Dementia Care: a marginalised but important speciality! Dr Trevor Adams Honorary Fellow University of Brighton 1

2 This is a photo of my mother (far left ), my father (far right) and myself (next to my father). It was taken at Butlins in August My father died five months later, and my mover later remarried. My mother developed dementia in the late 1980s. The photo is significant because dementia arises within the family and is set against a backdrop of all that has happened in that family. Dementia is a family affair.

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‘After six months in certain hospitals, there are ways in which psychiatric nurses are no longer like ordinary people. Their attitude to mental illness changes - as it does to old age, to cruelty, to people’s needs, and to dying. It is as if they become numbed to these things.’ (Sans Everything 1967) 4

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Objectives 1: Improving public and professional awareness an understanding of dementia. 2: Good-quality early diagnosis and intervention for all. 3: Good-quality information for those with diagnosed dementia and their carers. 4: Enabling easy access to care, support and advice following diagnosis. 9 ‘Living Well with Dementia: a national strategy (DH 2009)’

5: Development of structured peer support and learning networks. 6: Improved community personal support services. 7: Implementing the Carers’ Strategy. 8: Improved quality of care for people with dementia in general hospitals. 9: Improved intermediate care for people with dementia. 10:Considering the potential for housing support, housing- related services and telecare to support people with dementia and their carers. 10

12: Improved end of life care for people with dementia. 13: An informed and effective workforce for people with dementia. 14: A joint commissioning strategy for dementia. 15: Improved assessment and regulation of health and care services and of how systems are working for people with dementia and their carers. 16: A clear picture of research evidence and needs. 17: Effective national and regional support for implementation of the Strategy. 11

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‘Prepared to care: Challenging the skills gap’ All-Party Parliamentary Group on Dementia June

‘The negative attitudes surrounding dementia, which incorporate ageism, have acted as a barrier to workforce development in terms of individual practice and public policy. The mistaken, but lingering, belief that attempts to improve well-being in people with dementia are hopeless has resulted in little priority being assigned to developing a workforce with appropriate skills’. 14

‘anecdotal evidence that the proportion of staff receiving dementia care training is low, even among those working in specialist dementia Services’. 15

16 Recommendations of Prepared to Care’ 1. The Group urges the Department of Health to prioritise early work on achieving Objective 13 of the National Dementia Strategy for England – ‘An informed and effective workforce for people with dementia.’ 2. We need to move towards a situation where the workforce as a whole demonstrates effective knowledge and skills in caring for people with dementia.

17 3. It is important that workforce development programmes are carefully designed to meet the needs of care staff and ultimately improve the lives of people with dementia. 4. There must be greater regulation of dementia care trainers to combat the current inconsistencies in quality. We recommend the development of a kitemarking system. 5. There must be greater recognition of the level of skill required to provide good quality dementia care as well as the importance of maximising the quality of life of individuals who develop dementia.

18 6. It is vital to develop effective working relationships between commissioners and service providers that are based on a good knowledge of what good dementia care is and what is required to provide it. 7. Good dementia care is reliant on well-integrated working between social care and healthcare.

Higher education provision for professionals working with people with dementia: A scoping exercise. David Pulsford, Kevin Hope and Rachel Thompson Nurse Education Today 27, 1, January 2007, pp

National UK survey of higher education provision related to dementia care. ‘coverage of dementia within the mental health branch of pre-registration nursing programmes is very variable, and may be related to the presence of an experienced and committed lecturer within the HEI’. 20

21 ‘Coverage of dementia on adult branch programmes is limited, and sometimes non- existent, despite reported deficits in the ability of general nurses to work effectively with people with dementia’.

Two recent areas I have been involved with at the University of Surrey are: (1)the use of web based material to help teach general nurses about dementia care. h/index.asp (2) SCEPTrE Fellowship on develop freely available dementia care learning materials on YouTube. 22