Challenging the perceptions of dementia care how can we do things differently
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Challenging the perceptions of dementia care: how can we do things differently?. Dr Roger Bullock Kingshill Research Centre. The National Dementia Strategy. 4 in 10 diagnosed 2009 Big launch Slow start 2011: 4 in 10 diagnosed. Why?. Primary care needs education

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Challenging the perceptions of dementia care how can we do things differently

Challenging the perceptions of dementia care: how can we do things differently?

Dr Roger Bullock

Kingshill Research Centre


The national dementia strategy

The National Dementia Strategy

4 in 10 diagnosed

2009 Big launch

Slow start

2011: 4 in 10 diagnosed


Challenging the perceptions of dementia care how can we do things differently

Why?

Primary care needs education

Services need more investment

Need more public education

Spend lots on TV advertising

Actually a lot has happened, this is just a poor performance indicator


Smoke and mirrors

Smoke and mirrors

What is dementia?

What is Alzheimer’s disease?

Is this normal ageing?

Have we got the right strategy?

Is 4 out of 10 actually quite good?


Eras of dementia

Eras of dementia

Senility – lost in the ageing process

Dementia – through the biomedical looking glass, where the person becomes invisible

Personhood – where brain meets body

Disability – empowering to ask for same as the able bodied

Citizenship – having an equal position in society


Biomedical

Biomedical

Incurable brain disease

Decline and dependency

Loss of person

Aggression and difficult behaviour

Plaques and tangles

Burden on healthcare


Biomedical explanations

Biomedical explanations

The cholinergic hypothesis

BPSD

Visual hallucinations and acetylcholine

Increased tangles in the frontal lobe and psychosis – but no dopamine loss

Not much other physical evidence for “BPSD”

The amyloid hypothesis


Mild cognitive impairment

Mild cognitive impairment

  • Or prodromal AD

  • How useful is it?

  • Do people want it – how early is early?

  • Where are we going with this?


Response has been

Response has been

Research for a cure, particularly AD

Exaggeration of benefits of any treatments

Over complication of diagnostic tests

Health payers created new rules for this particular long term condition

NICE perpetuated them (and research perpetuates NICE)

Primary care think it is all very difficult


Is it difficult

Is it difficult?

A concept of brain failure…

  • Brain development – good diet, education

  • Brain maintenance – use it, don’t abuse it, cardiovascular health

  • Brain impairment – vascular disease, dietary failures (homocysteine), obesity, lack of exercise, diabetes

  • Brain failure – pathology (which becomes a risk factor), vascular disease, inflammation


This is primary care

This is primary care

Childhood and adolescent development

Cardiovascular protection

Weight advice

Diabetes control

Holistic care

Management of morbidity of ageing

Managing dementia – with or without the label


And public health

And public health

Illiteracy and poor diet

Smoking, drugs and alcohol

Obesity

Diabetes

Lack of exercise

Supplements (e.g. folic acid)


Simple solutions 1

Simple solutions (1)

  • Health education at school level – even intergenerational education?

  • Support Jamie Oliver

  • Maintenance of good physical health

  • Exercise

  • Cognitive stimulation as you age – and as therapy


Current specialist services

Current specialist services

Wait for the event

Dominated by “diagnosis” and care programmes – seen as needed

Concentrate on difficulties

Offer crisis response

Monitor decline

Support the carers in many ways, but not always the individuals – reassurringly expensive

Promote dependence, not recovery


Issues

Issues

95% of referrals are AD – memory clinics are self selecting

Most AD patients and families know

Other diagnoses are not always complex

Could this be delivered in the current primary care context? Is it already?


Simple solutions 2

Simple solutions (2)

  • Engage primary care

  • Use the drugs going off patent as an opportunity to get this right

  • Have a memory clinic in every surgery i.e. make it a normal experience


Dementia

Dementia

Latin for “loss of mind”

Definition driven by memory

Actually is a clinical stage, where a functional end point is reached

Has multiple causes

Functional decline relates more to executive disorders

Cannot be reversible – cognitive impairment can


Challenging the perceptions of dementia care how can we do things differently

Cortical Sites of Origin for the Dorsolateral, Orbitofrontal, and Anterior Cingulate Frontal Subcortical Circuits


Location of the lesion

Location of the Lesion


Personhood

Personhood

The individual counts

They need comfort, attachment, inclusion, identity and occupation – ‘wellbeing’

Helpful and holistic

Improved the care context

Positioned an individual within society


But is it enough

But is it enough?

It continues to be passive and unidirectional – putting a person in the position of dependence on others

Tends to promote the status quo rather than growth

Has reached an impasse….


