Understanding the difference Dementia United will make to real people’s lives reminds us of why we need to dramatically improve services across Greater Manchester.
People living with dementia
Lesley Calvert is 63, from Salford and was diagnosed with Alzheimer’s two years ago. Lesley features in our film to launch Dementia United. Lesley worked as a District Nurse at Salford Royal hospital for 30 years and knows only too well how important a programme like Dementia United is for Greater Manchester.
Lesley was diagnosed within six months and feels fortunate that she was diagnosed relatively quickly, as she is aware that this story isn’t the same for others in a similar situation to her.
Lesley says: “Although receiving the diagnosis of mild cognitive impairment, with a type of Alzheimer’s disease, was quite scary at first, I feel I was well looked after throughout the process by my GP and consultants.
“Both my husband Sam and I felt a door opened to us when we got information from Alzheimer’s Society’s roadshow bus. There was brilliant support from Age UK and Humphrey Booth Centre in Salford too. However, the best thing for us was a post-diagnostic eight week course which gave us tips about having a diary, calendar and clock in front of me so I always know the time.
“Dementia United is an exciting project which will ensure people in Greater Manchester and hopefully beyond, will get the same support that Sam and I do.”
Dr Ann Johnson is 59, from Hale Barns, Altrincham and was diagnosed with Alzheimer’s aged 52. Ann is an Ambassador for Alzheimer’s Society. In July 2012 Ann was awarded an Honorary Doctorate by the University of Bolton for her ‘outstanding contribution to healthcare’ and in 2013 was awarded the MBE in the New Years’ Honours.
Ann, who is a retired lecturer in nursing, moved in with her mother after receiving a diagnosis of Alzheimer’s disease. Eventually they both agreed that it would be best for Ann to move into sheltered accommodation. As the youngest resident in her home Ann has given talks to staff and residents about her experiences of dementia.
She is still very independent and is a very active media volunteer for Alzheimer’s Society. Ann has contributed to several events including chairing sessions at the Dementia Congress 2011 and taking part in the Alzheimer’s Disease International conference in London 2012. She has been involved in the Champion Group for Dementia Friendly Communities, as part of the Prime Minister’s Challenge on Dementia. Ann strongly supports Dementia United.
She says: “As a person living with dementia I know only too well the challenges faced not only to receive a diagnosis of dementia but to then have to continue your life as best you can with the disease. I believe people can live well with dementia but the support has to be there throughout the entire journey no matter where you live.
“Dementia United really has the capability to turn around the lives of people with dementia.”
Professor Peter Mittler – From 1954 to my retirement in 1995 my work has focused on promoting the learning and development of people with learning disabilities, as a clinical psychologist, university teacher and researcher, government adviser, UN consultant and in my voluntary advocacy work with Inclusion International.
Following my diagnosis of Alzheimer’s Disease in 2006, I have used my professional experience in voluntary advisory work with the Alzheimer’s Society, Alzheimer’s Disease International (ADI) and above all Dementia Alliance International (DAI), a global self-advocacy organisation which has active members in the UK and in Greater Manchester.
What matters to me now is that people living with dementia should make use of their right of access to the UN Convention on the Rights of Persons with Disabilities. This was one of the demands made by DAI’s Chair Kate Swaffer at the WHO’s first Ministerial Conference on Dementia in March 2015. This goal is now supported by ADI and is being actively considered by the Alzheimer’s Society.
My aim for Devo-Manc is that its policies and services are developed within the human rights framework reflected in the Principles and specific Articles of the Convention. These are consistent with the aspirations of people with dementia in the Global Dementia Charter ‘I can live well with dementia’ and the Charter of Rights for People with Dementia and their Carers in Scotland adopted by Alzheimer-Europe for the 2016-2025 EU strategy. It can also be used by national associations to make submissions to the UN CRPD Committee when their government’s implementation of the Convention is being assessed.
“What matters to me now is that people living with dementia should make use of their right of access to the UN Convention on the Rights of Persons with Disabilities.”