Dementia: Understand Together – Ireland’s national campaign and framework for dementia inclusive communities

Written by  Fiona Foley, Senior Project Manager, National Dementia Services, Health Service Executive

Ireland has a current population of 5.3 million people. With more than 64,000 people living with dementia in Ireland, and this figure set to double by 2045, many of us are and will be affected by dementia. The majority of people with dementia live in the community, and want to continue doing so. Staying active and connected are vital for both brain health and general wellbeing. For people living with dementia and those caring to support them, this can have a real impact on their day to day lives and short and long-term health outcomes. The campaign demonstrates how simple, practical actions can help to make a big difference to the person’s health and wellbeing and how all members of a community can support people affected by dementia to be socially active and engaged.

Aims and Objectives

Dementia: Understand Together is a public support, awareness and stigma reduction campaign aimed at inspiring people from all sections of society to stand together with the 64,000 Irish people living with dementia. It is one of the 6 priority actions of the National Dementia Strategy (2014), which identifies key principles to underpin and inform the full range of services provided to people with dementia, their families and carers. It is also in an integral part of the Dementia Model of Care (2023) with a focus on continuing to increase awareness and understanding of dementia as well as post diagnostic supports for people with dementia, families, carers and supporters.

The Social Offering

The campaign is seeking to:

• Build understanding and awareness around dementia in Ireland

• Inspire individuals, businesses, organisations and service providers to take action to support people living in their communities

Outcomes for a person with dementia and their families

To be understood, respected and valued

To stay socially connected and actively engaged in community life

That local businesses and amenities are responsive to the person’s needs

That the built environment is accessible

Integrated Intervention MIx

The Dementia: Understand Together campaign is different to how many other campaigns internationally have been established. From the outset it was important that the leading organisations providing services, supports and information around this issue worked together to develop and implement the campaign, rather than one organisation acting alone.

The campaign is led by the Health Service Executive (HSE) in partnership with The Alzheimer Society of Ireland, Age Friendly Ireland, Healthy Ireland, Dementia Services Information Development and Support, and Age & Opportunity. The campaign working group includes representatives from these organisations, an Irish representative from INTERDEM, as well as people with dementia and family carers. 

Systematic Planning

Development of the campaign began in mid-2015 with an extensive research programme including a literature review of international best practice, quantitative research to provide a baseline understanding of people’s knowledge and attitudes using a face-to-face survey with a representative sample of 1,300 people, and focus groups with people with dementia, carers and health professionals to give a deep understanding of the main issues and needs.

At this time, fear and misunderstanding surrounded dementia which resulted in loneliness, social exclusion and isolation for people living with dementia and for their families. And this could be for numerous reasons, such as the fear to talk about dementia, the worry of how to engage, changes in behaviour that may not be understood, and the loss of abilities such as driving. It also resulted in delays in seeking help and diagnosis, with people missing out on available supports and services as a result.

The campaign was launched in October 2016 via a high profile mass media campaign and the support of a coalition of partners from public, private and voluntary sectors. The campaign seeks to build on the wide range of dementia specific programmes and initiatives already in place around Ireland. It draws together the people and organisations involved in this work, to join them with wider society, with the health service, with new partners like retail and transport organisations, financial services, and with neighbours and friends, to create a national movement which will help support those living with dementia and their loved ones.

The main elements of the media campaign include; stories from people living with dementia that aired on TV every 3-4 weeks in order to build understanding of the personal experiences of those living with the condition.

Understand Together in communities framework

In 2018, a new and innovative phase of the campaign began with the development of a national framework to mobilise a network of national organisations and local community champions across Ireland. Dementia: Understand Together in communities is a social movement which aims to empower people to create understanding and inclusive communities where people with dementia and their families are respected, supported and connected. It is based on six simple actions we are asking everyone to take combined with a grassroots approach to spreading change.  The six actions reflect the experiences and needs of people with dementia and their families.

In 2023 the Dementia Inclusive Community symbol was launched. This symbol was developed and launched by and with people with dementia, families and carers. The symbol can be displayed by organisations and community groups across the country as a sign of solidarity and support. 

Now more than 60 national organisations have joined the campaign. They participate in dementia awareness training for staff members, review their services and supports so that they are dementia inclusive, conduct walkability audits and engage with people with dementia and their families through focus groups or user disability groups.

In addition, 1480 individuals have signed up to the campaign as Community Champions. They engage with their local communities, raise awareness, form alliances or share simple acts of support for people with dementia and their families.

Research and Evaluation

The campaign is measured by a national survey, digital and social engagement, media coverage (with focus on regional media), and events and engagement with partner organisations and community champions. In January 2018, a national survey with a representative group of over 1,000 people was carried out, and within 2 years of launching the campaign there was a measurable change in awareness, understanding and attitudes in the population around dementia and the stigma that exists.

The 2021 survey showed that local initiatives are positively influencing the public’s empathy towards people with dementia which in turn impact their willingness to take meaningful actions.

For people with dementia and their families it is often the small things that mean the most.

Things like staying in touch with family or friends, supporting someone to keep doing the things they enjoy or making a small change in a business so that the person can use a service independently can make a big difference to the life of someone living with dementia.

Community champions make a difference. Will you join the campaign?

We all have a role to play in making our communities inclusive for everyone. If you are living in Ireland, you can join other individuals across the country who recognise that a community consists of all of its people and that this is what makes it stronger. You can find out more about the campaign, check out dementia awareness training opportunities, sign up to become a champion and order materials, including dementia inclusive community window stickers or badges at www.understandtogether.ie/get-involved

If you are living outside of Ireland and are interested in the campaign, you can contact understandtogether@hse.ie

Marguerite Keating, Vice Chair of the Irish Dementia Working Group, who is living with Young Onset Alzheimer’s Disease shares the actions she takes in her own community in this video https://www.youtube.com/watch?v=JcdOuKb-DzM