My husband was diagnosed with early onset dementia in June 2010. Since then I have become his principal carer.
We live in South West London and I am on the steering group for the support group for people with early onset dementia, which is centred on the Neurology Department at St George’s Hospital. Membership of the group cuts across six of the CCGs in SW London and it has been very beneficial to use our network to share experiences and information on different practice in clinical and social care.
Since the diagnosis we have focused on the positive as far as possible. Tony and our two sons have benefited from the work of Dementia Adventure and participated in a Thames Barge sailing trip. We are regular participants in the Royal Academy ‘In Mind’ programme.
I was active in the work of Uniting Carers, and represented the organisation on the Dementia Action Alliance. I contributed to the development of the Carer’s Call to Action and I think it is disappointing that Dementia UK has more recently decided it must focus its resources and has cease support for this strand of its work as Uniting Carers was the only national organisation with a specific focus on support for carers of people suffering from dementia. I am a regular contributor to the CARDS (Care and respect for persons with dementia) programme which is offered by St George’s University. I make presentations to final year nurses, to PG DIP students from various disciplines and also to final year physiotherapists.
My own professional background is in teaching, teacher education and education policy. I continue to work 0.3 fte in my role as Policy and Liaison Officer for the Universities’ Council for the Education of Teachers.