Personhood s dilemmas

Personhood’s dilemmas

Can collude with the biomedical model. Status is still conferred by other as we still are not clear what people with dementia want. It is person centred, not person directed

Individual focus does not always have cultural relevance and talks of “the dementia experience” – assuming a homogeneity that does not exist


Even more

Even more…

It uses apolitical language which is intuitively appealing

Has not impacted society’s image of frail, cognitively impaired and dependent people who get nasty and cost money

So needs to move towards making people with dementia active and vocal members of society


Citizenship

Citizenship

The relationship people have with the state

Based on power, personhood is not

Has exclusionary tendencies and assumes cognisance and ability to work/contribute (Lister 2003)

Denies difference (Higgs 1997)


Citizenship1

Citizenship

The relationship people have with the state

Based on power, personhood is not

Has exclusionary tendencies and assumes cognisance and ability to work/contribute (Lister 2003)

Denies difference (Higgs 1997)


Need to make citizenship a practice

Need to make citizenship a practice

Achieved in individuals through the power dynamics of everyday talk and action (Barnes 2004)

Expression of human agency (Lister 2003)

Fundamental to the way of being with others (Isin 2007)

Creates norms, values and practices to solve problems for the individual and others


National dementia strategy

National dementia strategy

Intervention by the state

Promotes better public knowledge (citizenship)

Hinges around early diagnosis (biomedical) and the need for a label

Intends to enable “Living well with dementia” (personhood)

Needs to aim to promote dementia in society, not improved care for people with dementia


So need to shift current paradigms

So need to shift current paradigms

Agree what early diagnosis means and what it triggers. People with dementia then require a move from:

  • Comfort to growth

  • Identity to identities

  • Occupation to purpose

  • Attachment to solidarity with others

  • Love to freedom from discrimination


Challenging the perceptions of dementia care how can we do things differently

How?

Encourage people with dementia to speak out in a positive way

Enable people with dementia to act in public positions

Look at research on what people want, not just focus on cures

Commission services that promote citizenship

Challenge some aspects of the law e.g. HRA


Challenging the perceptions of dementia care how can we do things differently

Care

A species activity that includes everything we do to maintain, continue and repair our world so that we can live in it as well as possible

It includes our bodies, our selves and our environment, all of which we seek to interweave in a complex life-sustaining web

Citizenship depends on care


Challenging the perceptions of dementia care how can we do things differently

Care

Facilitation of care promotes citizenship, so not only people with dementia and their carers need a voice, professionals do too

Dementia strategy arose because people with dementia felt services were not working - a mismatch of high expectation that something should be done and a low expectation anything will be


All services need to

All services need to…

  • Build on the ethics of care:

    Attentiveness (interdependence means others matter, more so the vulnerable)

    Responsibility (all contexts are recognised)

    Competence (services are delivered)

    Responsiveness (alert to balance shifts)

    Trust

  • Promote citizenship above dependency


A new citizenship dementia strategy charter

A new citizenship dementia strategy (charter)

Education about the brain from an early age

Understanding that life choices contribute to future brain failure – as with other organs

Including preservation of cognition in the well being strategies

Creating dementia friendly environments, including employment opportunities

Looking at societal solutions e.g. intergenerational schools


Simple solutions 3

Simple solutions (3)

Consider dementia as a long term condition

Challenge the expectations, including legal and societal to build a citizenship model

Plan to make a long term difference


How to assess in the new model

How to assess in the new model

Context

Abilities (reverse of difficulties)

Intrapersonal understanding

History of the person (Life story)

Interpersonal relationships

Societal responses


Dementia services

Dementia services?

Need a partnership of people with complimentary skills who have the time to gain full contextual understanding

Have to understand the full physical, social and psychological aspects of an individual pertaining to their place in society

If aiming at early detection, must use their findings to promote the person within society


New outcomes need to be set

New outcomes need to be set

Individual levels

Better commissioning expectations

Societal acceptance

Moral philosophers employed in the NHS?

Ultimately we need increase in autonomy, based on a personal, family and societal reaction augmented by benefit from any potential future drug intervention


Simple solutions 4

Simple solutions (4)

  • Keep the biomedical model in context – do not wait for more specialist drugs

  • Involve public health to bridge the health/social divide

  • Set all encompassing local targets

  • Make living well with dementia a reality


Eras of dementia1

Eras of dementia

Senility – lost in the ageing process

Dementia – through the biomedical looking glass, where the person becomes invisible

Personhood – where brain meets body

Disability – empowering to ask for same as the able bodied

Citizenship – having an equal position in society


Thank you for your attention

Thank you for your attention


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