the lewy body society society ambassador council member associate 1 © peter j s ashley peter j s...

The Lewy Body Society

Society Ambassador

Council Member

Associate

1© Peter J S Ashley

Peter J S Ashley


Member of the Expert Reference Group

The Dementia Strategy

Advisor to the National Audit Office (NAO)

Report on Dementia

Board Member for the NICE/SCIE

Dementia Guideline

THE DATE

20th JULY 2000

“D DAY”

DiagnosisDementia with Lewy

Bodies (DLB)

- OLDER PEOPLE -A CONCORDAT BETWEEN HEALTH AND SOCIAL CARE?



CATALYSTS

1. Dementia UK Report – Alzheimer’s Society/King’s College, London/LSEA report to the Alzheimer’s Society on the prevalence and economic

cost of dementia in the UK produced by King’s College, London and London School of Economics.

2. Dementia – NICE/SCIE Guideline (not including TA 111)

NICE/SCIE Guideline supporting people with dementia and their carers in health and social care.

3. National Audit Office Report – NAOImproving services and support for people with dementia.

4. National Dementia StrategyLiving well with dementia: A National Dementia Strategy: Putting People First – Department of Health


Dementia UKSome basic facts

683,597 people with dementia in the UK over 65 in 2007

This represents 1 in every 88 of the entire UK population

Could be a slight under estimate as it excludes certain groups

940,110 by 2021 and 1,735,087 by 2051

At the moment early onset under 65 judged to be rare but this may not be true

Total cost estimated at £17.03 billion per annum

Failure to support people with dementia and their carers has been highlighted by Wanless (social care 2006) and CSCI (report

2007)


0

200000

400000

600000

800000

1000000

1200000

1400000

1600000

1800000

2000000

2011 2021 2031 2041 2051

100 & over

95-99

90-94

85-89

80-84

75-79

70-74

65-69


Alzheimer'sVascularMixedLewy bodiesFronto temporalPDDOther

62%17%

10%

4% 2% 2% 3%



The NICE/SCIE Dementia Guidelines

Some key points 1

•Health and social care practitioners should always seek valid consent from people with dementia. If the person lacks the capacity to make a decision, the provisions of the Mental Capacity Act 2005 must be followed.

•Health and social care managers should coordinate and integrate working across all agencies involved in the treatment and care of people with dementia and their carers.•Care managers/coordinators should ensure the coordinated delivery of health and social care services for people with dementia.

•Structural imaging should be used to assist in the diagnosis of dementia, to aid in the differentiation of the type of dementia and to exclude other cerebral pathology.



The NICE/SCIE Dementia Guidelines

Some key points 2

•Magnetic resonance imaging (MRI) is the preferred modality to assist with early diagnosis and detect subcortical vascular changes, although computed tomography (CT) scanning could be used.•Health and social care managers should ensure that all staff working with older people in the health, social care and voluntary sectors haveaccess to dementia-care training that is consistent with their role and responsibilities



The NAO Report

Some key points 1

Better training and use of GP’s and integration with other services

Primary Care Trust should work on behalf of health and social care in commissioning services

The Royal College of Psychiatrists should work with the British Geriatrics Society and Association of Directors of Social Service for developing multiprotocol services for dementia

Memory Services should be set up in every area

Better training in Acute hospitals



The NAO ReportSome key points 2

CMHT’s need to be formalised and expanded with total integration of Health and Social Care Services within them

The voluntary sector should be more integrated in working with health and social care possible through CMHT’s

The Department of Health should champion the development of a strategy for dementia as quickly as possible

PCT should set up local pathways based on the NICE/SCIE Guidelines ‘Life checks’ for all people over the age of 65 should be introduced

and many more......................



The Dementia Strategy

Where did the Strategy have its origins?

Pressure from the Alzheimer’s Society

People with Dementia

Carers

Other leading Dementia bodies

The Dementia UK Report (Alzheimer’s Society et al)

NICE/SCIE Guideline

National Audit Office Report on Dementia


Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec

2007 A A/E A/E Start E

E

2008 E D D D D DC C C C R R? R?

2009 R? R Now

TIMETABLE

Key Description

A Announcement made (Ivan Lewis MP)

E ERG Sub Committees develop basic strategy

D ERG Group + Dept. of Health create draft

C Public Consultation period (CSIP)

R Release of final Dementia Strategy


GROUP TOTAL MEMBERS

PEOPLE WITH DEMENTIA

CARERS

Core Reference Group 14* 1 (DW) 1* (BP)

Sub Group 1 12 1 (KT) 1 (LT)

Sub Group 2 13 1 (KC) 1 (JC)

Sub Group 3 15* 1 (PJSA) 1* (BP)

