Statement 10: People with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community
What does this mean for care providers?
The 2012 Prime Minister Challenge highlighted the importance of creating communities that are more dementia friendly, where people understand the impact of the disease, know how to relate to those who have dementia, and where people living with dementia find an inclusive and accepting social environment. Care providers have an important role to play in helping develop such communities.
Care homes, Extra Care Housing units and day services can all help to build a 2-way link between the community they are part of and the people they provide support to. Providers can hold community events, inviting those who live in the area to join together with those who use the service; they can offer their facilities to the community and host regular groups; and can also build links within the community to enable effective and rewarding trips outside the care setting. Providers supporting people living with dementia in their own homes need to keep well-informed about opportunities within the community, and provide support to access them if requested.
On an individual level, care providers should look to build links in relation to a person’s background and life story; they could get in touch with libraries, internet cafes, clubs, choirs or churches; and consider the value of bringing children and older people together. They could also explore opportunities for people to sit in on relevant Council meetings (for example, parish or county council meetings), join the Patient Participation Group at the local surgery, or attend public meetings in relation to planned developments.
Building such links will require providers to be proactive and imaginative, to think through the logistical challenges, and to consider carefully the support that individuals will need. But there will be real benefits too – the greater visibility of care settings and people living with dementia will help build awareness and confidence; there will be a greater variety and choice of activities and social stimulation; individuals will be helped to maintain existing interests and relationships; and it will bring together new people, ideas and experiences.
Why is this important to carers?
A common problem for many people with dementia and their carers is that, over time, they find it increasingly difficult to continue to stay involved with their local community. Ordinary day-to-day activities (such as catching a bus) as well as more complicated roles (such as being on a local committee) become too much – resulting in a loss for the person, their carer, and the community.
There is a growing sense that this is not an inevitable outcome of a diagnosis of dementia, and that there is much that can be done to support people with dementia and their carers to remain valued members of local dementia-friendly communities.
How can I support my relative to continue to be involved in the local community?
There are lots of things that you can do at an individual level, such as supporting you relative to stay involved in local groups and to continue with their participation in the community (for example, helping them continue to attend the local church or mosque). A diagnosis of dementia – particularly in the earlier stages – should not in itself stop involvement in the local community. And many of the suggestions raised already in relation to the other statements – such as supporting active living, facilitating relationships to continue – will crucially also mean that the person with dementia stays involved in their local community.
A person with dementia may need support, particularly as their needs change, to continue to be involved. This may come from you as the carer, a volunteer or self-directed support (personal budgets and direct payments). It may be that a dementia-specific service locally best suits the person’s needs – in this way the person with dementia and their carer are being supported within their local community and can go on to develop local links. Increasingly, care homes too are recognising that they have a vital place in their local communities, linking their residents and neighbours in a range of mutually beneficial ways.
What does this term 'dementia-friendly communities' mean and how can carers contribute?
Communities all over the UK are working to become 'dementia-friendly': this means organisations and individuals coming together at a local level to be more aware of dementia and more proactive about how they support people with dementia and their carers. The work involves a wide range of organisations – many of which have never before worked with the health and social care sector – for example banks and public transport providers (offering dementia awareness training for their staff who interact with customers), and tourist attractions (checking access, signage and customer service on offer).
Innovations in Dementia has carried out some research to find out what people with dementia and carers feel is important about their communities and what can be done to make them better places in which to live well with dementia. You can learn more by reading Finding out what a dementia friendly community means to people with dementia and carers.
The Alzheimer's Society has done a lot of work to identify 10 key areas that local areas should work on in order to be officially recognised as a community that is 'working to become dementia friendly'. They have developed a special symbol and recognition process for local communities – and committing to this process can help shape local efforts to become dementia-friendly. Carers can be key players in this process, bringing expert knowledge and experience of the daily challenges faced by a person living with dementia.
