Families from minority communities affected by dementia

A project jointly-led by Keele University is looking into the issue of people from minority communities being under-represented in dementia services, with the aim of empowering them through accurate information and the development of family and community support.

The study has seen academics, key community influences and leaders from local minority communities come together to help identify affected families and establish an exploratory pilot study around how best to offer additional support.

Building on the excellent support already provided within the family unit, and working in collaboration to identify the challenges and barriers to accessing solutions, the pilot study aims to identify gaps in the knowledge and information of these families focussing on issues such as: dementia awareness; knowledge and information; disease progression; medication; services and resources available; and end of life support.

A lack of understanding of the dementia can leave carers feeling guilty and inadequate when seeking help and support. The project therefore aims to create a greater awareness of the progress of the illness and the support available, leading to a better quality of life for carers and the person with dementia.

Through the project, co-productive strategies are being created with local families, leading to reduced isolation, better links to social care and a better understanding of dementia. Economic and cultural obstacles are also being identified, with the project being able to offer practical solutions for people from BME communities with a caring role. Clear, tailored information and advice also offers greater financial stability for the person with dementia, their main carer and the wider family/community.

Outcomes from the project will be disseminated locally throughout the North Staffordshire social care and health community, as well as nationally and internationally.

The project will include the development of resources, such as information leaflets, translated into locally-used community languages, which will ensure a better understanding of the condition and give information on what actions to take to gain the best support for the person who has been diagnosed. The advice and information leaflets will cover finances, care and support, health concerns and general dementia awareness.

Due to the restrictions resulting from the Covid-19 pandemic, the resource materials will be initially launched virtually, giving Approach and the University the opportunity to share information with service providers from statutory, voluntary and independent sectors and HEIs, and to learn through the feedback of the carers and families involved in the project about how best to support people with dementia from BME communities.