Dementia is a life changing disease, which one in three of us will die with, writes Baroness Greengross, chair of the APPG on Dementia.
But no one in our society will escape unaffected. A parent, a family member, a friend, dementia touches every life, and every community.
For our country, as the population ages, the challenge of providing help and support for people with dementia is growing. Today 800,000 people are living with dementia; by 2021 there will be more than a million. It currently costs the NHS, local authorities and families £23 billion a year but by 2018, the middle of the next Parliament, the cost is projected to grow to £27 billion.
For every individual, for every family, the experience of dementia is unique. But for those planning and providing services for people with dementia as our population ages the demographic of those needing services is changing. The number of Black, Asian and Minority Ethnic (BAME) people with dementia in the UK is increasing as people who moved here during the period from the 1950s to the 1970s are reaching their seventies and eighties.
Today the best estimation, and it is more than likely an under-estimation, is that 11,500 people with dementia in the UK are from the BAME communities. There is evidence of lower diagnosis rates in black and minority ethnic (BAME) communities, and that people in some communities often seek a diagnosis later than their White British counterparts, which delays access to essential services. There are also different cultural understandings of dementia that need to be taken into account when commissioning services; the word dementia doesn’t actually exist in some languages. But the evidence of what needs to be done, and examples of best practice for commissioners to model, is limited.
Since it was established in 2007 the All Party Group on Dementia inquiries have uncovered the excessive use of anti-psychotic drugs in care homes; the fact Primary Care Trusts were failing to spend money ear-marked for dementia services and the reasons behind the shockingly low rates of dementia diagnosis across the country. Today we are launching an inquiry into services and support for people with dementia living within minority communities. We want to hear the experience of people with dementia from BAME communities, and also the evidence from around the country on what works in terms of services.
Soon dementia will be a disease that will affect one million people. We face an urgent challenge to make our country dementia friendly and ensure those with dementia are able to live independently and as they chose, for a long as possible. But no community should be excluded. We need to ensure that our services are structured so people from BAME communities with dementia, and their carers, are able to access the help and support they need.
For further information about this work, and to sign up and register your interest, please see Alzheimers.org.uk/appginquiry