Dept. of Health Group 18 0 0

TOTAL 71* 4 3*

* 1 Carer served on two Groups



1. Ensure better knowledge about dementia and remove stigma.2. Ensure early diagnosis and treatment.3. Develop services to meet changing needs better.4. Easy access to care support and advice after diagnosis.5. Develop structured peer support and learning networks.6. Improve community personal support service for people living at

home.7. Implement a new deal for carers.8. Improve the quality of care for people with dementia in hospitals.9. Improve intermediate care for people with dementia.10. Consider housing support, housing-related services, technology and

telecare.11. Improve the quality of care for people in care homes.12. Improve 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. Improve assessment and regulation of health and care services.16. Provide a clear picture of research about the causes and possible

future treatments of dementia.17. Effective national and regional support for local services to help

them carry out the STRATEGY.

AN EXTRA £150 MILLION TO BE SPENT OVER THE NEXT TWO YEARS



As a member of the EXPERT REFERENCE GROUP what I also wanted to see (as did others):

1. Much more about support for early stage dementia patients.2. Closer integration of Health and Social Care – CARE TRUSTS3. Expert one on one support for people with dementia and their carers

particularly in the mid and late stages of the disease.4. Recognition of, and greater support for Admiral Nurses; they could be

the solution to 3) above given the opportunity and investment by government.

5. Very much clearer statements on research and investment therein.6. Ties into the Mental Capacity Act 2006 and the rights of the

individual.

THESE AND MANY MORE PROPSALS WERE MADE BY THE ERG AND IGNORED.


KEY ELEMENTS FOR CONSIDERATION

1. Diagnosis – Primary Care – Memory Clinics – Secondary Care – Peer support

2. Dementia Type – Prognosis + Rate and Nature of Decline

3. Age – A number isn’t always the only significant consideration – forget 65

4. Genetic Profile – Might be significant

5. Educational background

6. Family and dependants – Nature of care needs

7. Social Support – How this might feature in an evolving Care Plan

8. Co-morbidities – Related or unrelated – maybe ‘functional’ mental health

9. Personal Attitudes – Beliefs in one’s own individuality

10. Legal Considerations – Mental Capacity Act 2006, LPA’s Advanced Directives, Wills, etc..

11. Care Homes – Care Homes versus Care at Home

12. End of Life Issues


COMMENTS ON CURRENT SITUATION

1. Training poor in primary care (GP’s) and Acute Care (General Hospital)

2. Diagnosis too shallow and does not involve enough specialized consultants (memory clinics alone aren’t the answer)

3. Lack of joined up Primary, Mental Health and Acute Services

4. Lack of joined up Health and Social Services

5. CMHT aimed to solve 4) not working fully – will they ever be?

6. Lack of differentiation between early onset, mild, moderate and late stage dementia and mild cognitive impairment

7. Cholinesterase drug rulings give great cause for concern (£2.50 per day)

8. Means testing of dementia services unlike cancer (Government white paper expected)

9. Cognitive testing inappropriate at certain levels – MMSE not enough

10. Group therapy for early onset for mild/moderate stages – currently being disbanded in some areas; essential day centers for treatment and therapy.


THE QUESTION – IS THERE:

A CONCORDAT BETWEEN HEALTH AND SOCIAL CARE?

THE ANSWER IS:

NO!


• Primary Care Practitioners – GP’s• Secondary Care Practitioners – Consultant Psychiatrist

• Ideally Consultant Neurologist and• Ideally Consultant Psychologist and• Ideally Consultant Radiographer

• ‘Memory’ Clinics• Peer Support Services (Day centre groups)• CMHT (Joint Teams of Health and Social Care not Health or Social Care)• Regular review by all of the above at varying intervals• The third sector (voluntary sector) should become more involved

Constant feedback is essential across all of the above including the patient and if they agree their ‘carer’ or a third party*

* It should be noted that an individual retains the exclusive rights to their own information unless deemed to have lost capacity when a Lasting Power of Attorney (if it exists) or the Court of Protection order takes precedence. Other rules exist in the case of people who are sectioned or have lost their liberty through criminal acts.


And finally lest we forget Health is Free at the point of delivery (I think). Social Care is Means Tested. The principle of Care Trusts are far from resolved. CMHT’s are still not truly operational. Front line staff in health and social care are dedicated,

but! The nearer the top the greater the problem.

Where does this leave people with dementia like me?


THIS PRESENTATION WILL BE AVAILABLE FOR DOWNLOAD

ON

Website:

http://www.innovationsindementia.org.uk/

I can be contacted at:[email protected]



I’M

NOT

DYING FROM DEMENTIA

™


the lewy body society society ambassador council member associate 1 © peter j s ashley peter j s...

Documents

care of people

dementiacare training

diagnosis of dementia

type of dementia

dementia nicescie guideline

social care services

social care managers

nicescie dementia guidelines