Dementia v01

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					Lewisham JSNA:

              Dementia Strategy - Single Care Pathway
                                                              Supporting info
                                                               Topic Summary
                                                               Data & Trends
                                                               Supporting

   Dementia is a syndrome that can be caused by a number of progressive
   disorders that affect memory, thinking, behaviour and the ability to perform
   everyday activities. Alzheimer’s disease is the most common type of dementia.
   People with dementia, their families and friends are affected on personal,
   emotional, financial and social levels. Lack of awareness is a global problem.
   Commissioners have listened and will continue to listen to our stakeholders in the
   design and delivery of a dementia care pathway. The redesign of the care
   pathway will improve access to services and improve outcomes for patients and
   carers. This work is in line with the National Dementia Strategy 2009 ‘Living Well
   with Dementia’

What do we know?
What is this telling us?

What do we know?

                                Supporting info
                                Topic Summary
                                Data & Trends

Facts and figures




Local Views

National and Local Strategies

Current Activity and Services

Facts and Figures

Dementia is a progressive and largely irreversible clinical syndrome that is
characterised by a widespread impairment of mental function. Dementia mainly
affects older people, although there is a growing awareness of cases that start before
the age of 65. After age 65, the likelihood of developing dementia roughly doubles
every five years.

Although many people with dementia retain positive personality traits and personal
attributes, as their condition progresses they can experience some or all of the
following: memory loss, language impairment, disorientation, changes in personality,
difficulties with activities of daily living, self-neglect, psychiatric symptoms (for
example, apathy, depression or psychosis) and out-of-character behaviour (for
example, aggression, sleep disturbance or disinhibited sexual behaviour, although
the latter is not typically the presenting feature of dementia).

Dementia is associated with complex needs and, especially in the later stages, high
levels of dependency and morbidity. These care needs often challenge the skills and
capacity of carers and services. As the condition progresses, people with dementia
can present carers and social care staff with complex problems including aggressive
behaviour, restlessness and wandering, eating problems, incontinence, delusions
and hallucinations, and mobility difficulties that can lead to falls and fractures. The
impact of dementia on an individual may be compounded by personal circumstances
such as changes in financial status and accommodation, or bereavement (NICE,

“The societal cost of dementia is already enormous. Dementia is already significantly
affecting localised health and social care systems. People with dementia, their
families and friends are affected on a personal, emotional, financial and social level
and lack of awareness is a problem. A proper understanding of the societal costs of
dementia and how these impact upon families, health and social care services and
local governments may help address this problem”. (World Alzheimer’s report, 2010)

London currently has a relatively young population compared to the country as a
whole, with only 11.5% in the 65 and over age group. Lewisham has an even smaller
proportion of over 65s, at 9.5% of the total population. Population structures vary
substantially across London which explains some of the variation in the number of
people with dementia across London. Table 1 highlights the PCTs with the highest
and lowest proportions of the 65 and over age group and shows the distinction
between inner London and outer London boroughs.

Table 1 Proportion of the population aged 65+ by PCT, 2007
                                                       Proportion of the total
Relative position                  PCT                 population aged 65+,
Highest                Havering                      16.4%
                       Bromley                       15.9%
                       Bexley                        15.4%

Average                 London                             11.5%

                        Lewisham                           9.5%
Lowest                  Lambeth                            8.4%

                        Newham                             8.0%
                        Tower Hamlets                      8.0%

The breakdown of the Lewisham older adult population is listed below in Table 2. The
current numbers for older adults are similar to neighbouring PCT areas such as
Southwark and Greenwich but are substantially lower than Bromley and Croydon’s
older adult population.

Table 2 Populations in the older age groups by PCT, 2007

 PCT                           population      65-74        75-84        85+       % 65+
 Lewisham                       260,846        13,139        8,388      3,129       9.5%

According to the Healthcare for London (HLF) Dementia Services Guide Lewisham
was estimated to have a total of 1,781 people with Dementia in 2007. Lewisham has
lower levels of dementia (1.2% of the population over 30 years old) than the London
average, with very small numbers of early on-set dementia (48) for over 30’s.

