Where there is no data (dementia)

Background and policy

Dementia is a syndrome where sufferers experience a degradation in mental functions which affect their daily lives, and can include any number of symptoms such as memory loss, a difficulty in communicating and reasoning and even personality changes. As an umbrella term, dementia can have a variety of causes, the most common of which is Alzheimer’s disease, but dementia can also be caused by the effects of physical brain damage and certain infections. Living with dementia can be extremely distressing and disorientating, which can lead to added complications like depression, or aggression.

Some 700,000 people in the UK are estimated to have some form of dementia, of which at least 11,500 would be expected to come from minority ethnic backgrounds if prevalence were the same as for the white population (Alzheimer’s Society 2007). However, there are studies that suggest rates of dementia are much higher in certain ethnic groups. African Americans for example seem to have more than twice the incidence of the non-Hispanic white population (Demirovic et al. 2003), but studies of African-Caribbean people in the UK suggests rates are somewhere between a 39%-73% higher (Adelman et al. 2011, Livingston et al 2001). South Asian ethnic groups may have higher rates of vascular dementia due to their higher risks of heart disease (Alzheimer’s Society 2012).

In February 2008 the Government produced Living well with dementia: a national dementia strategy. The plan sets out 17 recommendations for the NHS, Local Authorities and others to improve dementia care services. The recommendations are focused on three key themes of: Raising awareness and understanding; Early diagnosis and support; and Living well with dementia. This report was influential in motivating Nottinghamshire Health Care Team to evaluate their dementia services. The local Carers’ Strategy, personalised budget and dignity agendas have the potential to greatly improve the quality of life for dementia suffers and their carers. However, the awareness of dementia and available services in the BME community in Nottinghamshire is very low. Initial evidence showed under-representation in institutional contact, under diagnosis and a lack of use of support for dementia sufferers and their carers.

The project

The project aims to raise awareness and understanding of dementia in the BME community and to promote a whole system approach to dementia services with BME involvement. It seeks to promote appropriate assessment, diagnosis and culturally sensitive service delivery to the BME community.

Aims and objectives

1. To raise awareness and understanding of dementia in the BME community

2. To promote a whole system approach to dementia services with BME involvement

3. To promote appropriate assessment, diagnosis and racially / culturally /spiritually sensitive service delivery to the diversity in the BME community.

4. To promote the personalisation and direct payments agenda

5. To create a platform for informed consultation between providers, BME community and dementia service users and carers

6. To advise on how best to enable understanding through effective communication mechanisms.

Partners

Key stakeholders at the strategic level included NHS East Midlands Associate Director, and Strategic Relationships Managers, Managers from the Trust include General Manager, Service Manager, MHSOP and Head of Equality and Diversity. Primary Health and Social Care contributed support to the desired outcomes of the project.

Making it happen

NHS East Midlands held regional workshops on the dementia strategy, but had limited representation from the BME communities. Nottingham Health Care team believed that BME community elders within Nottinghamshire were not accessing dementia services in proportion to the expected incidence. However, there was very little local evidence to support a strong business case. So, the community development worker and the General Manager of the Mental Health Strategy for Older People worked together to gather evidence with support of other committed individuals. They conducted head counting in wards to show occupancy by ethnicity, creating basic evidence to support their observations. They supported their findings by extrapolating national level statistics to estimate dementia locally by ethnicity. NHS East Midlands Development Centre was able to offer match-funding to support efforts to increase the proportion of BME community elders accessing dementia services in Nottingham.

The team worked in close collaboration with the BME community and other partners to develop two linked strategies: raising awareness of dementia services in collaboration with twenty community organisations, and training local Community Development Champions. The aim was to raise awareness of dementia among ethnic minority communities in Nottingham.

The joint working in this project was facilitated by a shared commitment to ethnic health inequalities, the dovetailing of two national level agendas; Delivering Race Equality and the National Dementia strategy, and robust relationships between different organisations and partners especially at the community level.

Future challenges

There is a risk that the community organisations will lose interest because much of the project is being discontinued and many people involved are changing jobs. The community members could also lose trust in the services if their needs are not being adequately met in the future. This is not just a challenge for this project alone, but for many services during the restructuring of the NHS. It is important to make sure that the project is well documented, and that community members and staff have enough enthusiam to continue development as soon as opportunities arrive.

Further information

• The CSIP work on 10 High Impact Changes for mental health services

• Dementia does not discriminate report