Dementia Care: a marginalised but important speciality! Dr Trevor Adams University of Surrey/ Visiting Fellow, University of Brighton 1

I had a really nice mum and dad. 2

3 My mum (far left), my dad and myself, (next to my father). My dad died 5 months later. My mum remarried in 1969 and developed dementia in the late 1980s. I lived 300 miles away from her and found it difficulty to accept how she had become. Dementia arises within the family and is set against a backdrop of all that has happened in that family. Dementia is a family affair. Butlins, Pwllheli, August 1965

Dementia Care Nursing Ideas and theories that guide practice Government policy Educational/ training implications 4

5 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

6 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

7 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

8 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

9 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

10 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

11 "Patients were herded together in old, bleak, neglected buildings with large dark wards closely placed rows of beds, little furniture and frightening inactivity, multiple regulations curtail the patient’s freedom and reduce their contact with the outside world. They may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often nonexistent. Bathing is supervised and may take place in a communal bathroom. Visiting is restricted to a few hours a week and children are often prohibited. To visit some wards for the elderly is to visit the annex to the mortuary, rows of people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die". A. Whitehead (1969) “In the Service of Old Age: The Welfare of Psychogeriatric Patients."

12 Looking after people with dementia affected the staff!

‘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) 13

Dementia Care Nursing Ideas and theories that guide practice Government policy Educational /training implications 14

15 There was a gradual change from medical/institutional approaches towards people with dementia to a more socially sensitive approach.

Medicalisation of dementia Disease - medical/cognitive paradigm Diagnosis - changed sense of self Stigmatisation - seen as different from the norm Marginalisation - placed outside communities Institutionalisation - located in total communities 16

Medicalisation of dementia Disease - medical/cognitive paradigm Diagnosis - changed sense of self Stigmatisation - seen as different from the norm Marginalisation - placed outside communities Institutionalisation - located in total communities Social model of dementia Person-centred - focuses on people’s experience of dementia Relational - recognises the contribution of others and the rest of society Inclusive - highlights increased inclusion of people with dementia 17

People’s experience of dementia = physical health + neurological impairment + biography + malignant social psychology Person-centred care Tom Kitwood Quality dementia care arises from a good relationships between person with dementia, family carer(s), and paid-for carer. Relationship centred care Mike Nolan People’s experience of dementia arises out of biological, psychological, social, and political systems. Family systemic care Trevor Adams 18

Dementia Care Nursing Ideas and theories that guide practice Government policy Educational /training implications 19

20 There has been a long line of Government reports that have touched on dementia, though the Department of Health has now produced a national strategy. It identified 17 objectives for the future of dementia care...

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. 21 ‘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. 22

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. 23

Dementia Care Nursing Ideas and theories that guide practice Government policy Educational /training implications 24

25 The All Party Parliamentary Committee on Dementia, ‘Prepared to care: Challenging the skills gap’ (July 2009), examined the availability of skills in the social care workforce and made various recommendations about how these should be developed.

‘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’. (‘Prepared to care: Challenging the skills gap’) 27

‘anecdotal evidence that the proportion of staff receiving dementia care training is low, even among those working in specialist dementia Services’. (‘Prepared to care: Challenging the skills gap’) 28

29 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.

30 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.

31 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.

32 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.

33 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.

34 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.

35 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.

36 A deficiency in the extent to which dementia- related knowledge and skills in pre-registration and post-registration training has been found.

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’. (Pulsford et al 2007) 38

39 ‘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’. (Pulsford et al 2007)

Two recent projects I have been involved with at the University of Surrey are: (1)the use of web based material to promote learning in general nurses about dementia care. h/index.asp (2) SCEPTrE Fellowship on develop freely available dementia care learning materials on YouTube. 40

41 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.