Anti-stigma programmes should focus on improving the knowledge, attitudes and behaviours of the key target audiences that would make the most difference to the lives of people living with dementia. Of course, people living with dementia need to be at the heart of any anti-stigma initiative. Involvement may include ongoing dialogue and participation among a core group but also opportunities to engage in one-off activities. When identifying a target it is important to reflect both on questions of who and what need to change.
In relation to who, anti-stigma initiatives may focus on, for example, health and social care professionals, the media, policymakers and religious or community leaders; but, it also requires working together with families and people in the more immediate lives of people living with dementia and their care partners to help them to provide understanding and support and reduce the prejudice and discriminatory behaviours that matter most. People who exercise some power or authority about the life decisions and opportunities faced by people living with dementia should be prioritised as target audiences.
In relation to what, it is important to think about the behaviours and attitudes which are most harmful or which are most unfair in restricting the opportunities and wellbeing of people living with dementia. Is there some underlying misinformation, prejudice or stereotypes which contribute to this unfair treatment? Once these are identified it is important to work together with the target audience to develop change strategies which are appropriate for the context, use comprehensible language and are delivered in a way that will reach the target audience.
A collaborative approach between people living with dementia and members of the target audience may allow members of the target audience to take responsibility to implement changes.
Using a dialogue format can be helpful so as not to be too prescriptive about how the change happens and allowing for different and multiple approaches which are tailored to fit the context and audience.
Finally, it is useful to keep in mind that an approach which focuses on shame can backfire as people may feel they are being told how to act and in some cases this can embolden negative behaviour. As discussed throughout this toolkit, change strategies need to integrate social contact and sharing of personal stories to communicate messages. In some cases, there may be members of the target audience (for example health professionals) who have dementia and who are able to share their personal experience from an insider perspective.
Consult with people living with dementia to identify targets –considerations should address who (e.g., health and social care professionals) and what behaviour(s) and attitude(s) need to change
Balance reaching out to influential groups and authority figures and also those who come into frequent contact with people living with dementia but who also hold power
Identify allies and partners who can help to work with the target group. If, for example, one chooses to target health professionals, it can be important to work with partners who are also health professionals to effectively connect with the target group
Messages should be delivered by people with lived experience
Collaborating with allies or ‘insiders’ of the target group can help to shape a change strategy which reaches them. This includes using language or approaches they understand and are comfortable with
Consider messages which are not overly prescriptive or which rely on shaming the stigmatiser as these can sometimes backfire when people feel they are being told what to think. Collaborating with partners can increase ownership and allow for deeper reflection of more meaningful change
