participant ____________________________  Date ___________________ 
 
 
 
 
Researcher Obtaining Consent ________________________________________________ 
 
 
 
Signature of Researcher ____________________________  Date ___________________ 
 
 
 
 
 
 
 
 
 

INFORMATION SHEET AND CONSENT FOR ANTI-STIGMA INTERVENTION 
 
Title: Effectiveness of a dementia anti-stigma intervention in rural Kenya 
 
Principal Investigator: Dr Christine Musyimi, Ph.D, Africa Institute of Mental and Brain Health 
(AFRIMEB) 
 
Co-Investigator: Dr Nicolas Farina, Ph.D, University of Plymouth, UK 
 
Sponsor: Alzheimer’s Association 
 
Purpose: The purpose of the study is to ascertain the long-term effectiveness of a locally developed 
dementia anti-stigma intervention in order to establish a community resource that will improve 
dementia understanding, reduce stigma and improve health behaviours. You are invited to take part 
in this study because you are aged 18 years, able to speak Kamba and reside in Makueni County. 
 
Procedures: If you decide to take part, you will be required to actively participate in four psycho-
education group sessions lasting about 60 to 90 minutes and will be taking place once or twice in 
a week. These will aid in improving our understanding about dementia, reduce stigma and improve 
health behaviours. We will audiotape the groups and interviews to learn as much as we can from 
these discussions. The sessions will be facilitated by two Community Health Workers from your 
area. There will also be assessments which shall be done by a member from the research team 
belonging to Africa Institute of Mental and Brain Health. These assessments shall take place three 
months before and at the beginning of the group sessions and again at 6 and 12 months. Groups 
will be composed of about 10 to 12 people. 
 
Benefits: This study is not designed to benefit you personally. Talking in the group may aid in 
shedding more light on how to refine the existing dementia anti-stigma intervention, to better tailor 
it to the needs of the Kenyan people.  
 
Risks: There is the possibility that participation in this study may make you feel uncomfortable. 
In case you may have concerns during the study, please feel free to talk to any of our research 
members using the contacts provided.  
 
Voluntary Participation and Withdrawal: Your participation in this study is completely 
voluntary. However, you do not have to take part in this research if you do not wish to do so. If 
you choose to participate, you are free to withdraw your consent and discontinue your participation 
at any time without your relationship with us being affected and without incurring any penalty. 
 
Confidentiality: We will keep your records private to the extent allowed by law. We will use a 
study number rather than your name on study records. The information you provide will be stored 
at Africa Institute of Mental and Brain Health offices in locked cabinets and on password-protected 

computers. Audio recordings will be downloaded onto password-protected computers. The code 
sheet to identify participants will be stored separately from the data to protect privacy. If you are 
a group participant, we will ask all group members to keep information private. When we present 
or publish the results of this study, we will not use your name or other information that may identify 
you. However, we may share some photos on reports, media, posters and workshops to illustrate 
the activities/work of this project. 
 
Compensation: You will not be paid to participate in this study. However, your travel costs will 
be reimbursed.  
 
Contact Information: If you have any questions, concerns, or complaints about the study please 
contact me or the PI - Dr Christine Musyimi at Africa Institute of Mental and Brain Health on 
(+254724572202) or the Secretary of Maseno University Ethics Review Committee (MUERC) 
for any questions regarding human research rights on Private Bag 40105, Maseno, Kenya, or call 
on Tel: +254-057 351 221, or email: muerc-secretariate@maseno.ac.ke 
 
 
Consent form 
 
If you are willing to volunteer for this research, please sign below. 
 
 
Name of Participant ________________________________________________________ 
 
 
 
Signature of Participant ____________________________  Date ___________________ 
 
 
 
 
Researcher Obtaining Consent ________________________________________________ 
 
 
 
 
Signature of Researcher ____________________________  Date ___________________