Dementia Friendly Communities: Sharing Learning from Bradford and York

Dementia friendly communities: sharing learning from Bradford and York

12 October 2015

Christine Heron LGiU associate

Summary

As part of its dementia support programme, the Joseph Rowntree Foundation (JRF) has published How Can we make our cities dementia friendly: sharing the learning from Bradford and York. This report identifies key messages from two independent evaluations of areas that are relatively advanced in their dementia friendly community (DFC) developments. This policy briefing summarises the report and also covers work of the dementia engagement and empowerment project (DEEP), on language to use, and avoid, when talking about dementia. This policy briefing will be of interest to areas that are developing their own DFC programmes.

Key messages include:

• Active engagement of people and their families, and connections within communities are at the heart of DFCs.
• DFCs must be underpinned by ongoing awareness raising, training and positive media coverage.
• Both primary and secondary health providers have a vital role in supporting social inclusion.
• There is no single blueprint – but local grassroots community activity needs to be supported by strategic planning, commissioning and leadership.

Briefing in full

Background

Dementia friendly communities are defined as areas ‘where people with dementia are understood, respected and supported and confident they can contribute to community life. In a DFC people will be aware of and understand dementia, and people with dementia will feel included and involved, and have choice and control over their day to day lives’.

More than 80 places across UK are now working to become dementia friendly. The approach was given a boost by being one of the priorities in the Prime Minister’s challenge on dementia in 2012.

Bradford programme overview

Bradford council has supported DFC since 2011, with the programme jointly supported by the JRF since April 2013. Developments have generally developed in response to interest from ward councillors, officers or residents and include:

• The local Alzheimer’s Society has built links with eight organisations including Lloyds TSB, the Diocese of Bradford, Bolton Road Gurudwara, and a pharmacy; it has also targeted a council ward with a high proportion of older people.

• A jointly funded DFC officer has a target of creating twenty DFCs – geographical communities and communities of interest, as well as initiatives involving business and service providers.
• A Dementia Action Alliance was established to build broader engagement across all sectors.

York programme overview

The York programme has three distinct but connected strands of work.

• Awareness training to secure buy-in across all sectors has been funded by York Council and provided by the local organisation Dementia Forward.
• Over 30 jointly funded small grants worth a total of £130,000 have been allocated to seed fund projects including: music, art, gardening, cycling, croquet, cafe, film archive and youth programme.
• Creating a DFC within JRF and the Joseph Rowntree Housing Trust to demonstrate commitment.

Non statutory services are mainly provided by two charities. Dementia Forward has been commissioned since 2014 by York CCG and North Yorkshire Partners to provide care navigators, dementia advisors and a dementia cafe. York Alzheimer’s Society has been funded to provide adapted sports activities, singing for the brain, reading aloud, peer support groups and dementia cafes. The Minds and Voices forum has been established to encourage people with dementia to become engaged in the DFC.

Key messages and findings from the evaluations

The active meaningful engagement of people with dementia and their families is fundamental

In both areas, people with dementia and carers have been involved in designing, implementing and evaluating DFCs. In Bradford the Face it Together group is wholly led by people with dementia who have been involved in advising on a hospital refurbishment, planning on a shopping centre and interviewing for the Community Trust. In York a core group is involved in evaluating bids for funding, auditing physical spaces, giving media interviews, writing blogs and speaking at events.

Challenges include extending the range of people with dementia involved, and projects need time to establish relationships in new communities. The areas now want to move beyond people with dementia influencing the work of DFCs to becoming co-creators.

DFCs must engage with and achieve equity for all people with dementia whatever their circumstances

Both areas have many examples of engaging with different communities of interest including black and minority ethnic (BAME) people, lesbian, gay and transgender people, people with learning disabilities and women. For example, some BAME communities are at greater risk of developing early onset dementia and vascular dementia, and tend to be diagnosed later, and receive less contact with services.

Through its approaches to developing culturally specific support, Bradford has identified the need for more work to increase referrals from Asian GPs, and to help families and migrants. Both areas found that much more needed to be done to develop a whole person approach to the health of people with dementia and co-morbidities such as Parkinson’s Disease.

Practical barriers to inclusion must be addressed if normal lives are to be continued

People with dementia and their carers are concerned about practical barriers to participating in everyday life, such as transport, way-finding, safety and keeping fit.

Examples of work undertaken to tackle these barriers include:

• A York taxi company arranged dementia awareness training for drivers, British Transport Police raised awareness with stations and providers on the east coast main line.
• Dementia friendly signage is being established in town centres.
• North Yorkshire County Council trading standards is promoting the idea of ‘protective neighbouring’ to help address problems such as cold callers.

More work needs to take place to embed the developments systematically, to extend to rural transport links and to promote access through ‘transport buddies’.

The human right of people with dementia and carers must be recognised and promoted

There is evidence that some decision makers do not accept that people with dementia have the same rights as other groups to the removal of discriminatory barriers in areas such as planning controls, building design and transport. Leaders and campaigners need to work to ensure that the Equality Act is used to protect the rights of people with dementia.