Estimates for the expected number of patients in primary care on GP registers with
dementia are slightly higher and were 1,956 in 2008/09. This is likely to be because
the GP estimates use the actual number of patients registered with GPs in Lewisham
rather than population estimates. Numbers of patients registered with GPs tends to
be higher than population figures due to patients not being removed from GP’s lists
when they die or move out of the area.

Of the 1,781 estimated to have dementia by HFL the breakdown below shows the

       55% (952) estimated to have mild dementia.
       32% (559) estimated to have moderate dementia.
       13% (222) estimated to have severe dementia.
       1.2% (48) estimated to have ‘early onset’* dementia
       (‘Early onset’ are those aged 30+ to 64)

It is forecasted that the number of those that have Dementia in Lewisham by 2021
will be 1,657. This represents a reduction of 124 people from 2007 figures. This is
due to forecasted growth of the younger age groups and decrease in the older adult

In 2005/06 Lewisham had 1.7 places per 100 over 65s registered to take people with
dementia compared to a London average of 1.34.

Lewisham has a slightly higher proportion of older adults that live alone (45%)
compared to the London average. There are more care homes with nursing provision
for dementia in the borough than expected, although many boroughs outside of
central London ‘import’ older people into residential care homes. The future
estimates of provision for care homes with nursing appear to be relatively stable, with
an average of 582 nursing places required between 2008 and 2025.


Hospital admission data shows that there is no real trend in the small number of
patients admitted with a primary diagnosis of dementia. However, when patients with
an underlying or primary diagnosis of dementia are included there has been a small
year on year increase in the number of admissions for patients with dementia over
the 4 years up to 2008/09 when the number dropped slightly in 2009/10. This may be
a reflection of the overall increase in admissions over the same time period. Most of
these patients will be admitted for other reasons such as falls, fractures or other
medical conditions. These figures are likely to underestimate the number of patients
with dementia admitted to hospital as the diagnosis may not be appropriately
recorded and coded where it is not the main reason for the admission.

Figure 1 Number of patients admitted with primary or underlying diagnosis of
dementia 2005/06- 2009/10

            Number of patients admitted with a primary or underlying diagnosis of dementia


            160                                      152
                                       143                                       145
            140         132
                                                                                       Number of patients admitted with a
            120                                                                        primary diagnosis of dementia

                                                                                       Number of patients admitted with primary
            100                                                                        or underlying diagnosis of dementia



            40     28             29
                                                21                          22

                  2005/2006     2006/2007     2007/2008     2008/2009     2009/2010

Lewisham has a stable older adult population with dementia up until 2021. This
consists of an estimated 1,781 people with dementia in 2007 and 1,657 people in

In Lewisham there will be an increase of BME elders requiring dementia services.
The general rise of 33.3% in the Lewisham BME population over 20 years implies an
additional 350 additional BME clients will require dementia services. Estimates
suggest that approximately 580 BME clients will require dementia services by 2021


Diagnosis of dementia, and review of diagnosed cases, are a Quality and Outcomes
Framework (QOF) indicators for General Practices.

Across London a total of 83% of people with dementia on GP registers, who were
eligible to be reviewed by the primary care practice, were reviewed over 15 months
to 2007/08. In Lewisham 80% of eligible patients were reviewed when exceptions are
excluded. Recent analysis has shown that the Lewisham figure has risen slightly and
more clients are being reviewed. For 2011/12 key performance indicators (KPIs)
have been agreed for Lewisham GP practices in relation to the dementia. Along with
improving the recording of dementia in primary care there are 2 other indicators
linked to the prevalence of dementia in the practice. These are the; the number of
patients with dementia whose care has been reviewed in the previous 15 months and
the number of patients with dementia who have a care plan in place. These KPIs will
be benchmarked against other Lewisham practices and where they fall short
remedial action plans will need to be implemented.


In 2009/10 the GP chronic disease registers for dementia recorded that there are 868
people registered in Lewisham. This is a gap of 913 people compared to the
estimated total number of people with dementia (1,781). This is an increase on
previous years, partly as a result of better recording in primary care, but is still an
underestimate of the actual number of people in Lewisham with dementia.

Local views

A number of stakeholder engagement activities have taken place across the borough
on behalf of the PCT and Local Authority, speaking to service providers and service
users alike.

