There is no one way to include people living with dementia in your work. Including people living with dementia and their families is undoubtedly an essential component of doing anti-stigma work: we need to understand what is most valued by people living with dementia and their vision and aspiration for social change in order to make meaningful impact. On one hand, this means understanding experiences of unfair treatment and the actions and behaviours which can be most hurtful.
On the other hand, we need information about what kinds of actions are most empowering and what resources and support are needed to combat stigma and to live one’s best life. Thus, it is essential that people living with dementia are at the heart of the work to ensure the programme is meaningful for them.
The vision for how we should reduce stigma and empower people living with dementia, however, differs between individuals and according to their culture and context. As such, we cannot provide a simple one size fits all approach for doing this work. Instead, we provide a set of principles and recommendations for working together with people with lived experience, making sure that people living with dementia are central to the vision of any anti-stigma programme and activities.
1 Activities and opportunities should be open to all.
People with lived experience are a diverse group. In the spirit of reducing stigma, it is important to remember that activities and opportunities should be open to all. Some people may face more barriers to being involved. Sometimes this is related to the stage of their dementia, but accessibility may also be limited because of gender, ethnicity, socio-economic group, sexual orientation, literacy, age or other factors.
When starting a new anti-stigma programme, it is common for levels of involvement to be small at the beginning. If there has not been much activity in a community, there may be only a few people who have previously spoken about their condition. Indeed, it may not be commonplace at all to speak openly about one’s dementia and so we need to be grateful for the first people that step forward to share their stories.
Nonetheless, we also need to be cognisant from the beginning when setting up any programme of the diverse groups affected by dementia and to have a plan and guidelines for recruiting with diversity in mind and getting broad input, even if this sometimes happens later in the programme. This may, for example, require understanding barriers for different groups to be involved and then brainstorming around how to resolve these.
2 Recognise that advocacy opportunities for people living with dementia and their care partners can take many forms
Advocacy among people living with dementia is not only about public speaking. Indeed it is important to provide a variety of opportunities. Participation can be improved by accommodating and supporting people living with dementia of different abilities and preferences. For example, individuals with language impairment may opt for artwork and other visual mediums to communicate their messages while others may prefer to use poetry, music or to deliver their message alone or in a group or with support from, for example, care partners.
3 Discussing one’s own experience of living with dementia is a personal choice
We need courageous people to come forward to share their stories of living with dementia to effectively fight stigma. Indeed, sharing one’s story may help people feel unburdened because they no longer have to live in secrecy. There is nothing shameful about having dementia, however, it should still be the person’s choice whether they share their experiences. Thus, people living with dementia need to be in control of whether they share their story, but also how, to whom, and the kinds of details made public. The costs and benefits of sharing one’s story may be different depending on where one lives, who they speak with and the details that are disclosed. People may want to share their stories in different ways. Some people may not be ready to share openly and would prefer to maintain some anonymity. Thus, it is important to take the time to provide people support in this decision-making process before disclosing their story, and throughout their journey.
4 Help individuals to weigh potential risks and benefits of talking about their personal experience of living with dementia and provide support and security for those who come forward
Of course, anti-stigma programmes strive to create a culture which is open and supportive to people living with dementia so that they do not face negative consequences for disclosing one’s condition. Telling a personal story of one’s own experience in a community where there is little understanding and support for people living with dementia or where it is common to stigmatise people living with dementia; however, may carry some risks. Indeed, the pioneers who lead movements often require a great deal of courage to advance social change. Thus, it is important to support people who want to come forward to help them to weigh the risks and benefits of sharing their story publicly and to think about how they can do this in a safe way where they feel comfortable.
Many people who share their story also highlight benefits including meeting peers (both people living with dementia and their carers) in addition to reducing internalised stigma and shame.
This means developing consent forms which are reviewed together carefully and which detail these issues in a way that is clear and comprehensible. It is also important to identify different types of supports available. This may include local organisations and online materials but should also include a named person from the team who can be contacted when support is needed.
This information should be provided at the beginning; but in addition to passively providing this material it is also important to actively reach out and check in with people to see how they are doing and make sure they are safe and secure.
5 Opportunities to develop skills and experience
People living with dementia may have different strengths, values and goals of what they want to achieve and contribute toward in an anti-stigma programme. Thus it is important to work together with people living with dementia to determine the level of involvement that they aspire to and where they want to focus their efforts.
Some people may prefer to have a behind the scenes role while others feel more comfortable and have experience in speaking out and may then have a more public facing role. Moreover, some people may want to share their story publicly, but need additional support to realise that aim. This might require providing training and support so that they can take on the activity and become more actively involved.
The programme should focus on empowering and supporting people to address their goals within the anti-stigma programme and identify relevant opportunities, training and support to help people become involved.
6 Access to advocacy materials
It is important to have access materials widely accessible for different audiences. Although stigma is a global issue, most advocacy materials are available only in English and originate from high-income countries.
This is despite the fact that 70% of all people living with dementia are residing in low- and middle-income countries. Translation to other languages could help reach a wider audience.
Also, although stigma to an extent is a universal experience, differences in experiences of discrimination may also be related to social, cultural and political contexts and cultural adaptation and contextualisation could help to make material and messages more appropriate and acceptable for different settings.
Local Alzheimer’s and dementia associations can be potential sources of such materials. Our collaborator Alzheimer’s Disease International provides information about local organisations (www.alzint.org)
7 Compensate people for their time and expertise
As we have discussed, including people living with dementia is essential for any anti-stigma programme and thus when planning activities, it is important to consider how we can value their contributions.
This involves planning ahead for the types of activities to be carried out and how this balances with the resources which are available. This also means developing guidelines around how to handle compensation including payment for their contribution (including the amount and how it will be provided), reimbursement for expenses and how their involvement will be acknowledged.
Sometimes, it is also appropriate to provide other benefits such as training, social opportunities, certificates, chances to present and share programme lessons. These processes for compensation should be clearly communicated to those who are considering being involved.
Moreover, the value of the experience and expertise of people living with dementia and carers needs to be communicated clearly to those involved in delivering the anti-stigma programmes early on and throughout the programme.