The Alzheimer's Society also leads a programme called Dementia Friends, which is aiming to recruit 1 million 'Dementia Friends' by 2015. Dementia Friends are volunteers who have been led through a short awareness-raising session by a Dementia Champion, in which they learn about dementia and consider what simple actions they can take as individuals to offer better support to people with dementia. Some carers may be keen to go through the short training course to become a Dementia Champion – again, using their experience to raise awareness about dementia across a broad spectrum of the community.
The Keeping active and occupied: Developing community links section on SCIE's Dementia Gateway offers some ideas about how care homes in particular can build links with their local community.
Local Dementia Action Alliances bring together a range of people and organisations in a locality who are interested in improving the lives of people living with dementia. The Dementia Action Alliance has developed a toolkit for local alliances on how to get started.
The Alzheimer's Society has brought together case studies to illustrate where dementia friendly communities are working well. These case studies may offer some ideas for care providers interested in supporting people with dementia to continue to make a contribution.
Memory Cafes can be a valuable way for people living with dementia and their carers to find peer support and contribute to their local community. The memory cafe website provides details of cafes across the country and a guide to getting started.
This 2013 Alzheimer's Society reports on progress in developing dementia-friendly communities. It includes examples of good practice as well as looking at the barriers to developing dementia-friendly communities. The report sets out 10 areas that communities working to become dementia friendly should focus on.
The Dementia Action Alliance has been working since its launch in 2010 to bring together as broad a spectrum of organisations as possible to transform the quality of life of people living with dementia in the UK and their carers. Members of the alliance sign up to a National Dementia Declaration (as at autumn 2013 over 700 had signed up). The Declaration sets out outcomes that the Alliance is campaigning for – including ensuring people with dementia have choice and control over decisions about their lives, and are supported to feel a valued part of their community. Members must prepare Action Plans for how they are going to contribute to securing these better outcomes for people with dementia by 2014. A key sub-group of the DAA are local dementia action alliances (for example, Torbay Dementia Action Alliance) which are springing up across the UK to try to deliver the aspirations of the national DAA at a local level – and the DAA website includes a search function to identify your local DAA.
The internet-based Dementia Advocacy and Support Network International (DASNI) launched in 2000 and since this time has been working to provide a forum for exchange of information, encourage peer support (such as local groups and internet links), advocate for services for people with dementia, and assist people to connect with their local dementia organisation. Approximately a third of members have dementia. DASNI members have made presentations at Alzheimer's Disease International conferences and speak and publish widely on dementia.
In 2012, the UK Prime Minister David Cameron launched The Prime Minister’s Challenge on dementia: a rallying call to drastically improve quality of life for people with dementia and their families and friends. The Challenge’s substantial programme covers three areas, one of which is dementia-friendly communities. The Dementia Challenge website includes a section on dementia-friendly communities, which has the latest news and information on work in this area.
The government-funded Dementia Friends initiative was launched early in 2013 and is led by the Alzheimer’s Society. Its aim is to develop a network of a million Dementia Friends across England by 2015. Anyone can become a Dementia Friend – once they have attended a one-hour information session led by a Dementia Champion and committed themselves to putting what they’ve learnt into practice. Sessions cover simple actions that people can take to make a difference to people living with dementia in their local community. Dementia Friends sessions are being conducted in a wide range of locations throughout England.
This 'how to' guide from the Dementia Action Alliance sets out the practical steps involved in launching a local dementia action alliance, covering topics such as publicity, funding, recruitment, meetings and links to further resources.
This 2012 resource from the Local Government Association and Innovations in Dementia was written to help local authorities to develop dementia friendly communities. A multifaceted practical toolkit takes up nearly half of the 70-page resource and includes: a checklist for dementia friendly environments, a help pack for customer facing staff, briefing notes for organisations and businesses, and a questionnaire to find out what a dementia-friendly community means to people with dementia and carers.
The Alzheimer’s Society website contains an interactive map where users can click on their relevant region or enter their postcode to find out about Alzheimer's Society services in their area – which can then be used as a starting point to finding out about the wider range of dementia services within a district.