Following the Dementia stakeholder event in September 2009 chaired by NHS
Lewisham the issues raised in relation to the current provision were identified as:

      Assessment delays
      Communication with carers and preparing them for the future.
      Coordination of services
      End of life services inconsistency
      GP involvement/engagement
      Inflexible unresponsive services
      Information for carers/service users following diagnosis
      Insufficient numbers of day centre places
      Incompatible IT systems
      Multiple assessment and access points/Duplication of systems
      People accessing services too late
      Professional disciplines working in silos.
      Personalisation varies across services
      Systems complicated for service users/cares to navigate.
      Training – carers skills for coping
      Training – whole system for staff on working with people with Dementia

      Accessing community services (housing, leisure, libraries, etc)

On 9th July 2010 South London and Maudsley NHS Foundation Trust (SLaM) held a
Dementia event where 120 people including 50 service users and carers attended.

The top themes were identified as:
    Crystal clear communication
    Joined up and connected services
    Comprehensive services, community activities and peer-led resources
    Trusting relationships with people who listen, understand and respond;
       continuity of compassionate, creative and flexible care
    True partnership of staff, service users and carers - experts by experience
       and by training - in care planning, service development and service delivery
    Choice enabled and supported at every stage
    Responding to diversity everyday
    Rich lives: opportunities for activity, fun, company, spirituality and hope for
       both service users and carers
    Independence at home, enabled and supported
    Respect and safety in the community

Stakeholders identified common success factors and other shared themes, which
overlapped and cut across different situations from early diagnosis to hospital care.

These themes feature in the vision of the best possible journey for older people and
their carers, from the time a problem with memory or distress is identified until the
end of life and have been captured in figure 2.

Figure 2 Aspirational journey through a care pathway for patients and carers

Source: “I have my say and I get heard” - Report of the Appreciative Inquiry Initiative
in Lewisham, May – July 2010 – SLaM Older Adults Directorate

A third stakeholder event held in November 2010 developed the themes of the
National Dementia Strategy and has informed the development of local
commissioning plans for implementation of the strategy.

National and Local Strategies

In August 2007, the previous Government announced a programme to develop the
first National Dementia Strategy and implementation plan for England. Following
public consultation publication of the National Dementia Strategy 2009 ‘Living Well
with Dementia’ was released. The Strategy outlines three key steps to improve the
quality of life for people with dementia and their carers:

       1. Improved awareness
       2. Earlier diagnosis and intervention
       3. A higher quality of care

The Strategy also identifies 17 key objectives (see figure 3) which , when
implemented at a local level, should result in significant improvements in the quality
of services provided to people with dementia and should promote a greater
understanding of the causes and consequences of dementia.

Figure 3 Dementia Strategy 17 National objectives, 2009

In order to meet the 17 key objectives the Lewisham dementia services are being
redesigned and new services commissioned to meet gaps in current provision.

Current Activity and Services

Patients with dementia are currently supported by primary care, specialist mental
health services, acute health services and social care services. In January 2011
there were 220 patients with a diagnosis of dementia under the care of mental health
services. These are likely to be patients with severe dementia and reflect the HFL
expected prevalence estimate of 222 people with severe dementia demonstrating
accurate correlation with predicted prevalence .

In the year 2009/10 there were 145 admissions with a primary or underlying
diagnosis of dementia. This was a decrease on the previous 4 year trend.

Patients with dementia who are no longer able manage in their own homes are
placed in designated ‘elderly mentally infirm’ placements. These may be nursing or
residential care placements depending on the needs of the individual. There has
been a fluctuation in the number of patients being placed over the last three years
(see figure 4 ).

Figure 4 Elderly Mentally Infirm residential and nursing care placements 2008-



                                                                             EMI residential care
  60           62                                                            EMI nursing care



              2008                    2009                   2010


Lewisham has similar prescribing for anti-dementia drugs to the national average and
is slightly lower than the London average.

Figure 5 Dementia Prescribing in London and PCT Cluster by average daily
quantity per patient.

