dementia and severe sight loss - understanding people’s experiences, needs and aspirations: the...
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Dementia and severe sight loss - understanding people’s experiences, needs and aspirations: the case for quality careSube Banerjee
Professor of Mental Health and Ageing, Institute of Psychiatry, King’s College London
Dementia – the case for action
Growth of numbers of people with dementia
The World Alzheimer Report (2009) estimated that there are:
• 35.6 million people living with dementia worldwide in 2010
• Increasing to 65.7 million by 2030
• 115.4 million by 2050
Worldwide cost of dementia
• The societal cost of dementia is already enormous.
•Dementia is already significantly affecting every health and social care system in the world.
•The economic impact on families is insufficiently appreciated.
• The total estimated worldwide costs of dementia are US$604 billion in 2010.
• These costs are around 1% of the world’s GDP
0.24% in low income
1.24% in high income
Worldwide costs of dementia
The World Alzheimer Report (2010) estimated that:
• If dementia care were a country, it would be the world’s 18th largest economy
Bringing in back home, the local case - Dementia UK Report simple messages – common and costly
Numbers with dementia 700,000
In 30 years – doubling to 1.4 m
UK dementia cost - £17billion pa
In 30 years – tripling £51billion pa
0
5
10
15
20
25
30
35
40
65-9 70-4 75-9 80-4 85-9 90-4 95+
female
male
total
Population prevalence (%) of dementia
by age
Knapp et al (2007)
Dementia UK Report simple messages – under-recognised, under-treated
0
20
40
60
Variation in treatment and diagnosis of
dementia in the UK
Variation in treatment and diagnosis of
dementia across Europe
24x variation
National Dementia Strategy - England
Published 2 Feb 2009
Five year plan
17 interlinked objectives
£150 million extra funding
Four key themes
Improving awareness
Early and better diagnosis
Improved quality of care
Delivering the Strategy
Objectives of the National Dementia Strategy – substantial progress in all
Severe sight loss in dementia, the case for action
Background
12% of over 75s are visually impaired
6% of over 65s have dementia
Higher prevalence of visual impairment in dementia
Co-existence of cognitive and visual impairments:
Complicate detectionCompound the impact of the respective conditions Complicate coping and management
Lack of formal research in this population
Aims & Objectives
Investigate the perceived impact of serious visual impairment and dementia on daily living and quality of life
Explore needs for support, coping strategies and pathways to care
Formulate strategies to address the needs of older adults with both conditions
Qualitative research design
In-depth individual interviews
Purposive sampling for diversity
Participants recruited from services for people with visual impairment and dementia
52 interviews conducted: 17 older adults with both conditions, 17 family carers, 18 care professionals
Thematic analysis by two researchers
Five core themes
Help to explain the complexity of the needs of older people with joint visual impairment and dementia:
safety ‘v’ independence
heightened disorientation and distress
visual hallucinations
vulnerability to isolation
difficulty in accepting multiple losses
Safety ‘v’ independence
Inability to manage and impaired judgement
The neighbours were worried about her because she was really an accident waiting to happen because she couldn’t see properly, but was still insisting on going out, getting on the bus, doing all sorts of things. (Teresa’s daughter)
Limits on activities and conflict in the caregiver relationship
I do get a lot of enjoyment from my workshop, no, it’s more than enjoyment, I would be thoroughly miserable if I was kept out of it. Well it would bust our marriage up I think if that happened. (Robert)
Excessive risk minimisation
You see them [in care homes] being herded about, put in wheelchairs even though they can walk but it’s safer for the nursing home to put them in a wheelchair and push them from a to b. (Senior Occupational Therapist)
Heightened disorientation and distress
The experience of visual impairment and dementia together created a profound sense of disorientation
Unable to orientate self using memory or visual cues
Because of his memory he forgets where he is quite often, he forgets he’s in his chair or his bed. He doesn’t visually recognise the house when he gets up in the morning after he’s been to sleep, and he may not recognise where he is because of the memory problems. (Clarence’s wife)
Anxiety manifested in restless and disruptive behaviour
High demands on family carers
Visual hallucinations