DFCs must be underpinned by ongoing awareness raising, training and positive media coverage

Both areas put a strong emphasis on raising awareness and influencing organisations to become dementia friendly. For instance in Bradford over 70 education sessions were undertaken with three thousand attendees ranging from ambulance and coach drivers, legal firms and shops. Influence has spread to a regional or national level; for instance through a local Cooperative shop to the Cooperative movement and through local banks to national. Councillors have become dementia friends. However, while some organisations are keen to be involved, it remains difficult to engage with all businesses.

In York, the strong art and culture movement brought many opportunities for awareness raising, with an annual concert, a film archive memory bank, and intergenerational work bringing together pupils and people with dementia to undertake social and cultural activities. An area for future work is to ensure that frontline staff have the same level of awareness as service leaders.

Connections and networks within and beyond the community are at the heart of DFCs

People with dementia and carers indicate that they gain great strength from meeting face to face, valuing the opportunity to share experiences, receive information and pursue interests. Meetings take place in village groups, faith-based groups and groups of interest. The JRF indicates that in other areas the use of social media has been a positive networking tool.

Professional networks are also important, though often hindered by restructuring and changes in personnel. The evaluation found that there is more scope for systematic professional networking, not primarily linked to the DFC programme, perhaps undertaken by the care navigator role or through virtual networks with apps being developed in public health.

Local grassroots community activity is the bedrock of DFCs; it unearths innovation, untapped assets, unsuspected champions and creative partnerships

Bradford has taken a ward approach, with dementia now featuring in half of all council ward assessments and action plans, representing a sustainable approach, not dependent on the DFC programme. However, wards have progressed at different speeds and with variable levels of interest, and with concern from some ward officers about additional responsibilities.

York’s approach has been to encourage ‘many flowers to bloom’ with a range of new small initiatives, often grant funded, such as Getting Along, which supports couples living with dementia and My Dementia a course for people with a new diagnosis. The challenge will be to ensure that successful initiatives are sustainable.

Grassroots activity must be supported by strong strategic planning, commissioning and leadership

Both areas had built their DFC programme into strategic planning and commissioning, with Bradford seen as particularly thorough in this respect, and York having plans to develop the ways in which the programme could be mainstreamed. However, there were concerns about the impact of austerity on DFC programmes. Also, the focus of commissioners tends to be on health and social care solutions rather than the personal, emotional and social needs of people with dementia. The report also identified that commissioners lacked confidence that creating DFCs could lead to savings or improvements in care, despite evidence about the cost effectiveness of community over residential care from the Alzheimer’s Society.

Both primary and secondary heath providers have a vital role to play in supporting social inclusion

Both areas highlighted the need for health providers to have much greater understanding of the social model of disability as it applies to dementia, and to be much more willing to make connections between the health system and the social and community system. This involves:

• GPs diagnosing earlier and more consistently.
• GPs, consultants and memory clinics referring to DFCs and other non medical sources of support. GPs are the focal point for information and referral and tend to refer to health services rather than considering social needs. Greater use of social prescriptions should be made.
• Greater health investment in DFCs and transfer of resources into community support.

There is no template; each community must develop its own approach.

The evaluation indicates that communities need to develop their own approaches bases on their unique cultural, geographical, spiritual and human assets. However, it identifies two frameworks: the Alzheimer’s Society recognition criteria, and the four cornerstones of ‘people’, ‘places’, ‘networks’ and ‘resources’ as useful for guiding developments.

Dementia Engagement and Empowerment Project (DEEP)

DEEP is a national user movement – a network of groups of people with dementia working together to raise awareness, influence policy makers and decision makers and local services, and challenge people’s views about what it is like to live with dementia. There are 50 groups in the network which is UK wide and funded until 2019. One of DEEPs recent pieces of work was to produce Dementia words matter: guidelines on language about dementia. Primarily aimed at journalists and the media, the guide was produced from a focus group of people with dementia and identifies ‘curl up and die words’ including:

• dementia sufferer
• demented
• senile or senile dementia
• burden
• victim
• plague
• epidemic,
• enemy of humanity
• living death.

Alternative words are:

• people with dementia
• people living with dementia
• people living well with dementia.

Comment

This JRF report provides helpful information about alternative approaches to establishing DFCs, with more detailed information to be found in the independent evaluations of the city programmes. It will be of use for areas looking to develop their own DFCs since it sets out their potential, and identifies useful approaches.

However, as the report points out, the evidence base for DFCs is underdeveloped.

While this report provides useful in-depth coverage of the journeys in two areas, its remit does not extend to a qualitative and quantitative evaluation.

This surely needs to be the next step, since, although all areas will wish to develop dementia friendly measures as far as possible, in this economic climate the extent to which resources are allocated to this will depend on evidence about cost-effectiveness and impact. With authorities struggling to make the shift from high level to preventative services, evidence about the potential to reduce the need for intensive services, as well as positive impact on people’s lives is essential.

Information from DEEP on the words that a group of people with dementia identified as making them cringe is provided as a useful checklist. While this is aimed at tabloid hyperbole, it can be easy to use the less extreme wording – ‘dementia sufferer’, resource ‘burden’ – which is better avoided.

Related policy briefings

Dementia friendly communities

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