In the year November 2008 to December 2009 Lewisham spent £214,075 on
dementia drugs (memantine, donepezil, rivastigmine and galatamine) and dispensed
a total of 5,043 items. The expenditure from December 2009 to November 2010 was
£245,075 and a total of 6,180 items dispensed. In October 2010, NICE reversed a
previous ruling and issued new draft guidelines that said three drugs Aricept, Exelon
and Reminyl, should be available on the NHS for people in the early and moderate
stages of Alzheimer’s disease and another drug, Ebixa, should be made available to
people in the moderate to late stages. These drugs will extend the period of time
some patients are able to remain independent in their own homes. As well as
increasing prescribing volumes and costs the NICE ruling may increase demand for
specialist services who assess and initiate prescribing for dementia drugs.

The use of antipsychotic drugs in dementia (used to manage difficult behavioural
symptoms), has been under scrutiny due to evidence that the use of antipsychotic
drugs can increase the risk of adverse cerebro-vascular events including stroke. The
Department of Health committed to reducing the prescribing of antipsychotics in
Dementia by two thirds by November 2011.

In 2010 NHS Lewisham commissioned SLAM to conduct a baseline audit of
antipsychotic prescribing in dementia. Of 60 inpatients, 30% had been prescribed an
antipsychotic. Amongst community patients, of patients diagnosed with dementia was
352 of which 24 (7%) patients were prescribed an antipsychotic. Prior to prescribing
an antipsychotic drug a number of conditions should be met including:

      Exclude physical illness potentially precipitating behaviour and psychological
       symptoms in dementia e.g. constipation, infection, pain
      Target the symptoms requiring treatment
      Consider non-pharmacological methods first
      Carry out a risk/benefit analysis tailored to individual patient needs when
       selecting a drug. Document this in the medical notes

      Discuss treatment options and explain the risks to patient (if they have
       capacity) and family/carers
      Titrate drug from a low starting dose and maintain the lowest dose possible
       for the shortest period necessary
      Review appropriateness of treatment regularly (every 3 months) so that
       ineffective drug is not continued unnecessarily- (consider whether
       antipsychotic can be stopped or dose can be reduced at every review)
      Monitor for adverse effects
      Document clearly all treatment choices, reviews and discussions with patient,
       family or carers

This initial audit showed that all standards are rarely met. Those most commonly met
include the elimination of a physical cause and a perceived benefit of the

What is this telling us?

                                                          Supporting info
                                                          Topic Summary
                                                          Data & Trends
                                                          Supporting Documents

What are the key inequalities?

What are the key gaps in knowledge/services?

What is coming on the horizon?

What should we be doing next?

What are the key inequalities?

Lewisham is the 39th most deprived borough in England (out of 354 local authorities)
and in the bottom third of most deprived London boroughs. The socio-economic
inequalities affect all aspects of health, ranging from risk factors to health outcomes
and access to services. Much of the health inequalities agenda focuses on mortality
rates and life expectancy but quality of life is also crucial. People with long-term and
progressive illnesses, such as dementia, are affected by their socio-economic
position but there is relatively little coverage of this in key national documents. Many
older people living on low incomes may be at significant socio-economic
disadvantage, which is known to have adverse effects on physical and mental

There is some evidence that people from BME groups are more likely to suffer from
dementia at a younger age. While 2.2% of the general population with dementia are
of early onset, the proportion is 6.1% in BME groups (Alzheimer’s Society, 2011).

There is currently insufficient information on the uptake of services and barriers to
service to ascertain the impact of inequalities. It is important that this information is
captured as part of the development of new services and improves in existing
services. Of the dementia patients admitted to hospital between 2004/5 – 2010/11,
overall 30% came from BME groups and 12.8% came from Black British, Caribbean,
African or other groups. This compares to 22.7% BME groups in the over 65
population and 14.4% in the Black British, Caribbean, African or Black Other groups.

The projected increase in the proportion of older people from BME groups will require
services for people to cater for the changing BME elderly population. This will include
ensuring that services are culturally appropriate (including social care services),
translation services are available and information is available in a range of languages
and that co-morbidities which are more common in certain ethnic groups are
managed appropriately.

What are the key gaps in knowledge/services?

