Reference Group of users and carers
The Group will meet at key points in the project when we are facing key decisions about next steps or about the interpretation of findings.
Jenny developed an interest in the care of older people from a very early age when she observed her grandmother enjoying quality community care. At the age of 22 Jenny commenced her career in services for older people and she is now the manager of a specialist intensive day centre caring for people dementia. The centre has been through significant development under Jenny’s management and since the publishing of the National Dementia Strategy in 2009.
Toni is a recent past carer of her husband diagnosed in 2007 with one of the less common forms of dementia. Toni also cared for her mother for 13 years in the early stages of her husband’s illness. Toni had an extensive career in nursing covered acute and community care and education. She has written a range of books published by Age UK aimed at carers of older people.
I worked for 10 years in social care, supporting people to employ their own Personal Care Assistants at Richmond’s Personalisation Support Service. I had the privilege of making some small difference to the lives of the wonderful families I met and it gave me an insight into the challenges in social care – both from the professional side and for users.
Maria was born in 1943 in London, of Greek Cypriot parentage. Her career commenced studying law prior to moving to teaching. Having had a dyslexic son motivated Maria to move to specialise in teaching children with special needs, mainly dyslexia. Maria has used her specialist teaching in many sectors and in teacher training. Maria holds a gliding and private pilot’s licence and is now the carer of her partner Derek.
Louise has had caring responsibilities for many years. In her 20s she cared for her mother who had cancer, later she cared for her father and currently she is looking after her husband who has dementia. Caring for her mother and father required her to travel frequently between Italy and the UK. In spite of her caring responsibilities, for many years Louise worked for Aquascutum.
Margaret is a member of the MODEM dementia research project team and responsible for ensuring the involvement of people with dementia, family members, carers and the wider public throughout the project. She chairs and coordinates the Reference Group of Users and Carers and associated professionals (RGUC). Margaret is a carer of her husband who has advanced dementia.
Lucia was born in Italy, moved to England in 1958 and then to Western Australia in 1986. She returned to England in 2008 to care for her father who was diagnosed with Vascular Dementia. Lucia’s career has been varied and includes travel, media, hospitality and education. She is active in promoting and supporting carer issues and is a Carer Ambassador for Carers UK.
Janet is the CEO for Crossroads Care Kingston and Richmond. Crossroads Care provides respite care for carers, including carers of people with dementia. Janet has had extensive professional experience working within adult and community services and also in healthcare. A number of her roles have included responsibilities relating to improving the experiences of carers and developing an understanding of carers issues and rights.
U Hla Htay
U Hla Htay is a former long-term carer of his wife who had dementia. During this period he was active in promoting quality care for his wife and others with dementia. Htay has written about his dementia care experience and studied at UCL for a dementia-related MSc. Htay is active within the dementia and carer environment with Dementia UK, the Alzheimer’s Society and Carers UK.
Lynn has worked for the Alzheimer’s Society for the past 16 years and currently works as Services Manager for a local South London branch managing a range of frontline services such as Dementia Advisers, Dementia Support Workers, Carers Support Services and Peer Support Services. Lynn started her career as a general nurse, then specialised as a mental health nurse before moving into older peoples’ mental health.
Bernadette was born in Dublin in 1946. She came to London in the 60s. She held various roles with employment agencies before spending 17 years with an international executive search firm specialising in serving high technology clients. In 1988, she set up her own independent research business which she ran until 2008. Bernadette enjoys travel, socialising, reading. She volunteered for Oxfam for 11 years. She is currently a carer for her husband Dennis and an Alzheimer’s Society network volunteer.
Dennis an Anglo Indian was born in Mumbai in 1938. He came to England in 1962. Dennis worked within the NHS for 48 years, mainly involved with planning and equipping new or expanding hospitals – Chelsea & Westminster, St. Georges, St. Thomas’ and Kingston among them. After leaving the NHS he worked as a freelance consultant for 6 years. He volunteered for Princess Alice Hospice at their Kingston shop for 12 years. He enjoys all sports. In 2011, he was diagnosed with Alzheimer’s and Vascular Dementia.
Batcho gave up her career as a radiographer when her mother developed dementia and other significant health problems. Batcho is a trustee of her local Carers Centre and is actively involved with representing carers and carer issues and also supporting carers through volunteering; she facilitates events which focus on the social needs of carers
Jacquie’s husband Tony was diagnosed with early onset dementia in June 2010. Jacquie is a member of the steering group for the support group for people with early onset dementia, centred on the Neurology Department, St George’s Hospital. Jacqui has been active within Uniting Carers and its Dementia Action Alliance representative, contributing to the development of the Carer’s Call to Action.
Derek commenced his flying career in 1942 and achieved the highest RAF qualification for a flying instructor. Later he became a glider chief instructor, trainer and test pilot. Derek is renowned worldwide and has lectured internationally and written eight books on gliding and gliding instruction. He has won many prestigious awards including an MBE for services to gliding. Derek at 92 years is still flying.
My first awareness of dementia was in the late 1950s when my grandfather had vascular dementia. I trained as a secretary and met my husband, Ian, at work. On retirement, Ian was diagnosed with vascular dementia, but as this was a very early diagnosis we were told to ignore it and get on with life. Only in the last few years has he been badly affected and needed a lot of support. This has brought back distant memories of having our gas supply removed as my grandfather was turning on the gas taps on the cooker.
Marilyn trained as a secretary and worked as a PA before training in various therapies. She worked as staff therapist for Harrods, M&S, John Lewis and Bentalls. For a few years she also ran a successful ‘B and B’ at home until the accommodation was turned into a flat for her mother who came to live with the family. Marilyn is now a carer for both Peter and her mother and a regular carer for her grandsons.
Peter was diagnosed with Alzheimers’s disease in 2010. Peter originally trained as a draughtsman with Wimpy and then joined Thorne EMI and travelled to Europe, the Middle East and very often to oil rigs designing fire systems. A keen cyclist, Peter once cycled from Blackpool Tower to the Eiffel Tower for charity. Peter loved DIY, one project being the addition of a balcony to the family home.
I started work as a trainee cardiac technician at St Thomas’s Hospital. I very much enjoyed the work and it inspired me to move to social work and was trained as a careers counsellor. I met my second husband John who already had three children. With my three, that made six and we added to that by having a seventh. When I retired, I trained as a Christian Counsellor; I found the work very rewarding but I stopped last Summer because of the needs of my husband who has dementia.
I qualified as a solicitor in 1966 and after working with various firms I established my own legal practice in West Kensington. In my personal life, I helped to look after our seven children. Barbara and I know what a financial struggle it is to bring up such a large family. I have been retired now for fourteen years and try to keep active. I go to an exercise class with my wife which we enjoy and she also keeps in touch with our large family as I know my memory is not what it was.