1/3 sample suffered from hallucinations
Increased disorientation and distressWell it is disorientating. I mean now you’ve hit on the key word I think that I’m suffering from. Because life can be very unsure, put it that way…See when you have lived all your life with your sight you know that what you see is something definite or whatever the term is. But when it’s an hallucination it’s awfully difficult for you to say well that’s silly, no it can’t be.” (Donald)
Carers learned to adopt a non-confrontational approach
Vulnerability to isolation
Unable to pursue hobbies / interests
Carers responsible for providing stimulationBut you see if he’s left alone he has no way of entertaining himself because you know, unless he’s listening to radio like he is now there is nothing that he can do because he can’t see to read and he forgets anyway where he is so I think they need a lot of one on one care. (Michael’s wife)
Day centres valued source of social interaction
Importance of one-to-one interaction
Difficulty in accepting multiple losses
Acceptance important coping strategy
Multiple losses substantial threat to self
Every day really, there was another thing that he couldn’t do any more and in the end he just was feeling totally useless. I mean he used to do all the garden and then he would still want to do that even though he couldn’t see and he would like plant plants one day and the next day he thought they were weeds and was pulling them up and things like that you know, it’s really sad. He was just so desperate to still lead as normal a life as possible. (Donald’s daughter)
Denial common in this group
Family caregivers faced exceptional demands
• Many wholly dependent on their relative for orientation and stimulation, as well as their everyday care.
• Many caregivers were physically exhausted, but found it difficult to leave the older person for even brief periods of time.
The problems of orientation and the constant calling out and the demands on the carers and I think that if that can be recognized by social services and perhaps in those circumstances these people need more support because it’s so constant, it’s all the time, it’s throughout the night, they are constantly, constantly called, they get tired. (Community Psychiatric Nurse)
Recommendations
High level of unmet need in a growing population.
Visual impairment exacerbates confusion in Alzheimer’s disease
Optimise visual input - adequate eye care and lighting
Clear verbal communication – enhance orientation and confidence in the environment
One-to-one contact - raising awareness to time, place and person
Sharing information/skills - for accurate assessment of risk to promote independence
Management of hallucinations
Carers respite services
Explore role of counselling and support
Good-quality early diagnosis and intervention for all
Services for early diagnosis and intervention in dementia for all
Working for the whole population of people with dementia
ie has the capacity to see all new cases of dementia in their population
Working in a way that is complementary to existing services
About doing work that is not being done by anybody
Service content
Make diagnosis well
Break diagnosis well
Provide immediate support and care immediately from diagnosis
95% acceptance rate 94% appropriate referrals
18% minority ethnic groups
19% under 65 years of age
87
88
89
90
91
92
baseline 6m
Improvement in self-rated quality of life
92
94
96
98
100
baseline 6m
Improvement in carer-rated quality of life
0
5
10
15
baseline 6m
Decrease in behavioral disorder
010203040506070
%
2004 2006 2008
Proportion of new cases diagnosed
Banerjee et al 2007, IJGP
Only a third at most of people with dementia receive any specialist health care assessment or diagnosis
When they do, it is:
Late in the illness
Too late to enable choice
At a time of crisis
Too late to prevent harm and crises
0%
20%
40%
60%
80%
100%
The fundamental problem - now
80% of people with dementia receive specialist health care assessment or diagnosis
When they do, it is:
Early in the illness
Early enough to enable choice
In time to prevent harm
In time to prevent crises
0%
20%
40%
60%
80%
100%
The solution
Living well with dementia in care homes
Reduced use of antipsychotic medication
Ministerial review of use of antipsychotics in dementia
Published November 2009
Comprehensive review
Negative effects
Positive effects
Analysis of reasons for current clinical behaviour
Formulate practical clinical plan to deal with problems found
New data and extrapolation
NHS Information Centre for Health and Social Care completed analyses using the IMS Disease Analyzer
Practices from England, Wales, Scotland and Northern Ireland a representative UK sample by age and sex.