It is likely that the number of people with dementia known to services is an
underestimate of the total need in Lewisham. In particular, those with mild or
moderate dementia are less likely to be known to services yet as they may not meet
thresholds for services. Improving the GP dementia registers will help identify more
people with dementia which will enable them to access services earlier. In addition to
this public information campaigns in relation to dementia are being run locally and
nationally to encourage people to come forward for help if they or someone they care
for has symptoms of dementia.

Several service gaps have been highlighted through stakeholder consultation and
through the Dementia strategy. These are summarised in Table 3 with the relevant
Dementia Strategy Objective and the local commissioning response.

Table 3 Identified gaps in dementia care services, links to meet all the National Dementia Strategy objectives and the local
commissioning response

Stakeholder feedback/Gap identified             Links to Dementia Strategy Objective                Commissioning response

   GP involvement/engagement                   Improving public and professional awareness         New Lewisham Dementia services guide for
                                                and understanding of dementia.                      the public

                                         Good-quality information for those with
                                         diagnosed dementia and their carers.
   Training – carers skills for coping  Improved quality of care for people with dementia          Increase training for staff within hospitals and
   Training – whole system for staff on in general hospitals.                                      care homes
    working with people with Dementia
   Professional disciplines working in Living well with dementia in care homes.
                                         An informed and effective workforce for people
                                         with dementia.

   Systems complicated for service             Good-quality early diagnosis and intervention for   New Dementia Assessment, Diagnosis and
    users/cares to navigate                     all.                                                Treatment service
   Assessment delays
   Information for carers/service users
    following diagnosis
   Multiple assessment and access
    points/Duplication of systems
   People accessing services too late
   Inflexible unresponsive services
   Incompatible IT systems
   Accessing       community        services   Enabling easy access to care, support and           New Voluntary sector service to provide
    (housing, leisure, libraries, etc)          advice following diagnosis.                         information on Dementia
   Communication with carers and
    preparing them for the future               Development of structured peer support and
   Coordination of services                    learning networks.

                                             Improved community personal support services.

   Accessing      community         services Implementing the Carers’ Strategy.                 New Carer Support Worker specifically for
    (housing, leisure, libraries, etc)                                                           Dementia
   Communication with carers and
    preparing them for the future
   Coordination of services
   Personalisation varies across services Improved intermediate care for people with            Extend support within day care services
   Insufficient numbers of day centre dementia.
   Accessing      community         services Considering the potential for housing support,     Extend provision of Assistive Technology
    (housing, leisure, libraries, etc)        housing-related services and telecare to support
                                              people with dementia and their carers.
   Inconsistent end of life services        Improved end of life care for people with           End of life care will be in line with Lewisham
                                             dementia.                                           End of Life Care Strategy.
                                                                                                 Support will be available for carers,
                                                                                                 both during a person’s illness and
                                                                                                 after their death
                                                                                                 All dementia patients known to services have
                                                                                                 a care plan which includes opportunity to
                                                                                                 discuss advance directives.
                                                                                                 Ensure that the newly commissioned service
                                                                                                 has good links to end of life care services.
                                                                                                 All voluntary sector support staff receive
                                                                                                 dementia end of life training

What is coming on the horizon?

With an ageing population and dementia gaining increasing media, public and
political momentum there will be an increasing pressure to deliver an effective and
quality care pathway representative of local need.

Population projections suggest that Lewisham will not have a rise in its over 65’s
population. Lewisham will therefore not be commissioning to accommodate an
increase in dementia prevalence but instead working with stakeholders to improve
health and well-being outcomes. This includes work to meet all 17 objectives of the
National Dementia Strategy.

As new assisted technologies become available to support patients with dementia
these will be used to enable people to retain as much independence as possible with
support from services.

What should we be doing next?

The priority for Lewisham is to implement the 17 objectives outlined in the National
Dementia Strategy and develop a new dementia service to meet the needs of all
dementia patients in the borough. While it is not anticipated that there will be an
increase in the number of patients with dementia in the borough, it is expected that
there will be an increase in the number of patients with dementia accessing health
and social care services as awareness of the condition increases and early diagnosis
is more widespread. A multi-agency steering group will oversee the implementation
of the dementia project plan to ensure that the service changes necessary are
implemented and monitored to manage the increased patient throughput and
improve the services patients with dementia currently receive.


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