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Dementia Care: a marginalised but important speciality!. Dr Trevor Adams University of Surrey/ Visiting Fellow, University of Brighton . I had a really nice mum and dad. . My mum (far left), my dad and myself, (next to my father).

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Dementia Care: a marginalised but important speciality!

Dr Trevor Adams

University of Surrey/

Visiting Fellow, University of Brighton



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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.


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"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."


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"Patients were herded together 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". 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."


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"Patients were herded together 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". 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."


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"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."


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"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 wardand 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."


Slide9 l.jpg

"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."


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"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."


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Looking after people with dementia affected the staff! 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,


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‘After six months in certain 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,

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)


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


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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 ...


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‘Living Well with Dementia: a national strategy (DH 2009)’

Objectives

  • Improving public and professional

    awareness an understanding of dementia.

  • Good-quality early diagnosis and

    intervention for all.

  • Good-quality information for

    those with diagnosed dementia and their carers.

  • Enabling easy access to care,

    support and advice following diagnosis.


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5. 2009)’ 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.


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12. Improved end of life care for people with dementia. 2009)’

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.


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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.


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‘Prepared to care: ‘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.

Challenging the skills gap’

All-Party Parliamentary Group on Dementia

June 2009


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‘The negative attitudes surrounding 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.

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’)


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‘anecdotal evidence that the proportion of staff ‘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.

receiving dementia care training is low, even

among those working in specialist dementia

Services’.

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


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Recommendations of ‘Prepared to Care’ ‘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.

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.


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Recommendations of ‘Prepared to Care’ ‘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.

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.


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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.


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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.


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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.


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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.


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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.


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


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Higher education provision for professionals knowledge and skills in pre-registration and post-registration training has been found.

working with people with dementia: A scoping

exercise.

David Pulsford, Kevin Hopeand Rachel

Thompson

Nurse Education Today 27, 1,

January 2007, pp. 5-13.


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National UK survey of higher knowledge and skills in pre-registration and post-registration training has been found.

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)


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‘Coverage of dementia on adult knowledge and skills in pre-registration and post-registration training has been found.

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)


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Two recent projects I have been involved with at the University

of Surrey are:

  • the use of web based material to promote learning in general nurses about dementia care.

    http://www.scie.org.uk/publications/elearning/mentalhealth/index.asp

    (2) SCEPTrE Fellowship on develop freely available dementia care learning materials on YouTube.

    http://sceptrefellows.pbworks.com/Trevor-Adams


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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.


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