1,098,627 patients 12-month period from 1 April 2007 to 31 March 2008.
192,190 people (17.5%) over the age of 65
10,255 (5.3%) received a prescription for an antipsychotic.
Estimates for the report
25% people with dementia receiving an antipsychotic
180,000 people with dementia receiving an antipsychotic
Includes people with dementia at home as well as people in care homes
Summary of risks and benefits at a population level of the use of atypical antipsychotics for BPSD in people with dementia
data suggest that treating 1,000 people with BPSD with an atypical antipsychotic drug for around 12 weeks would result in
an additional 91–200 patients with behaviour disturbance showing clinically significant improvement
an additional 10 deaths;
an additional 18 CVAEs,
• around half of which may be severe;
no additional falls or fractures; and
an additional 58–94 patients with gait disturbance.
For UK
1,800 deaths per year
1,620 severe CVAEs
Analysis of why
Symptom of underlying system failure in health and social care for people with dementia
1960s response to a 21st century challenge
Why lack of response to clear warnings
It is complicated
System does not allow change
• Knowledge
• Attitudes
• Provision
Need to treat the cause as well as the symptoms
Action
What are the levers for change?
Operating Framework 2008/9
‘dementia:
providing people with dementia and their carers the best life possible is a growing challenge, and is one that is becoming increasingly costly for the NHS. Research shows that early intervention in cases of dementia is cost-effective and can improve quality of life for people with dementia and their families. The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services ’
Operating Framework 2008/9
‘dementia:
providing people with dementia and their carers the best life possible is a growing challenge, and is one that is becoming increasingly costly for the NHS. Research shows that early intervention in cases of dementia is cost-effective and can improve quality of life for people with dementia and their families. The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services ’
Operating Framework 2009/10
60. There have been a number of important developments in the last year within the context of High Quality Care for All that will help PCTs determine how they develop and implement their local plans. These cover the following areas:
alcohol; dementia; end of life care; mental health; military personnel, their dependants and veterans; mixed-sex accommodation; people living in vulnerable circumstances; and people with learning disabilities.
62. The National Dementia Strategy will be a comprehensive framework aimed at driving up standards of health and social care services to improve the quality of life and quality of care for people with dementia and their carers. PCTs will want to work with local authorities to consider how they could improve dementia services.
3.30 Nationally, there is a range of tools to assist PCTs and specialised commissioning groups in delivering their priorities as world class commissioners. These include, but are not limited to:
the developing National Support teams (NST) for health inequalities, tobacco, alcohol, infant mortality, teenage pregnancy, sexual health, vaccinations and dementia; and
Revision to the Operating Framework for the NHS in England 2010/11
One of only two new specific priorities
13. During the recent sign-off of SHAs plans, two areas stood out as not being given sufficient emphasis. The first is ensuring that military veterans receive appropriate treatment… The second area is dementia. NHS organisations should be working with partners on implementing the National Dementia Strategy. People with dementia and their families need information that helps them understand their local services, and the level of quality and outcomes that they can expect. PCTs and their partners should publish how they are implementing the National Dementia Strategy to increase local accountability for prioritisation.
Revision to the Operating Framework for the NHS in England 2010/11
One of only two new specific priorities
13. During the recent sign-off of SHAs plans, two areas stood out as not being given sufficient emphasis. The first is ensuring that military veterans receive appropriate treatment… The second area is dementia. NHS organisations should be working with partners on implementing the National Dementia Strategy. People with dementia and their families need information that helps them understand their local services, and the level of quality and outcomes that they can expect. PCTs and their partners should publish how they are implementing the National Dementia Strategy to increase local accountability for prioritisation.
Quality outcomes for people with dementia: building on the work of the National Dementia Strategy (DH, 2010)
‘There are four priority areas for the Department of Health’s policy development work during 2010/11 to support local delivery of the Strategy. These areas provide a real focus on activities that are likely to have the greatest impact on improving quality outcomes for people with dementia and their carers. It is important to emphasise however that the priorities are enablers for local delivery of the Strategy in full, across all 17 objectives, as well as the work to implement the recommendations of the report in to the over-prescribing of antipsychotic medicines to people with dementia.
