Firstly, we use the use the thoughts of a person with dementia imagining a Dementia Friendly Communities as our current definition which is
“An integrated society where people with dementia live in “normal” home like situations throughout their lives with support to continue to engaging in everyday community activities”.The most important word in this definition is normal, our vision is that people with dementia will be facilitated by their community to continue to live in their community but also to adapt to the changes that a diagnosis of dementia can bring.
An essential element of Dementia Friendly Communities is the inclusion of the person with dementia in their community and their involvement with old and new networks. So what do we mean when we speak about Social Inclusion well in essence it is about creating a fair and inclusive society. It is about ensuring that people are encouraged to participate in all aspects of social, cultural, economic and political life.
At the heart of the work we do in The Alzheimer Society of Ireland is promoting the inclusion of the person with dementia and their carer in their local community, enabling their participation in the issues and decisions that affect their lives. We strive to find new and innovative ways of engaging with the particular needs of people with dementia and their families which our traditional services do not always meet. Empowering people with dementia and their carers/families to support each other and make their voices heard on issues which affect them is central to achieving sustainable social inclusion.
However, in terms of the field of dementia studies Social Inclusion has received little attention, with only a few exceptions. Therefore, the whole notion remains relatively unexplored and as a result presents us with many exciting opportunities as well as challenges.
Social Inclusion is essentially grounded in the real life experiences of people. It is a user-friendly term and does not stigmatize people as the terms poverty or sufferer may.
It is important however before we try to understand the links between Social Inclusion and what we are going to learn about today that we understand what is meant by the term social exclusion. Many social commentators would say that social exclusion can usefully be thought of as existing when groups of people are unable to achieve what are viewed as “normal” levels of social acceptance and participation.
It is widely known and widely accepted that people with dementia experience social exclusion in many different ways, at different times and different levels.
People with dementia are often excluded from family and community life, they may have limited opportunities for meaningful occupation and often find it difficult to access and understand the information that they need to plan and live as full lives as possible.
The findings from a study on the issues of stigma and dementia, completed by Dr Louise Daly for the Alzheimer Society of Ireland in 2006, found that people with dementia and their carers are often subject to attitudes and experiences, which encourage isolation from their usual support networks, socially distance them from others in society, presents them with difficulties in navigating the available systems and services, and threatens their self-esteem and personhood. These are experiences commonly associated with belonging to a stigmatized group. It is for these reasons that the development of specific policies and services to address Social Inclusion issues is so important for people with dementia and their loved ones who care for them.
This is where the idea for developing Dementia Friendly Communities was born.
Essentially, Dementia Friendly Communities (DFC) are about transforming our villages, towns, cities and communities into better places to live for people with dementia. It is about facilitating local communities to enable people living with dementia to live in their own community and retain their traditional networks.
It is not about setting up ‘new’ services, but instead supporting the existing community to become dementia friendly and inclusive. The concept of DFC is grounded in places where people live and services that people use (Goodchild, 2011). It is new and cutting edge and attributable to the more creative thinking that is going on in the Alzheimer movement in Europe in particular.
So what is the vision and values for a Dementia Friendly Communities?
The overall vision is to reconfigure the communities that we all live in and mainstream dementia into everyday life of that community. The vision is to involve all the stakeholders and members of the community to be dementia friendly. One of the core values of the model is placing the person with dementia at the center and giving them a meaningful voice in determining the place they wish to occupy in their community.
It ascribes the person with dementia the role of active citizen with rights. This contrasts sharply from the current models of dementia care where the status of the person with the condition is viewed as being entirely passive, ‘sick’ and without a voice.
DFC values rights and empowerment, community action, community empowerment, social solidarity and shifting power dynamics. It also places the concept of inclusion of the person at the heart of the initiative. The initiative is not about replacing existing social and health care responses to dementia but instead aims to complement and support them.
The final thing that needs to be incorporated as we move towards a Dementia Friendly Community is that it requires a community development approach. It will only be successful if it is a grassroots, community-led initiative. We are currently in a pre development phase of building our Dementia Friendly Communities and the main steps that we need to take include
Making contact with the relevant stakeholders such as yourselves that are gathered here today. We need to build relationships and develop awareness of the initiative. We would then hope to produce some information for the key actors and the community in general so that they are informed of the initiative. We will continue to host a number of meetings that are focused on raising awareness about the project and building a community of interest. Through this process we would hope to garner ideas that could be developed in conjunction with an action plan to roll out the initiative. Once the ground work has taken place the project can then move into the development phase.
So what would a Dementia Friendly Community look like? Where are the examples? Who can we learn from? Innovations in Dementia a Community Interest Company based in the UK were to seek the views of people with dementia about the idea of Dementia Capable Communities. They focused on the social and cultural environment more than on the built environment. What they identified were 5 main themes
Not surprisingly local facilities are very important for people with dementia. Shops were a strong theme across all communities, with most people saying that it was the staff that made the main difference and in particular the importance of good communication skills. One person said “If you tell people that you are struggling and why – they are generally very helpful”. In rural areas, pubs and the post office were of particular importance: “The pub was the centre of the village, and as long as Dad could go there he felt connected to what was going on” (supporter from a rural area).
The positive role of support services in the community was mentioned frequently by all communities, although this featured less strongly in suburban areas. However, it is interesting to note that no-one mentioned their GP.
The importance of friends, family and neighbours as well as the broader community were cited across all communities. “Friendly neighbourhoods - I think people would help out if needed, rather than ostracize anyone with dementia” (person with dementia from a suburb).
The importance of getting involved and staying involved with local groups was highlighted. Many of the respondents were already part of a local group such as Singing for the Brain (Alzheimer’s Society) or a local memory café which is not a million miles away from the Social Club model that Richard will be speaking to you later about. Therefore, membership of a local group was viewed as very important across all communities. Words like “safe haven” and “place of safety” were frequently used to describe local groups: There was a strong sense that local groups provide not just support and activity, but a sense of mutual support and engagement.
So where are we now…..
I hope that you will join us on this voyage of discovery of Dementia Friendly Communities and that you like us see the value in this initiative and most importantly the value and benefits for people with dementia and their families.
The Alzheimer Society of Ireland
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room