Personal experiences of living with dementia
People with dementia and their carers often face discrimination because of the disease. Such discrimination can be even worse for people from minority groups. Roger Newman, former carer and co-founder of the Lesbian, Gay, Bisexual and Transgender support group of the Alzheimer’s Society, explains how real inclusion and diversity can be achieved for people with dementia and their carers
Confronting Double Discrimination: Gods for today!
I live in a world where the words ‘inclusion’ and ‘diversity’ are sometimes even gods! They reflect an understanding of modern society which for some might be exasperating but for me as a gay man, and therefore a member of a minority group, they can be a salvation.
As a founder member of the Lesbian, Gay, Bisexual and Transgender (LGBT) Support Group of the Alzheimer’s Society I have been glad that it has more than just paid lip service to such principles, indeed at its Annual Conference in September it gave the Group a prestigious award for volunteering with a citation which read ‘they are brave and dedicated people and we are proud to honour them’.
Surely all European Alzheimers’ Groups would subscribe to the belief that inclusion and diversity are fundamental to their work of supporting carers and those with dementia, but I have long since realised that it is one thing to have a principle and another to commit yourself thoroughly to achieving it.
I want to suggest these steps to achieving real inclusion and diversity:
- There must be a proactive acceptance that dementia is more than a white, middle class, heterosexual, Christian condition. We have two compelling posters: One has two men clearly devoted to each other and the other has two women similarly so, which state ‘Gay or Straight, Dementia does not Discriminate’. Such statements can easily be replicated for any minority and I believe that it is essential to proclaim such truths because we are too frequently tempted to take the easier option of concentrating on our ‘own kind’.
- There must be a positive affirmation of minorities by our Societies. It is too easy to sign up to equal opportunities projects and then hide behind statements like ‘it doesn’t matter who you are – we treat everyone the same’ because the result is surely just a low threshold of common care. Instead the affirmation should reflect the belief that minorities belong because they are black, gay, muslim etc; and then by asking questions, however searching, it will become clearer how dementia affects them and what their distinctive needs are. The consequence will be real insight and will ensure that the resulting inclusion is truly focused, informed and positive.
- There must be clear and active means of achieving ‘inclusion’ and ‘diversity’. Certainly policies will be necessary, but publications will also need to reflect this. Yes, show caring families and devoted partners but also at times show carers and those with the condition who are black, same sex, concerned friends and so on. In our Society’s magazine ‘Living with Dementia’ there is an active approach to publishing articles reflecting the diverse nature of our population. There may also be the need to establish specific groups like the LGBT group because sometimes minorities feel happier that way and there may need to be positive discrimination in employment too.
- Finally there must be training for all service providers and volunteers so that inclusion becomes fundamental to the way they undertake their work. Nothing short of that can ensure that dementia care meets the needs of the whole person.
The end result? Well surely nothing more nor less than skilled, successful, fulfilled, accepted people, professionals, carers and those with the condition alike, who know that in this world of dementia the very best has been offered and received, because dementia does not discriminate.
Notes: Roger Newman is a 67 year old retired teacher from Margate, Kent. As a result of caring for his partner, David, he co-founded the LGBT support group of the Alzheimer’s Society (England, Wales, Northern Ireland). In 2007 he was awarded the MBE by Queen Elizabeth for his charitable work. More about the work of the LGBT group can be found on www.alzheimers.org.uk/gaycarers.
This article was first published in issue 2 of the Dementia in Europe magazine (2008).
Last Updated: Thursday 21 June 2012