The four priority areas are:
Good quality early diagnosis and intervention for all - Two thirds of people with dementianever receive a diagnosis; the UK is in the bottom third of countries in Europe for diagnosisand treatment of people with dementia; only a third of GPs feel they have adequate training indiagnosis of dementia.
Improved quality of care in general hospitals - 40% of people in hospital have dementia;the excess cost is estimated to be £6m per annum in the average General Hospital; co-morbiditywith general medical conditions is high, people with dementia stay longer in hospital.
Living well with dementia in care homes - Two thirds of people in care homes havedementia; dependency is increasing; over half are poorly occupied; behavioural disturbancesare highly prevalent and are often treated with antipsychotic drugs.
Reduced use of antipsychotic medication - There are an estimated 180,000 people withdementia on antipsychotic drugs. In only about one third of these cases are the drugs having abeneficial effect and there are 1800 excess deaths per year as a result of their prescription.’
DH commissioning packs (Landsley 2010)
Commissioning packs are tools to help commissioners improve the quality of services for patients, through clearly defined outcomes that help drive efficiency by reducing unwarranted variation in services.
Each pack contains a set of tailored guidance, templates, tools and information to assist commissioners in commissioning healthcare services from existing providers, or for use in new procurements.
Integral to each pack is an evidence-based service specification which ensures that patients are placed at the forefront of the service and are central to decisions about their care.
The specification is non-mandatory and can be adapted to reflect local needs and once agreed with the provider should inform part of a renegotiated contract or form the relevant section of the NHS standard contract.
By bringing together the clinical, financial and commercial aspects of commissioning in one place, the packs simplify processes and minimise bureaucracy.
1. Cardiac rehabilitation – Oct 20102. Dementia – March 20113. Chronic obstructive pulmonary disease
Money
clinical/cost effectiveness
Early intervention for dementia is clinically and cost effective – “spend to save”
215,000 people with dementia in care homes -- £400 per week
Spend on dementia in care homes pa
£7 billion pa
22% decrease in care home use with early community based care
28% decrease in care home use with carer support (median 558 days less)
Quality – older people want to stay at home, higher qol at home
Take an additional 220 million pa
Delayed benefit by 5-10 years
Strategic head needed
Model published by DH
20% releases £250 million pa y6
ESTIMATED COSTS AND SAVINGS: 10% VARIANT
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200
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1 2 3 4 5 6 7 8 9 10
Years
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ts &
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s (£
m)
Costs to health & social care Public sector savings Societal savings
ESTIMATED COSTS AND SAVINGS: 20% VARIANT
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1 2 3 4 5 6 7 8 9 10
Years
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(£m
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Costs to health & social care Public sector savings Societal savings
Cost effectiveness
The Net Present Value would be positive if benefits (improved quality of life), rose linearly from nil in the first year to £250 million in the tenth year. This would be a gain of around 6,250 QALYs in the tenth year, where a QALY is valued at £40,000, or 12,500 QALYS if a QALY is valued at only £20,000.
By the tenth year of the service all 600,000 people in England then alive with dementia will have had the chance to be seen by the new services
A gain of 6,250 QALYS per year around 0.01 QALYs per person year. A gain of 12,500 QALYS around 0.02 QALYs per person year.
Likely to be achievable in view of the rise of 4% reported from CMS.
Needs only:-
a modest increase in average quality of life of people with dementia,plus a 10% diversion of people with dementia from residential care, to be cost-
effective.
The net increase in public expenditure would then, be justified by the expected benefits.
Please ignore – not English - economics
Banerjee and Wittenberg (2009) IJGP
Dementia care pathway – simple, navigable and commissionable
Helpseeking
primarycare
DIAGNOSISspecialist care
social care
1. Encourage help seeking and referral
2. Locate responsibility for early diagnosis and
care
3. Enable good quality care tailored to
dementia
Thank you!